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Is Chemobrain Real? Coping With Cancer-Related Cognitive Changes

A familiar name on the tip of your tongue, keys misplaced, a train of thought derailed in the middle of a sentence. If what I’ve just described sounds familiar, you may be experiencing symptoms of “chemobrain” – a name for the cognitive (how you process and recall information) difficulties associated with cancer treatment.

Although one of the most frustrating side effects of chemotherapy, not long ago, the medical profession was skeptical when patients who had completed treatment complained of a kind of mental haze or fog. Today, despite some lingering skepticism, research studies confirm what patients have long reported – that chemobrain is a real issue for people living with and beyond cancer.

The first of these studies [1] which was published in 2011 was conducted at Stanford University and used functional MRI imaging (fMRI) to compare the brain images of healthy women and women with breast cancer. The study found that not only did brain activity differ, but that those patients who had undergone chemotherapy had additional specific differences and decreases in executive function – the mental processes that enable us to plan, focus attention, remember instructions, and juggle multiple tasks successfully.

Signs and Symptoms of Chemobrain

A more formal term – post-cancer cognitive impairment (PCCI) – is used by researchers to describe a group of symptoms, which include slow mental processing, difficulty concentrating, organizing, and multitasking. Things you could do easily before cancer are now more difficult.

Symptoms can also include:

  • memory loss – forgetting things that you normally remember
  • tiredness and mental fogginess
  • struggling to think of the right word for a familiar object
  • difficulty following the flow of a conversation
  • confusing dates and appointments
  • misplacing everyday objects like keys and glasses

These symptoms can be especially frustrating when you are at work or in social situations. “It can be difficult to explain to others what we are going through,” explains therapist Karin Sieger [2]. “I like to use the example of a computer. If our brain was a computer used to running 6 apps and multi-tasking for example on Facebook, Twitter, watching TV and doing WhatsApp at any given time, with chemo brain our brain may be able to use one app only, and even then only for a short period of time. It will also take a lot longer to re-charge.”

What Causes Chemobrain?

It’s still not clear how many people with cancer get chemobrain or which drugs cause it. People who had high doses of chemotherapy may report memory problems, but even those who had standard doses have also reported memory changes.

Cyclophosphamide, Adriamycin, 5-FU, and Taxol seem to be particular culprits, but there are others that can cause the condition.  Tamoxifen, and to a lesser degree, aromatase inhibitors may also have a negative effect on cognition.

Research also suggests that a combination of factors, including the stress and anxiety of a cancer diagnosis and side effects of treatment such as fatigue, anaemia, sleep disturbances or hormonal changes can also play a part.

Who Gets Chemobrain?

When it comes to answering the question of which patients get chemobrain, studies have reported a wide range of different figures, ranging from 17% to 60%. The condition can affect people with different types of cancer and at different times. It affects men and women of all ages, although people might be more likely to have the condition if they are older or already have problems with memory or anxiety and depression.

Can I Reduce The Symptoms Of Chemobrain?

There are several things that you can do to help you cope better with chemobrain.

Make sleep a priority

Research has found that not sleep deprivation can affect our ability to commit new things to memory and consolidate any new memories we create. Getting enough sleep is a state that optimizes the consolidation of newly acquired information in memory. [3]    Even a short nap can improve your memory recall.

Take regular exercise

Studies have shown that regular exercise can improve memory as physical activity will increase blood flow to your whole body, including your brain. [4]    There are many benefits to exercise. Not only does it help reduce the symptoms of fatigue (which exacerbates cognitive processing) exercise encourages your body to release endorphins – often called ‘feel good hormones’. When released, endorphins can lift your mood and sense of well-being.  Easing stress and elevating mood may also ease chemobrain symptoms.

Keep your mind active

Just as physical activity helps keep your body in shape, mentally stimulating activities help keep your brain in shape too. Doing crosswords, sudoku and puzzles will help to keep your mind exercised. You may also like to try computer pro­grams that are designed to improve memory and attention span.

Practice mindfulness meditation

Research has shown that practicing mindfulness can improve memory recall in just eight weeks. Meditation has also been shown to improve standardized test scores and working memory abilities after just two weeks. [5]

Eat more berries

More research is needed in this area, but some studies show that phytochemical-rich foods, such as blueberries, are effective at reversing age-related deficits in memory. [6] Blueberries are a major source of flavonoids, in particular anthocyanins and flavanols. Although the precise mechanisms by which these plant-derived molecules affect the brain are unknown, they have been shown to cross the blood brain barrier after dietary intake. It’s believed that they exert their effects on learning and memory by enhancing existing neuronal (brain cell) connections, improving cellular communications and stimulating neuronal regeneration.

Ten Tips to Help You Cope With Chemobrain

Below you’ll find a list of everyday self-help tips which will help restore your confidence at work and in social situations when you feel brain fog descend.

  1. Lists are your friend. Write daily lists about the errands you need to run, things you need to buy and where you have left important things.
  2. Carry a notebook with you to keep track of daily activities and things you want to remember. Make use of daily planners, wall planners, smart phones, and other organizers.
  3. Put sticky notes as reminders in places where you will easily see them.
  4. Say information you want to remember out loud five or six times to help fix it in your memory.
  5. Try linking a visual image with the information you want to remember.
  6. Leave a message on your answering machine or set an alert on your phone to remind yourself of something important.
  7. Get in the habit of keeping everyday items like your keys and cell phone in a regular place for easy retrieval, for example a basket or table by your front door.
  8. Avoid trying to do too many things at the same time. Concentrate on one task at a time and don’t multitask. Put your phone away, close your email applications and any unnecessary browser windows on your computer. Concentrate fully on the one task you need to complete.
  9. Plan ahead. List your 3 most important tasks to deal with the night before, so you can hit the ground running the next day.
  10. Do the most difficult tasks of the day first thing when you are most alert.  If a task is too big to complete in one day, divide it into smaller tasks to be spread out over several days.

When To Seek Further Support

For most patients, chemobrain improves within a year after completing chemotherapy, although around 10-20% of people may have long-term effects even ten years after treatment. However, these side effects should be stable. If you have tried self-help techniques but the symptoms are not improving, you should speak with your doctor who may refer you to a neuropsychologist.

Neuropsychologists are psychologists with special training that prepares them to help people experiencing trouble in areas such as attention, new learning, organization and memory. A neuropsychologist will do a complete evaluation and determine if there are any treatable problems such as depression, anxiety, and fatigue.  It’s important to make sure you’re receiving treatment for any depression, anxiety, or sleep problems. Make sure you also have had your thyroid, vitamin D and B12 levels checked.

Chemobrain is a frustrating side-effect of treatment and a reminder that cancer isn’t done with us when treatment ends. It’s important to know that there is help available. Don’t ever feel you are alone when it comes to dealing with the ongoing effects of cancer. Talk to your doctor and reach out to your online patient community for support and practical tips on coping with chemobrain.


References

[1] Kesler, S.R. et al. Prefrontal Cortex and Executive Function Impairments in Primary Breast Cancer, Arch Neurol. 2011;68(11):1447-1453

[2] Karin Sieger

[3] Born, J., Rasch, B., & Gais, S. (2006). Sleep to Remember. The Neuroscientist, 12(5), 410–424. 

[4] Erickson, K.I, et al. Exercise training increases size of hippocampus and improves memory Proceedings of the National Academy of Sciences Feb 2011, 108 (7) 3017-3022.

[5] Mrazek, M. D., Franklin, M. S., Phillips, D. T., Baird, B., & Schooler, J. W. (2013). Mindfulness Training Improves Working Memory Capacity and GRE Performance While Reducing Mind Wandering. Psychological Science, 24(5), 776–781.

[6] The Peninsula College of Medicine and Dentistry. “Getting Forgetful? Then Blueberries May Hold The Key.” ScienceDaily. 12 April 2008.

 

 

Beating Burnout: Self-Care Strategies for Patient Advocates

As patient advocates we are highly motivated to make things better for others. Our commitment and passion for the work we do can lead us to take on more activities with ever-increasing demands on our time and energy. All of this we do willingly, but this work doesn’t happen without a degree of personal cost. “If we are living with the condition, it is personal beyond measure,” writes diabetes advocate Renza Scibilia. “If we are caring for someone and advocating for them, there is a different sense of pressure and investment. And if we decide that this is ‘a calling’ and do it professionally, there is a difference again as we try to work within different parameters – the need to keep within the realms of what our work allows, and the less structured realities of actually living with a health condition.”

Commenting on the nature of patient advocacy, therapist Karin Sieger [1] points out, “this area can be heightened with emotions because lives can depend on it and often advocates themselves are directly or indirectly affected by patient care aspects or illness they are advocating for. It stands to reason that those involved in advocacy will be at the receiving end of emotional, mental and physically draining activities.”   Given this fact, it’s not uncommon to experience symptoms of burnout the longer we work in the field of advocacy.

“This is a real thing,” says patient leader and two-time cancer survivor, Shari Berman [2]. “Working without pay but as a patient leader is recipe for burnout especially when you feel like the needle isn’t moving.”  As metastatic breast cancer patient and advocate, Julia Maues [3] says, “Oh the burnout is so real and so unique. For once, many of us have the same illness as the people we are advocating for. It’s like advocating for better lives for prisoners while being jail ourselves.”

What is burnout?

Burnout is a state of chronic stress which occurs when we’ve taken on too much and in the words of Sieger, “overstepped our coping threshold.”  Scibilia describes how she has “found myself at that breaking point on more than one occasion when the system is failing me, and equally, when I see it failing others and I can’t help.”

One of the lesser acknowledged contributing factors to burnout, particularly in the field of cancer advocacy, is the emotional toll of losing friends to the disease. As Susan Zager, founder of the non-profit organization, Advocates for Breast Cancer (A4BC) [4] describes, “the biggest factor that’s caused me burnout is the intense loss and grief of losing so many friends and family to this terrible disease.” Research advocate, AnneMarie Ciccarella [5] agrees.  “I had to force myself to take a step back from actively supporting individual people in favor of more research advocacy because the losses became unbearable,” she explains. “There are times I’ll look at a particular blog post and start crying when I read the comments. I see comments from so many who are now gone and it’s heartbreaking.”

Pamela Katz Ressler, founder of Stress Resources [6], draws a distinction between burnout and compassion fatigue which can co-exist with burn-out.   “Compassion fatigue is generally rapid onset and often is the result of exposure to extreme suffering or witnessing traumatic events and situations,” she explains. “It can be one event or a cumulative exposure. Burnout can be described as emotional (and physical) exhaustion leading to withdrawal and disconnection from activities that once were meaningful. As advocates, we often expend energy, caring, and empathy as if it comes from a bottomless well.”

Spotting the Signs of Burnout

Burnout doesn’t happen suddenly. It creeps up on us over time, but our bodies and minds do give us warning signs. Symptoms can include physical and emotional exhaustion; impaired concentration; increased irritability or feelings of apathy, detachment or cynicism related to the work you are doing.  In the words of Scibilia, “I get tired. I get overwhelmed. I get discouraged. I get disengaged. I get disheartened.

Looking at some of the common factors related to burnout, Sieger points to:

  • An inability to say ‘no’.
  • The fear of putting our needs first and in doing so letting others down.
  • Taking on too much because we want to please, need to control, cannot delegate, want to micro-manage, cannot trust anyone else to do things for or with us, or have no-one to share responsibilities with.
  • We are not sufficiently in touch with our bodies, minds or emotions to see the tell signs.
  • We think it is a sign of strength and authority to be able to take on more and more.
  • We are afraid of becoming replaceable.
  • We find it difficult to accept, that we can no longer take on as much as before.

If you recognize your own tendency towards any of these factors, you may be at risk of burnout. Katz Ressler advises that “the first step in preventing burnout and compassion fatigue is awareness and recognition that the well of empathy, energy and caring needs to continually be refilled.”  The following self-care strategies and tips can help you, in the words of Katz Ressler, “refill the well of empathy to maintain your ability to advocate effectively.”

14 Self-Care Strategies to Address Burnout

“Different people have different ways that work well for them, says Sieger.  “Self-care, keeping health boundaries, a healthy diet, limited stress, moderate exercise, sufficient sleep and quiet down-time are the essentials.”

Let’s take a deeper dive into these essential strategies and add a few more to our self-care toolkit.

1. Set realistic expectations. Patient advocate, Liza Bernstein [7], believes a key element in managing burnout is to set realistic expectations. “One key to mitigating patient advocacy burnout is to recognize our role and agency in trying to manage it,” she says. “It is not easy, once you’re diagnosed with and treated for cancer to reconcile your new physical and emotional reality with the non-cancer person you used to be. So we have unrealistic expectations.” Bernstein describes her “burnout prevention strategy” at the 2018 San Antonio Breast Cancer Symposium. “It was a few months after a surgery and I wasn’t yet 100%,” she explains. “So I gave myself ‘The Talk’ and granted myself permission to do ‘as little as possible’ there; e., I paced myself, took breaks, and didn’t burden myself with ableist expectations. I did more tangible things tuning out the presentation & DM’ing people in my network to connect a distressed newly diagnosed person with a second opinion appointment. Seems like small thing but had big impact!”

2. Take breaks between big projects. Try to avoid jumping from one time-consuming project to the next in order to give your mind and body a chance to recover. “When projects turn into being a tedious chore, that’s a big sign of burn out,” says patient advocate Mary Pettigrew [8], who advises, “make it a habit to purge the unfulfilling, stressful activities, keep those of value and explore new territory/opportunities.”

3. Learn to prioritize. Ovarian cancer advocate, Dee Sparacio, wrote on her blog [9] about taking a step back from her heavy work-load of advocacy activities to focus on her priorities. She outlined a list of questions to help her decide which activities to prioritize:

  • How effective am I at doing that work?
  • Am I the only one doing that work?
  • If I am the only one can another advocate/person do it?
  • How much does the work benefit other survivors/patients?
  • How many people are effected by the work I do?
  • Do I ever regret having agreed to do the work and feel that way when I am doing it?
  • Does the work ever prevent me from doing other things – like hang out with my husband, grand-kids or dog?
  • Does that work bring me joy?

Remember, to quote Stage 4 melanoma patient, Kay Curtin [10], “it’s very easy to get caught up trying to fix everyone’ else’s priorities.” These questions can act as a helpful guide when it comes to reassessing your own priorities and what matters to you.

4. Say no. Self-care may involve you saying no more often, which, if you are like me, you might find challenging. There are always new opportunities or requests for your time, but an important element of self-care is the ability to pace yourself.  Before you say yes to the next request, look at the time and energy you have in a realistic way.  Follow Sparacio’s advice “I review my advocacy work and its impact once a year. I keep what brings me joy -not necessarily that which brings me exposure. The hard thing is learning to say no. If I say no I will provide the name of a new advocate voice. We need to cultivate new voices.”

5. Schedule time for yourself each day. “Schedule time to step away from ‘doing’ and shift to ‘being’. Take five minutes to turn off your phone, notice your breath and release muscle tension in your body,” recommends Katz Ressler. “I’ll hit the beach collecting shells to clear my head, but a simple walk around the block is helpful too,” says Ciccarella, “and when I have nothing left, I give myself permission to hit the sofa and turn on mindless, silly television.”

6. Feed Your Fighting Spirit. Registered dietitian and founder of “Dam. Mad. About Breast Cancer”[11], Cathy Leman reminds us of the importance of good nutrition in maintaining a healthy balance. “Balanced blood sugar for sustained energy and optimizing your immune system so you stay well are just two benefits of nourishing your body with quality meals and snacks,” she says. “Dried, fresh and frozen fruit, nuts, pre-washed and bagged veggies, whole grains and good olive oils and flavored vinegars can help you pull meals and snacks together quickly and easily.”

7. Control your devices. iPads, computers, and smartphones are essential tools in the patient advocate’s toolkit, but they can consume large amounts of your time and energy. Get in the habit of turning them off as much as possible, particularly before you go to bed at night.

8. Slumber Your Way to Good Health. “With all you have to get done, getting adequate sleep may fall to the bottom of your list,” says Leman “But when you don’t get the sleep your body needs (and deserves!), your overall performance suffers.” A good morning, she advises always begins the night before. “Create an evening ‘sleep hygiene’ routine that signals to your brain and body you’re ready to call it a day. When you’re well rested, you’ll have more patience, clarity of thought and focus to do your important work. And as a bonus? Getting enough sleep helps you make healthier food choices, which supports good health all the way around.”

9. Exercise Your Body’s Need to Move. “You need mental clarity, focus and stamina, and regular exercise is a simple way to tap those reserves,” advises Leman. “Even a 10 minute walk can clear brain fog, deliver nutrients and oxygen to every cell in your body, and build physical endurance for the long haul. Combine strength training, cardiovascular, core, flexibility and balance exercises as often as possible for a well-rounded fitness routine that will keep you moving forward.”

10. Take time for reflection. Taking time, whether it’s sitting quietly on your own, journaling, or speaking with a friend or therapist to reflect on what’s going on for you is important. “It’s important for all of us in this space to pause, assess, and take whatever time we need to reboot,” advises Ciccarella, for whom writing is “a powerful outlet to deal with all of my feelings. Identifying my feelings and their underlying cause allows me to accept the feeling and FEEL it – whether it’s fear, anger, grief -really, any emotion that drags me down.”

11. Don’t go it alone. Whether it’s peer support, or a professional, find a group or an individual who can support you on this journey. “I would even go as far as saying that having another independent professional to support us is essential,” suggests Sieger, “like supervision for therapists and counsellors, where we can talk things over, an outlet for our pressure and feelings.”

12. Intentionally step away from your “tribe” for short periods of time to refill your reserves, advises Katz Ressler. “Detribe” is a term she coined a number of years ago that may seem counterintuitive. As she explains it: “How can we step away from our ‘tribe’ when there is so much to do? Research shows that by intentionally engaging in self-care activities (think meditation, a walk in nature, a cup of tea with a friend) burnout can be reduced or eliminated.”

13. Choose what works for you. “You have to find what works for you,” says Bernstein. “It might not be a massage/spa, it might be doing what you love, giving back, being in nature, taking a nap, patting your dog… it really means being compassionate to you, as if you were your best friend.”  Katz Ressler echoes this and advocates practising a spirit of loving-kindness. “Allow yourself to be as kind and empathic to yourself as you are to others. What ‘gift’ would you give someone else to show they are appreciated? Give the same gift to yourself,” she says.

14. Knowing when it’s time to quit. Sometimes the best self-care is to quit. Sue Robins [12]  took the decision to do just that. “I still do advocacy but on my own terms, though writing and storytelling and with individuals. I handled my burnout by quitting the ‘patient engagement’ world.”

Take-home message

“Burnout in patient advocacy is real,” says Terri Coutee, founder of  DiepCFoundation.org [13] .  “It takes a tremendous amount of dedication and discipline with the potential of draining your personal emotional and physical energy.”  But the good news is that burnout is reversible. By putting the focus back on self-care, you can learn to manage your energy, time, and personal resources better.   Although, this too takes self- discipline. “I think it takes discipline (ie, effort) for many of us to remind ourselves we need to practice self-care regularly,” notes Bernstein.  As Coutee explains, “choosing the gym, saying no, and letting others take care of themselves are among the many actions requiring discipline. Choose the one that works for you so you can continue the work of patient advocacy with passion without burning out.”

Whichever path to self-care you choose, once burnout is recognized and attended to, it can become a chance to rediscover your commitment to the important work you do as advocates for better care for yourself, your loved ones and your community. Let these tips and techniques be a reminder that YOU are most deserving of the gift of self-care.


Resource Links:

[1] Karin Sieger

[2] Shari Berman

[3] Julia Maues

[4] Advocates for Breast Cancer

[5] AnneMarie Ciccarella

[6] Stress Resources

[7] Liza Bernstein

[8] Mary Pettigrew

[9] Dee’s blog

[10] Kay Curtin

[11] Dam. Mad. About Breast Cancer

[12] Sue Robins

[13] DiepCFoundation.org

How Do You Deal With Cancer Guilt?

It may come as a surprise to those who have not experienced cancer to learn that many cancer survivors suffer a form of “survivor guilt.”  Survivor guilt is most often associated with a reaction to surviving a traumatic event that others have died in, for example, survivors of combat, terrorist attacks, natural disasters, or air crashes. Survivors feel guilty that they have survived the trauma and others – such as their family, friends, and colleagues – did not.

When the Diagnostic and Statistical Manual of Mental Disorders IV (DSM-IV) was published, survivor guilt was removed as a recognized specific diagnosis and redefined as a significant symptom of post-traumatic stress disorder (PTSD).

It seems clear to me that a diagnosis of cancer fits both the description of survivor guilt and PTSD too. Cancer is a traumatic experience and no-one who survives treatment comes out the other side unscathed.    As so many of us know, the end of treatment is not the end of dealing with cancer.  When we’re going through treatment, we are simply trying to survive and don’t really feel the full emotional impact that being diagnosed with cancer involves. It’s often only when treatment ends, that the full impact hits us.

Cancer Related Guilt is a Complex, Multi-Faceted Emotion

We may feel guilt at “surviving” when others have not.  Dee Sparacio writes of her feelings at a time when a friend’s husband died. “How could I face my friend?  How could I, NED [No Evidence of Disease] for 5 years since my recurrence face my friend. Would she look and me and think – why are you still here and my husband is gone?”

Karin Sieger also describes her experience of feeling guilty after a relative died from cancer.  “A few years after my first cancer treatment, the terminal cancer diagnosis of a relative of mine, her gradual and then very quick deterioration and death filled me with the old feeling of guilt,” she writes. “In the presence of the bereaved mother my own mother felt guilty that her child is still alive. Cancer guilt can happen to anyone affected by cancer, including relatives and friends.”

We might feel guilty that our lifestyle choices somehow contributed to a cancer diagnosis. If we have discovered we carry the BRCA1/2 gene, we may feel guilty that we could pass this gene mutation on to our children.  On her blog, Audrey Birt describes how “breast cancer guilt has stalked me. Even when I’ve thought I’d put that beast to rest, up it pops in various guises. My guilt as a parent for causing my family to suffer has been a long term one. Carrying the BRCA2 gene tipped me again into a spiral of grief and guilt but somehow staying with that and recognizing that for what it is has helped me move through it.”

Cancer Guilt May Arise During Any Stage

I have also heard from patients diagnosed with an earlier stage disease, and patients who didn’t have to go through chemotherapy that they felt less “deserving” of sympathy.  One of my blog readers wrote, “I felt like a fraud when diagnosed as in I didn’t need chemo just surgery, radiation and tamoxifen so I didn’t want to make any fuss when so many others had REAL cancer.”

Guilt may also arise from a sense that what I’m doing with my life must have greater meaning if my survival is to be justified. Another of my blog readers commented, “I feel guilty that I am not making more of my life. When I was going through treatment, I made all sorts of plans for what I would do when I finished. I was really going to make the most of my life, now that I’ve been given a second chance…but I am too tired and overwhelmed to do any of those things.”

If any of this sounds familiar to you, you are not alone.  Feeling guilty at surviving cancer is a common experience and a perfectly normal reaction to what you have gone through. When I asked the question of my breast cancer community on Twitter “how you deal with survivor guilt?” I received some great answers.   I hope you will find comfort and practical advice in the quotes below.

“Cancer guilt was related to my family. Years before my diagnosis, my dad died of cancer. So they all had to do it again with me though a different situation. I felt huge guilt about my dad for not understanding. Counseling helped a lot. I would recommend counseling for sure. Or friends who listen and allow you to air the emotion.” Julia

Survivor’s Guilt

“I do feel a certain amount of “survivor’s guilt” since my cancer was stage 0 and no chemo or radiation-just surgery. Volunteering at a cancer support center helps me and inspires me filling me with hope – witnessing patients fortitude and determination to regain their health is so inspiring.” Susan

“The survivor guilt I felt was a sense of discomfort. I was quite possibly picking up someone else’s anger, frustration and despair at their own situation. But it is their situation, not mine. And since my second diagnosis I certainly have nothing to feel guilty about or to apologize for. We have a choice not do guilt, and also do not need anyone else to do guilt for us.” Karin

“As I’ve lost friends and colleagues to breast cancer I’ve grieved for them with an added complexity. What made the difference? Why did I survive and not them? In some ways I’m embarrassed I’m still here, four diagnosis later. It’s a form of madness to feel guilty you haven’t died, to feel guilty your treatment isn’t as bad as others, to feel guilty you’ve survived more than 20 years since your first diagnosis. I know it makes no sense but it’s easy to carry guilt along with everything else. But it serves no purpose and is fueled by a media that feeds a view of the cancer experience which is unrealistic, overly simplistic and laden with judgment.” Audrey

Overcoming Cancer Guilt

In his book, Travelling Light (The Columba Press) Daniel J. O’Leary quotes Bearwatcher, an Apache medicine man. “In the Apache language there is no word for ‘guilt.’ Our lives are like diamonds. When we are born we are pure and uncut. Each thing that happens to us in our lives teaches us how to reflect the light in the world; each experience gives us a new cut, a new facet in our diamond. How brilliantly do those diamonds sparkle whose facets are many, to whom life has given many cuts.”

So when you experience those feelings of guilt, contemplate the brilliant new facet in your diamond and reflect on the way that you can reflect that light in the world. You will best honor the memory of those friends who have died, by looking to the future and pledging to make the best life you can for yourself and those you care about. Life is a precious gift and you have been given the opportunity to recommit yourself to it. Now is your time to live; so armed with the lessons you have learned from your cancer experience, look to the future and shine with the brilliance of your diamond light.

Did you find this blog post useful? If so, please consider donating so that we can continue to provide valuable content.

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Resource Links:

 Dee Sparacio

Audrey Birt

Karin Sieger

Is there a hierarchy among cancer survivors?

Twitter Comments:

Julia

Susan

After Cancer, Ambushed By Depression

At some stage in all our lives there comes a time when feelings of sadness, grief or loneliness gets us down. It is part of being human. And after all, what’s more human than feeling down after such a life-changing and stressful event like cancer? Most of the time, we bounce back; but what happens when the blues stick around and start to interfere with our work, our relationships and our enjoyment of life?

Dana Jennings, whose writings in the New York Times about his treatment for prostate cancer, so eloquently captured the mix of feelings which cancer survivors face after treatment ends, wrote that while he was “buoyed by a kind of illness-induced adrenaline” during treatment, once treatment ended, he found himself “ambushed by depression.”

Jennings’ words will have a familiar ring to many of us who have struggled with that unexpected feeling of depression and loneliness that creeps up on us after treatment is finished. For some survivors, depression kicks in shortly after diagnosis or at some stage during treatment; for others it may ambush them weeks, months or even years after treatment ends.

What Causes Depression?

Depression is a word that means different things to each of us; people use it to describe anything from a low mood to a feeling of hopelessness.  However, there is a vast difference between clinical depression and sadness. Sadness is a part of being human; it comes and goes as a natural reaction to painful circumstances, but it passes with time. Depression goes beyond sadness about a cancer diagnosis or concern about the future.

In its mildest form, depression doesn’t stop you leading your normal life, but it does make things harder to do and seem less worthwhile. At its most severe, the symptoms of clinical depression are serious enough to interfere with work, social life, family life, or physical health.

Incidence of Depression in Cancer Survivors

Research shows that cancer survivors are more likely than their healthy peers to suffer psychological distress, such as anxiety and depression, even a decade after treatment ends. Although estimates of the frequency of depression in cancer patients vary, there is broad agreement that patients who face a disruptive life   event like cancer have an increased risk of depression that can persist for many years.  While most people will understand that dealing with a chronic illness like cancer causes depression, not everyone understands that depression can go on for many months (and even years) after cancer treatment has ended.

The Challenge of Identifying Depression in Cancer Patients

Some research has indicated that depression has been underdiagnosed and undertreated in cancer patients.  This may result from several factors, including patients’ reluctance to report depression, physician uncertainty about how best to manage it, and the belief that depression is a normal part of having cancer.

Several of the characteristics of major depression listed below– like fatigue, cognitive impairment, poor sleep, and change of appetite or weight loss—are hard to distinguish from the common side effects of cancer treatment. This makes it harder to tease apart the psychological burden of cancer, the effects of treatment, and the biochemical effects of the disease.

Are You At Risk of Depression?

Depression can occur through a combination of factors, with some of us being more prone to depression than others.  Factors such as a history of depression, a history of alcohol or substance abuse, and a lack of social support can increase the risk of depression in both the general population and among cancer patients.

Even if a person is not in a high-risk category, a diagnosis of cancer is associated with a higher rate of depression, no matter the stage or outcome of the disease.

Distress over a cancer diagnosis is not the same thing as clinical depression – it is important to recognize the signs and get treatment. The first step is to identify if you are experiencing symptoms of depression.

Try answering the following two questions.

Have you, for more than two weeks (1) felt sad, down or miserable most of the time? (2) Lost interest or pleasure in most of your usual activities?

If you answered ‘YES’ to either of these questions, you may have depression (see the symptom checklist below). If you did not answer ‘YES’ to either of these questions, it is unlikely that you have a depressive illness.

Depression Checklist*

(Tick each of the symptoms that apply to you)

  • Trouble sleeping with early waking, sleeping too much, or not being able to sleep
  • On-going sad or “empty” mood for most of the day
  • Finding it hard to concentrate or make decisions
  • Feeling restless and agitated, irritable or impatient
  • Extreme tiredness and lethargy
  • Feeling emotionally empty or numb
  • Not eating properly; losing or putting on weight
  • Loss of interest or pleasure in almost all activities most of the time
  • Crying a lot
  • Losing interest in your sex life
  • Preoccupied with negative thoughts
  • Distancing yourself from others
  • Feeling pessimistic about the future
  • Anger, irritability, and impatience

Add up the number of ticks for your total score: _______

What does your score mean?

  • 4 or less: You are unlikely to be experiencing a depressive illness
  • 5 or more: It is likely that you may be experiencing a depressive illness.

NB This list is not a replacement for medical advice. If you’re concerned that you or someone you know may have symptoms of depression, it’s best to speak to your doctor.

Depression – The Way Forward

It’s common to experience a range of emotions and symptoms after a cancer diagnosis, including feelings of stress, sadness and anger. However, some people experience intense feelings of hopelessness for weeks, months, or even years after diagnosis. If you continue to experience emotional distress from your cancer, it’s very important to know that help is available, and to get the help you need.

The first step on the path to recovery is to accept your depression as a normal reaction to what you have been through –don’t try to fight it, bury it or feel ashamed that it is there.  Think of your depression as just another symptom of cancer. If you were in physical pain, you would seek help, and it’s the same for depression.  There are many people willing to help you but the first step is to let someone know how you are feeling. Finding the courage to talk to just one person, whether that’s a loved one, primary care physician, or specialist nurse will often be the first step towards healing.

The psychological effects of cancer are only beginning to be studied and understood. In time, doctors will not only treat the body to kill the cancer, but will treat the mind which suffers the consequences of the disease long after the body has healed. When you’re depressed it can feel like you are barely existing. By obtaining the correct medical intervention and learning better coping skills, however, you can not only live with depression, but live well.

A Note on Helping a Loved One with Depression

Perhaps you are reading this because you’re concerned about a loved one who might have depression.   You may be wondering how you can help. For people who have never experienced the devastating depths of major clinical depression, it may be difficult to understand what your loved one is going through. Depressed people find it hard to ask for help, so let your friend or family member know that you care, you believe in them and that you’re there for them.

The best thing you can is to listen. Don’t offer preachy platitudes about things never being as bad as you think, or suggesting the person snap out of the depression. Our culture doesn’t encourage people to talk about their emotional pain. We’re taught to suppress our feelings, not to show weakness, to get over things quickly. Most people, when they feel upset, benefit greatly by talking to someone who listens with empathy and without judgment. Most of the time the person who is depressed is not looking for advice, but just knowing that someone cares enough to listen deeply can make all the difference.


*References: American Psychiatric Association. Diagnostic and statistical manual of mental disorders, 4th ed (DSM-IV). Washington, DC: APA, 1994; and, International classification of diseases and related health problems, 10th revision. Geneva, World Health Organisation, 1992-1994.

Words Matter: Why Cancer Isn’t a Game of Winners or Losers

Are you “battling” cancer? Do you know someone who has “lost their fight” with the disease and died?

It seems whenever we hear a story about someone with cancer, war metaphors are never far behind.  Cancer battles must invariably be bravely fought, won, or lost.  Using this metaphor implies that if a patient fights hard enough and/or long enough, he or she will be able to “win the war.” The trouble with using this particular kind of metaphor to describe cancer is it puts the burden of healing on patients by turning them into winners and losers.  As breast cancer blogger, Nancy Stordahl, writes in What Does Beating Cancer Mean Anyway? ”Struggling to live up to some gold standard of what beating cancer means, adds to the already exhausting burden. We need to stop patronizing and judging cancer patients based on misguided battle talk analogies. Cancer isn’t an opponent in some war game you can stomp out by mindset or determination.”

Besides, the battle metaphor takes no account of the sheer randomness of the disease. Using a statistical model that measures the proportion of cancer risk, across many tissue types, scientists from the Johns Hopkins Kimmel Cancer Center published a study in 2015 which concluded that two-thirds of the variation in adult cancer risk across tissues can be explained primarily by “bad luck.” In other words, a major contributing factor to cancer is in fact beyond anyone’s control. For the most part, we don’t know why one person is alive 10 years after the diagnosis of advanced cancer, whereas another dies within months.

By this reasoning, no amount of fighting or battling cancer can affect its outcome.  Commenting on the study, the researchers said, “Many people have found relief in this research. Cancer has a long history of stigmatization. Patients and family members frequently blame themselves, believing there was something they could have done to prevent their or their family member’s cancer. We have heard from many of these families and are pleased that our analysis could bring comfort and even lift the burden of guilt in those who have suffered the physical and emotional consequences of cancer.”

Cancer is a disease; not a military campaign

Cancer is a disease; not a military campaign. In the words of patient and caregiver Jana Buhlman, “it’s a disease that people manage.”  Cancer is a complex disease. Yet there still exists a prevailing attitude to cancer which treats survival as though it were somehow an act of will.  You’ve got to be strong, remain positive and be courageous to overcome the disease.  Clodagh Loughrey, who was diagnosed with breast cancer nine years ago, explains, “I was absolutely petrified at the time, the opposite of strong or courageous, and to be also made to feel guilty for being scared by well-meaning exhortations to be ‘be positive’….people mean well and I didn’t want to sound ungrateful for the support as it is far worse (and easier for them) to avoid people with cancer, and some people did.”

What other diseases or condition do we say this about? “Do we fight a heart attack or a stroke? Are we told in any other illness to “keep fighting”? asks Jo Taylor, Founder of After Breast Cancer Diagnosis.   The fact is cancer doesn’t care how courageous or positive you are. Patients are in remission because treatment eliminated every cancer cell from their bodies, not because the patient fought courageously or was endlessly positive.  As a patient who is currently NED (i.e. no evidence of disease) I didn’t fight any harder than anyone else with this disease. I haven’t “beaten” cancer. I don’t know for sure that cancer will not come back again.

Cancer isn’t a game of winners and losers

I’ve lost count of the number of times I’ve read about patients who are in remission from cancer, having “won their fight” against the disease. Journalists in particular seem incapable of writing about a person who has died from cancer without resorting to the “lost fight” cliché.  Julia Barnickle, who is living with metastatic breast cancer, points out that while she doesn’t like the term personally, “I have no problem with cancer patients using fighting talk. However, I do object to the media using it, especially in the situation where someone is said to have “lost their battle with cancer.” It’s simply a hackneyed way of grabbing attention.”

Does this imply that patients in remission have somehow done more than those who aren’t in remission?  Or that cancer progression or death from cancer is somehow an indication of failure – of not having had the ability to fight and defeat the enemy?  “It seems,” in the words of breast cancer blogger Maureen Kenny, “if you’ve got cancer you’re almost always seen as battling or fighting it, more often than not bravely. We never hear of anyone dying of the disease after a lacklustre, take or it or leave it, weak-willed tussle.”

Cancer shouldn’t be reduced in this way to a game of winners and losers.  Commenting at the time of the death of film critic Roger Ebert, Michael Wosnick, wrote: “The use of the word, “lose” is like a zero-sum game to me: if someone or something loses then that means that someone or something else wins. You can’t have a loser if you don’t have a winner. We should not so easily give cancer that kind of power over us.”

If someone has lifelong hypertension and dies from a heart attack, do we say in the obituary that they lost their battle with high blood pressure? Then why do so many deaths from cancer get reported this way? While it’s not quite “blaming the victim”, it does have an implicit element of somehow placing the ultimate responsibility for having died in the hands of the deceased.

When words blame

Oncologist, Dr Don Dizon, tells a story about taking care of a young patient with ovarian cancer during his first year as an attending physician at Memorial Sloan Kettering Cancer Center. The patient had just relapsed from first-line treatment and in his discussion with her about the next steps, Dr. Dizon explains that, “despite the failure of first-line treatment, there are many more options for you.”

The doctor was stunned by the patient’s tearful reaction to his words: “You make it sound like this was my fault, like I did something wrong!” she said. “I’m sorry I failed chemotherapy, if that’s what you think, and I’m sorry I disappointed you.”

It’s a lesson Dr. Dizon has never forgotten, as he describes in his own words: “It was never my intention to place ‘blame’ on something so devastating as a cancer recurrence, and I certainly did not mean to imply that she had failed. These many years later, I still consider this encounter a watershed moment in my career as an oncologist.”

The “battle with cancer” may be “only a metaphor” but it stands for a quite destructive attitude that, to the extent it influences doctors as well, distorts the treatment of cancer too.  In a JAMA Oncology article, the authors discuss how “the continuous urge to win the battle extends to oncologists, who actively treat patients for too long. The fact is that 8% of patients receive chemotherapy within 2 weeks of dying of cancer, and 62% within 2 months. Late chemotherapy is associated with decreased use of hospice, greater use of emergency interventions (including resuscitation), and increased risk of dying in an intensive care unit vs at home. This all clearly reflects our society’s need to battle until the end.”

Embracing a fighting spirit can work for some patients

This isn’t to deny that some cancer patients embrace a fighting spirit as a way that helps them feel more in control.  Cancer survivor, nurse and educator, Beth Thompson describes how “identifying as a shorn ‘warrior’ psyched me up for and pushed me through treatment.”  Sara Turle, a 9-year survivor of cancer, also found resonance in the metaphor. “For me I was never battling cancer: it’s a disease, but I was definitely battling how I managed diagnosis and particularly getting through the side effects of treatments,” she explains. “It helped me to look at each stage and at times each day and even hour, at worst points, with a view of getting through, surviving and celebrating with just a simple acknowledgement. It truly helped me feeling that achievement and it helped with knowing that I was going to have to face it again.”

Professor Elena Semino and her colleagues have been studying the use of metaphors in the way we talk about cancer since 2012. As part of their research they have analysed 1.5 million words taken from interviews and online forum discussions involving cancer patients, family carers and health professionals. The team found that the type of metaphors people chose to use when describing their cancer reflected and affected how they viewed and experienced their illness. “For some patients, some of the time, the idea of being engaged in a fight is motivating,” explained Sermino. “Some people say with pride that “I’m such a fighter”, and they find a sense of meaning and purpose and identity in that. The study showed that we are all different, and different metaphors work for different people, and at different times.”

I agree. I’m not criticizing individuals who draw strength from calling themselves fighters.  Everyone is entitled to use whatever language they want to describe their own experiences. As Sara says, “My belief is that the right language is what is right for the individual person and I would hate to think that people who do find this language helps, feel that they can’t openly use for fear of what others may think. Whatever language gets you through is the right language for me. I am very mindful of when speaking to people now to be sensitive to the language they are happy with and these discussions of differing views have helped me with this.”  Beth agrees and asks, “Can we educate while still leaving room for what works for the individual experience of cancer?”

Wrapping Up

If you believe, as many patients do, that the words we use to describe cancer matter, how then should we begin to conceptualize it? Stephanie Sliekers asks a similar question in this HuffPost article, “If cancer really is the ‘enemy’, what’s the best way to beat it?” Her answer? “By studying and understanding it as it is, a disease borne out of human blood, tissues and genes, a disease that lives within us whether it is treatable or fatal.”

Perhaps, rather than speaking of cancer in militaristic terms, it’s better to communicate that we are “living with cancer” for as long and as well as we can. And when a person dies, let’s not say he/she has lost anything, but rather that person has died after living with cancer for a period of time.

Words matter a great deal in life, death, and everything that comes in-between. To quote Dr Dizon “Words are powerful and despite our best intentions, can hurt—this is true in life, and it is true in oncology.”

Patient Participation in Research: Towards Meaningful Engagement

“If patient engagement were a drug, it would be the blockbuster drug of the century and malpractice not to use it.” Leonard Kish

Have you detected a recent upsurge in activities concerning patient engagement in health research? If you are involved in patient advocacy, you may be increasingly aware of discussions around the importance of patient-oriented research. However, despite strong acknowledgement of the benefits of engaging patients in research, gaps still exist between the theory and the practice of patient engagement.  This article explores the ways in which patient participation in health research can move beyond rhetoric towards activity which results in research better aligned with meaningful patient outcomes.

What is patient participation in research?

You may notice that there is a wide range of terms used to describe patient oriented research.  Depending on which country you live in, you’ll hear a variety of terms from “patient/public/service/user/engagement,” to “participatory research,” “patient and public involvement,” and “co‐researcher/ co‐investigator.”

While there may not be a consensus for the terms used to describe patient oriented research, there is one fundamental concept that sets it apart from traditional research. In the past, patient participation was limited to involvement as research subjects. Research was undertaken by researchers to and for patients.  When patients are actively engaged, research is undertaken jointly with them.   This is an important step in ensuring that the real-life experiences of patients are considered in determining research priorities that are most relevant to patients themselves.

Why should you engage in health research?

There are many reasons why you may want to get involved in health research. Perhaps you wish to understand the research behind your disease and hope that involvement will give you direct access to knowledge of new treatments. You may also want to find a way to put your personal knowledge of the healthcare system and your experience of your condition to good use. In this way you can play a part in improving care for other patients. Those patients who take an active part in aligning research with real-world needs of patients and caregivers report feelings of increased self-confidence. By developing a stronger advocacy voice they feel more empowered, respected, and valued.

By engaging in research you can broaden the agenda beyond that set by health professionals and researchers. As someone who directly experiences illness and medical care, you can bring the perspective of what it is like to live with a disease. You’re uniquely positioned to contribute to research by sharing important ideas about what research would be most beneficial to you and other patients like you.  

How can you get engaged in research?

Patients can be engaged across a spectrum of research from planning and priority setting to disseminating findings. The deeper the degree of participation, the greater the influence you will have in decision making.    Becoming involved at the outset of the research project means you can identify relevant research questions and meaningful study endpoints.

Historically, researchers have framed questions which are not particularly relevant to patients. As an example, the research priorities of patients with osteoarthritis of the knee and the clinicians looking after them, were shown in a study to favor more rigorous evaluation of physiotherapy and surgery, and assessment of educational and coping strategies. Only 9% of patients wanted more research on drugs, yet over 80% of randomized controlled trials in patients with osteoarthritis of the knee were drug evaluations.


Research Stage 

Level of Involvement

Identifying/Prioritizing Determining the research topic, alignment of priorities, and identification of research questions.
Design Ensuring that the research methods are sensitive and appropriate for study participants.
Management Recruiting study participants; conducting interviews; being an active member of a steering group.
Data Analysis Highlighting findings that are most relevant to patients; summarizing the research for lay audiences.
Dissemination Improving access to patients via peer and social networks and accessing difficult-to-reach patient groups.

How do you know if participating in research is right for you?

It’s important to understand the reasons why you are being asked to take part in a research project. You and the research team should have a shared and clear understanding of what you are being invited to do.  Sometimes researchers look for patient participation to fulfill a funding requirement, without being clear about the role that patients will actually take.  Without a clear understanding of what meaningful engagement looks like, researchers may end up including patients solely to tick a funding box. Taking part in this kind of tokenistic research can be extremely unsatisfying and leave you feeling undervalued and frustrated.

Asking the following questions of the research team can be useful to help you decide whether or not a particular research project is right for you.

  • What level of involvement do you want from patients?
  • What change can happen as a result of this engagement activity?
  • What is my role? (Ask for a written “job” description.)
  • Are there any particular skills you are looking for? Do I need to understand research methodology, acronyms, and technical language? Will training be provided if I’m not familiar with research processes?
  • What is the time commitment you will expect of me? (You should take into consideration your other work or family commitments. For instance will you need to take time off work to attend meetings?)
  • Where will meetings be held? Are there accessibility issues you need to be aware of?
  • What preparatory work will be required to carry out in advance of meetings (e.g. pre-reading?)
  • How will I know if my input is incorporated in the research findings?
  • If my feedback isn’t used, will you share the reasons why not?
  • Are you paying patients? (Reimbursements for out‐of‐pocket expenses should be viewed as an absolute minimum.)

If you’re not satisfied with the answers you receive to these questions, then you should consider whether the project is something worth giving up your time for. Participating in research is time-consuming and sometimes it can be emotionally and physically draining. Consider too at what point you are in your own health journey. Will participation in research place an added burden on your treatment or recovery?  In making the decision to become involved in research, you should always balance your own health needs with the desire to be supportive of research and the research process. Heed the advice of pediatric neurodisability advocate, Jennifer Johannesen “if there is insufficient effort to justify and substantiate what is being asked of you, or it’s unclear as to why you’re involved, you can decline.”

Meaningful engagement is about shifting the traditional paradigm of patients as passive participants, to one in which we are fully involved as active contributors who have a sense of ownership in outcomes. You need to be able to trust that you are being genuinely heard and your concerns are being acted upon. Look for projects that champion diversity, reciprocal trust, and strong sustainable relationships. Ask for no less than this – research that respects your unique perspective and expertise and values your contribution as an equal partner in the research process.

Patient Advocacy: Ten Tips to Develop a Stronger Social Media Presence

Social media is a powerful addition to our patient advocacy toolbox. We can use it to raise awareness of our cause, build a community of supporters, promote our key messages and highlight our patient advocacy activities. To help you strengthen your online presence and create more visibility for your cause, I’ve put together this list of ten actionable tips you can put into practice right away.

1. Optimize Your Social Profiles

Your social media profile should be considered a key element of your advocacy brand. What will people’s first impression be of you when they encounter your online profile? What might make them decide to follow you?   Review each of your existing social profiles with the following points in mind.

  • Is it time to use a more professional picture to represent yourself online? Upload an image that is clear and easy to see, like a head and shoulders shot, or your organization’s logo. Make sure to upload images with the correct dimensions for each social platform (check out this guide to social media image sizes).
  • You have an opportunity to personalize your profile on Facebook and Twitter by uploading a custom header image. Use this opportunity to bring more authenticity to your account, for example you might use a picture of yourself holding a sign with a hard-hitting message. Or perhaps there’s a project or campaign you are currently working on. If so, include an image to represent this in the header space.

Take Action: Complete all sections of your profile to convey a stronger message and identity.  Schedule a review date every few months to check your information is still current.

2. Focus on Being the Expert One Platform at a Time

Each year brings shiny new social media tools and new features for existing tools. It’s tempting to jump on board the latest social media platform with the aim of being everywhere at once; but rather than spreading yourself too thinly, focus on mastering one or two platforms really well before moving on to the next one.

Take Action: Look back on the past six months and ask yourself which social media platform worked best for you? Which gave you the most engagement? And which platform had the least engagement? Consider focussing your efforts on the high-performing platform and becoming known as the go-to expert on this channel before adding anything new to your social media mix.

3. Schedule Your Social Media Posts

The internet is global and if you want your message to reach further than your own backyard, you need to hit multiple time zones. Tweets have the shortest lifespan of any social media post. Even though the latest Twitter algorithm means that posts are no longer displayed chronologically, Twitter is fast-paced, and messages get buried quickly. To counter this, you need to share your post multiple times on Twitter to increase visibility. Scheduling tweets allows you to reach followers when they are most likely to be online (even if you aren’t there at the same time) and allows you to maintain a regular and consistent online presence.

Take Action: Use a scheduling tool like Buffer or Hootsuite to schedule your updates to reach more people, more often. Don’t just post the same update every time. Vary your updates by changing around the headline, highlighting a statistic or quotation or adding different images.

4. Curate Content

The ability to curate credible content to share with our communities is a key skill for patient advocates. Hereditary cancer advocate, Amy Byer Shainman believes “patient advocates not only have a responsibility to curate trusted content but that it is an imperative if you are even going to be calling yourself a patient advocate.”

Content curation is defined as the process of gathering information relevant to a particular topic or area of interest.  While this definition sounds simple, there’s a world of difference between simply gathering information and being an effective curator. A good curator knows how to find, aggregate, and synthesize reliable information, putting it into context for their communities and sharing it in a format that is easy to access and understand.

Take Action:  Set up Google Alerts for the healthcare topics of interest to you.  Google Scholar is also useful as it indexes most peer-reviewed online journals of Europe and America’s largest scholarly publishers.

5. Create Visual Impact

You’ve surely heard this before, but it’s worth reiterating: images matter — a lot. In an age when people’s attention span averages 8 seconds (that’s shorter than a goldfish!) visuals are memorable and effective because they help people process, understand, and retain more information more quickly.

Visual content is 40x more likely to get shared on social media than other types of content according to research by Buffer. Furthermore, people connect more emotionally with images than text, and in an increasingly crowded digital landscape images can break through the online content clutter. The type of visual assets you can create include images, videos, infographics, quotes and GIFs.

Take Action: Add an image to all your online posts — even those that are text-based. Create a strong visual identity and maintain consistency across all your images by sticking to the same colours, fonts, and layouts. Read How To Create Professional GraphicsEven If Youre Not a Graphic Designer for more tips.

6. Use Relevant Hashtags

Hashtags are a powerful way to increase your visibility on social media. According to Twitter’s own research tweets with hashtags show a 100 percent increase in engagement (clicks, retweets, likes and replies).  Jo Taylor, a moderator of the UK-based breast cancer Twitter chat #BCCWW, explains that “finding disease hashtags opens up connections. If you connect with others you will be able to meet others easily online and you will build and learn from there.”

Take Action: Visit symplur.com to find the relevant hashtags for your disease area. If you can’t find a hashtag related to your topic, you might consider creating your own. For more information on using hashtags strategically read Everything You Ever Wanted To Know About Hashtags in Healthcare…But Were Afraid To Ask!

7. Live-Report Conferences and Events

Reporting live from an event is a way of engaging your followers by sending updates about an event as it occurs. It allows you to expand the reach of in-person events to provide valuable insights to those who are unable to attend in person. It’s also a way to increase your visibility as an attendee and enhance your credibility.

Live reporting tools include live-streaming using Facebook LiveInstagram Live, and Periscope (Twitter’s live-streaming app).  You can also share posts to your Facebook page and share photos and video clips via Instagram and Snapchat during the event.

Take Action: Read The Advocate’s Guide to Reporting Live from Conferences and Events for more tips on live-reporting.

8. Take Part In Twitter Chats

Twitter thrives on its community and the more you connect with other users the more quickly you will grow your own following. Joining a Twitter chat is a super way to connect and engage. When you attend a Twitter chat regularly, people will get to know you and in this way, you can quickly develop and grow your own network of supporters.  If you’re not familiar with them, a Twitter Chat is a public Twitter conversation around one unique hashtag. This hashtag allows you to follow the discussion and participate in it.

Twitter chats can be one-off events, but more usually are recurring weekly chats to regularly connect people, for example #PatientChat held every other Friday at 10:00 am Pacific/1:00 pm Eastern. The chat will be hosted and the host will ask questions along the way to stimulate discussion and sharing of ideas. There are chats for most disease topics and a full list can be found by searching the database of the Healthcare Hashtag Project. This is also a useful resource to find Twitter users to follow. In addition you will find past transcripts of chats on the website so you can familiarize yourself with the chat and its norms before taking part.

Take Action: There are chats for most disease topics and a full list can be found by searching the database of the Healthcare Hashtag Project. And “if you can’t find a tweet chat you enjoy,” recommends patient advocate, Annette McKinnon, “start a new one, register it @symplur and build a new community.”

9. Create a YouTube Channel

People engage with video more than any other form of content (written, audio, images, etc.). YouTube with more than 1.8 billion monthly active users remains the online video leader. 4 million YouTube videos are viewed every day, and the average session duration of 9 minutes and 28 seconds. That’s more than many other social networks.

Take Action: While producing your own video may seem daunting, video creation has never been more accessible through smartphones.  You can also create simple videos for your channel using free tools such as Adobe Spark and Lumen5 (see my YouTube channel for examples of Lumen5 videos).

10. Maintain a Consistent Content Creation and Promotion Schedule

Social media is an ongoing commitment. You need to post consistently to stay in front of your audience’s eyes and keep growing.  One key to maintaining a steady stream of quality content is to re-purpose what you already have. Check your blog’s analytics (or Twitter and Facebook analytics) to see the most popular posts you’ve written or shared.  Can you expand on these to include new research or thinking? Perhaps the content can be turned into an infographic or a slide-deck.

Take Action: Set aside one day each month to map out upcoming cause awareness days. Then use a simple excel spread sheet to create a calendar for social media postings. Include relevant hashtags and images.  A content calendar helps you maintain a consistent content production schedule, enabling you to plan for seasonal content, and annual campaigns.

Social media is an ever-evolving and fast-moving field, and with so much to learn and do, it’s easy to feel overwhelmed. You don’t have to implement all these tips at once. Try adding one new strategy to your social media plan each week and measure its impact at the end of each month. This way you will know which of these strategies are moving you closer to a stronger online presence.

Here’s to your social media success!

 

Tips on Finding a New Job or Changing Career after Cancer Treatment

In this three-part series, I’ve been exploring different aspects of returning (or continuing) to work after a cancer diagnosis. So far I’ve tackled issues from preparing to return to work and handling your workload, to dealing with problems such as fatigue and concentration.  In the final part of this series, I’m turning my attention to finding a new job after cancer treatment has ended.

There are a number of reasons why you might be looking for a new job after cancer. Perhaps you crave a fresh start, somewhere where you’re not known as the co-worker with cancer.  Or perhaps you need more work flexibility – such as the option to work part-time –  but your current employer isn’t in a position to make the adjustments you need. Or maybe you want to change career, switching direction towards something more meaningful and fulfilling.

Whether you’re looking for a new job or considering a new career direction, this month’s article has plenty of practical advice to help you.

1. Get Clarity on Your Direction

A good place to start is by getting clear on your new goals, financial needs and current skills and abilities. Grab a pen and some paper and take some time thinking about your responses to the following questions.

  • What are my core skills and strengths? Am I using them to their fullest in my current (or previous) job? Which skills and interests from my previous jobs will transfer over to a new position or field?
  • What new insights or skills have I gained through cancer? Do I want to be able to use these in my job?
  • Have my career goals changed? Do I want to work in a similar job but with more work-life balance? Or do I want to try something new?
  • Do I have the required skills for a new career interest? Will I need to retrain? How will this impact me financially?
  • Do I have the stamina to take on something new? Do I need to consider the impact of any long term side-effects from treatment on my ability to work?

2. Update Your Resume

The next step is to get your resume in order.  If it’s been several years since you last applied for a job, you may need to take into account that resume writing has changed quite a bit in the past decade. For example, the chronologically based resume (listing job titles, companies and dates in chronological order), while still popular, is giving way to a more dynamic skills-based one.   This is good news if you want to work around a gap in your employment history.  For a skills-based resume, you will create a relevant summary of your skills, career accomplishments and career goals and position this directly below your name.  You should aim to provide an example of an area of accomplishment related to each specific skill.

Pro Tip: When it comes to including employment dates, don’t include months in the dates, only years. This helps narrow the work gaps.

3. Develop Your Network

Make a list of everyone you know who is currently working in your industry or the industry you’d like to be in. Take a strategic approach by setting achievable goals for the number of people you want to connect with every week. Reach out to them and tell them about your plans to find new work or change career direction. Ask them to keep you updated of any new job openings and leads. Hiring managers are more willing to consider you for an interview after a personal recommendation.

Pro Tip: When it comes to building your professional network there’s no better tool than LinkedIn. LinkedIn multiplies your existing personal and professional networks by making the connections of your connections available to you at the touch of a digital finger.

4. Optimize Your LinkedIn Profile

Your LinkedIn profile is the cornerstone of your professional brand online. While you may already have a profile on the platform, is it optimized for a job search?   LinkedIn profile optimization simply means that your LinkedIn profile is fully updated to maximize your visibility on the platform. Everything you do on LinkedIn begins with your profile. Yet many professionals still treat their LinkedIn profile as little more than a place to park their resume and promptly forget about it.

You won’t be effective at LinkedIn networking if your profile doesn’t entice people to get to know you. Here are some quick tips to optimize your profile (for a step-by-step guide with more detailed information, click here).

  • Make your first visual impression count by displaying a high-quality professional photo.
  • Adding a background image directly behind your photo will help brand your profile. Think of it as your professional billboard.
  • Create a strong professional headline. This is a critical step because your professional headline is not just highly visible on LinkedIn, it’s also searchable by Google.
  • Nurture your LinkedIn relationships through regular engagement. This is not about making large numbers of contacts; rather, it’s about making meaningful connections.
  • Join industry relevant groups. Job openings are often posted by recruiters in industry groups. You will find groups by clicking on Interests > Groups from your profile or searching keywords to identify groups with interests similar to yours.
  • Become an active and engaged user. When you log into LinkedIn, notice each time who shows up in your home feed. Most likely you will see the same few people. These individuals are getting more visibility because they are more active. If you make the commitment to become more active in your network, you will increase your visibility
  • Be strategic about when you’re active on LinkedIn. As a general rule, LinkedIn users are most active right before and after work (7–8 am and 5– 6 pm), as well as during lunch time.

Pro Tip: Don’t be afraid to use social media to your advantage: if you know the hiring manager’s or recruiter’s name, add them on LinkedIn.

5. Mind Your Digital Footprint

Employers are increasingly carrying out social media checks on prospective employees. Anticipate this by googling yourself to see what turns up.  Here is where a professional profile on LinkedIn can be enormously helpful to present the best impression. Because of the way Google’s search algorithm works, an optimized LinkedIn profile will frequently show up in the first few places of a Google search for your name.

While LinkedIn is an asset, other forms of social media may harm your search for a new job. Sharing personal information about your treatment through a blog, Instagram, Twitter or Facebook is publicly searchable by potential employers.  Many of us turn to social media sites and blogs to keep our families and friends updated on our progress and to seek support during cancer treatment.  But when your focus returns to work, you may not want your employer or prospective employer to know of your cancer history.

Pro Tip: Take some proactive steps to protect your privacy online.  Set privacy settings on things like Facebook so that nothing can be seen by people who aren’t “friends” (including pages you are a fan of – an often forgotten detail). Delete what you can from your postings on Facebook and other media that talk about your cancer. Set up a Google Alert to monitor mentions for your name.

6. Handling the Job Interview

A job interview is stressful at the best of times, but when you’re anxious about handling the question of cancer, it’s doubly so. Sixty-one percent of cancer survivors looking for a job said they fear disclosing their cancer diagnosis will negatively affect their chances of getting hired.

Rehearsing what you plan on saying ahead of time greatly reduces any anxiety you may feel. The more prepared you are before the interview, the more relaxed and at ease you will appear during the interview. Draw up a list of potential questions and practice your answers.  Accentuate the positive. For now, put aside your worries about how to explain the gap in your resume and spend some time focusing on why you are the right person for the specific job that you are applying for. List at least ten great qualities and skills you have and ask friends and family to help you brainstorm more. Try to find a willing friend or family member who will role-play the interview with you.

Remember you don’t have to disclose your cancer history either on your application or during an interview. The Americans with Disabilities Act prohibits employers from asking job applicants about a disability (this includes cancer) before offering them the job.  However, you may decide you want to be upfront about a work-related absence. If this is the case, you can deal with it by briefly explaining you had some time off work for a health (or family) related reason, but that’s behind you and you’re now looking forward to re-joining the workforce. Keep it simple, stick to one sentence or two and don’t be tempted to digress. Then switch the direction of the questioning back to your skills and qualifications for the job.

Pro Tip: Do your research before going into an interview. By showing off your knowledge of both the company and the industry, you are conveying to the interviewer that you are still up-to-date even if you have been absent from work for a period of time.

7. Considering a Career Change

Cancer changes your outlook on life.  Alongside an increased awareness of the preciousness of time, you may also have decreased tolerance for spending time on meaningless tasks. Many cancer survivors, my own self included, have felt a calling for more meaningful work after their treatment has ended.    I’d like to finish this back-to-work series by sharing the stories of three such people who have used their cancer experience as a way to help others and forged new careers in the process.

Jennifer Elliott was a pre-kindergarten to elementary school age music teacher before being diagnosed with bilateral synchronous breast cancer in 2014. Since her diagnosis, her focus has shifted to patient advocacy.  “My advocacy began when I realized that my access to industry trained people, thanks to where I live and who my friends are, was impacting my care in a positive way,” said Jennifer.   “That made me angry, because we should all have equal access to quality care.  I’m now applying to graduate degree programs in public policy because, as I’m advocating for breast cancer survivors I’ve learned that all the things I’m advocating for are impacted or dictated by policy and if I want to have the broadest impact I need some policy skills and training.”

Terri Coutee was focused on a life-long dream of completing a Master’s program in teacher leadership when she received news of her second breast cancer diagnosis. “The diagnosis was the catalyst to evaluate my professional career,” explained Terri.  “I had to focus on my treatment and major surgery over a period of seven months. This gave me time to re-evaluate, research, and refocus. I learned less than 25% of women and men were not being given their options for breast reconstruction after mastectomy. As a life-long educator, I realized I could educate those affected by breast cancer and learn from my experience. A blog about my successful breast reconstruction experience led to opening a non-profit Foundation to educate a global audience through social media, attending medical conferences, and making as many personal connections as I could to assist others through their own journey. The need is endless because we haven’t found a cure for breast cancer, yet. Until we do, I will continue to educate and provide resources for the very best medical care for others faced with mastectomy.”

At the age of 51, Chris Lewis wasn’t looking for a career change. “I was working for myself and was at the peak of my earning power,” he said. “Then a poor prognosis of incurable blood cancer and my life was turned upside down. I have since had many years of complex treatment meaning I could not return to employment of any description. As my survivorship moved from months to years I needed a purpose. My body was in bad shape but I still had a business mind.”

Unhappy at the poor resources and help for people living with cancer, Chris took to the Internet to voice his displeasure, leading to him running his own successful website Chris’s Cancer Community.  “This led to me becoming a global expert speaker and writer”, said Chris. “I am self-taught in social media and an award winning writer. As a patient advocate I speak at many high profile conferences. Cancer has taken a lot from me, but has shown me a new way of life I would never have experienced. The big bonus is the incredible people I get to meet and talk to daily. It seems even at my age I have found a new career!”

 

The Best of 2018

As 2019 begins, we would like to take a moment to highlight a few of our most popular posts from 2018 and to thank the people who contributed to the popularity of these posts. We cannot thank the authors and organizations enough that have contributed to make 2018 one for the books, such as Marie Ennis-O’Connor, Casey Quinlan, and Jennifer Lessinger. Your efforts to Patient Empowerment Network are greatly appreciated!

January

5 Ways to Have a Productive Day With a Chronic Illness

This post is designed to stop you in your tracks, and provide you with practical ways to have a productive day with a chronic illness.

Patient Advocacy: Understanding Your Illness

Marie Ennis-O’Connor teaches you which questions you should ask your healthcare team and where to find reliable and trustworthy information to become better informed about your health condition.


February

The 7 Habits of Highly Effective Patient Advocates

This blog from Marie Ennis-O’Connor will help you to get motivated to reach your patient advocacy goals.

Negotiating Cancer: Tips From One Who’s Done It

Stefanie Joho shares what she has learned from her cancer journey and how it made her become a patient advocate.


March

Grief, Loss, and The Cancer Experience

Marie Ennis-O’Connor shares her top ten ways to cope with cancer grief.

What’s a Patient Scientist?

At the  Patients as Partners conference in early 2018, the term Patient Scientist was introduced and Jack Aiello shares what that means for him.


April

Everything You Ever Wanted To Know About Hashtags in Healthcare…But Were Afraid To Ask!

Marie Ennis O’Connor explains how to find, create, and use health-related hashtags to boost your patient advocacy.

MPN Patient Story: Ruth Gerwin

Ruth Gerwin shares her story and how MPNs have affected her.


May

What Does It Mean To Be An Empowered Patient?

Marie Ennis-O’Connor explores what it means to be an empowered patient today.

Patient and Advocate Profile: Hannah and Carrie Ostrea

Carrie Ostrea shares her daughter’s story and what lead her to start the Little Miss Hannah Foundation.


June

Patient Advocacy: Six Steps to Craft a Compelling Message

Patient advocacy involves sharing your unique knowledge and experience to raise awareness and influence people to create a desired change. Marie Ennis-O’Connor shows you the steps you should take to create a compelling message to get your key issues across.

Patient Profile: Peter Blaze Corcoran

Prostate cancer survivor Peter Blaze Corcoran shares his story and what his disease has taught him.


July

Sleep Deprivation Caused By Cancer

The average adult requires at least 7 hours or more of sleep each night to maintain general good health and well-being, but that can be a challenge for cancer patients. Here are some tips to improve your sleep.

Coping with Scanxiety: Practical Tips From Cancer Patients

Cancer patients often experience anxiety about upcoming scans. This blog shares some practical tips for how you or a loved one can cope with it.


August

My Breast Cancer Story

Dr. Janet Maker shares her breast cancer experience and how she had to become an empowered patient.

Patient Advocacy: 15 Winning Ways to Attract More Readers to Your Blog

Having your own blog is a powerful way to boost your online advocacy, but how can you get more readers? Marie Ennis-O’Connor shares her 15 tips.


September

A Patient Engagement Manifesto – 6 Principles of Partnership

Marie Ennis-O’Connor discusses the need to find ways to engage patients meaningfully in healthcare design and then shares 6 guiding principles you can turn to when you are next called upon to take on a patient advisory role.

Reinventing the Clinical Trial: Start at the Ground Level

“We’re still stuck on the slow train when it comes to really reinventing the clinical trial.” In this blog, Casey Quinlan questions how we might challenge that stasis.


October

Beyond Pink: The Other Side of Breast Cancer Awareness and Lessons We’ve Learned From Each Other

Breast Cancer Awareness Month is famously associated with pink everything – ribbons, clothing, yogurt, you name it! In her latest blog, Marie Ennis-O’Connor goes beyond pink and shares lessons learned from fellow breast cancer patients.

Patient Profiles: Breast Cancer Part I

This is the first blog in a three-part series that took a closer look at five breast cancer survivor stories and one caregiver in honor of October being Breast Cancer Awareness Month.


November

Returning to Work After Cancer Treatment Part I – Preparing the Ground

Returning to work after cancer diagnosis can be difficult and often brings mixed emotions. Marie Ennis-O’Connor shares practical solutions for helping with your re-entry into the workplace.

Nancy’s Lung Cancer Journey

In honor of November being Lung Cancer Awareness Month, our board member, Nancy, shared her lung cancer story.


December

5 Ways to Detect Cancer Before It’s Malignant

Like in most diseases early detection plays an important part in the prevention and intervention of diseases, so this blog show you 5 ways to help detect cancer.

Returning To Work During or After Cancer Treatment: Part 2

In this second part of a three-part series, Marie Ennis-O’Connor discusses common concerns on returning to work after a cancer diagnosis.

Beyond Pink: The Other Side of Breast Cancer Awareness and Lessons We’ve Learned From Each Other

It’s October and the pink frenzy is in full force.  Breast Cancer Awareness Month (BCAM) is impossible to miss given the pink ribbon avalanche that arrives each Fall.  While there is no denying that BCAM has played a significant role over the past two decades in raising public awareness of breast cancer, there is  nevertheless growing criticism of its off-balance approach to awareness-raising, with many key messages becoming lost in a sea of “pink-washing.”  Interestingly, some studies have even found that pink branding may actually lead the public to take breast cancer less seriously.

“The biggest issue I have with Breast Cancer Awareness month is that it’s not even really awareness,” writes Elizabeth McKenzie, who was diagnosed with breast cancer in 2012. “Awareness is mindfulness of all aspects of breast cancer, which to a certain respect, is different for all of us, based on medical differences in disease processes, treatment access, and personal, social-emotional and cognitive processes.”

Much of the criticism centers on breast cancer campaigns which over-sexualise the disease, equating breasts with womanhood and femininity. Rod Ritchie, who was diagnosed with breast cancer in 2014, points out that “October is a bad time for male breast cancer survivors because the trivialisation and sexualisation of the disease by the pink charities reinforces public awareness that breast cancer is gender specific. Since there’s little attempt to educate men that they need to be aware of symptoms too, we are diagnosed later and have a poorer prognosis. So, how about adding some blue to the pink, encouraging research on us, and screening those with a genetic propensity?”

Over a decade ago on an October morning, I was diagnosed with breast cancer; a double reminder each year of the role this disease has played in my own life.   Looking back, I now see that my view of breast cancer was one-dimensional. Standing today on this other side of cancer I see a broader picture, a richer landscape of many shades beyond pink. This post is intended to provide a truer picture of the lives of breast cancer patients in its many varied hues.  Wherever you are in your experience, whether you are caring for a loved one, recently diagnosed, finished treatment, or living with a recurrence or metastatic cancer, I hope this post will speak to you.

Lessons We’ve Learned From Each Other

Some of the most valuable lessons I’ve learned about breast cancer have come, not from my doctors, but from fellow patients. My doctors didn’t tell me about the effect of chemotherapy on my future fertility. I didn’t learn that treatment could damage my heart. And I finished treatment with no clue about late treatment side-effects or the risk of a cancer recurrence.

While valuing her oncologist’s expertise, Catherine Foy, who blogs at My Triple Negative Life, acknowledges that “within the online breast cancer community there will be someone awake somewhere in the world that can provide support and advice. For example, based on someone I followed I got my Vitamin D level checked which was very low and I am now on supplements. Other examples include creating awareness of late treatment side effects and reducing the feelings of isolation that some may experience.”

Liz O’Riordan, a breast surgeon diagnosed with recurrent breast cancer, and co-author of The Complete Guide to Breast Cancer, also refers to the feelings of isolation she experienced during her treatment. “I felt incredibly alone during my breast cancer treatment. I didn’t meet another patient at any of my chemo or radiotherapy sessions. All my advice was from amazing people on Twitter,” she says.  Liz offers this advice to patients undergoing chemotherapy:  “The two best tips I was given to reduce the side effects of chemo were: (1) Drink. Lots. Even when it taste disgusting. Ideally 3 litres a day. Try flavoured water or cordial. Carry a bottle everywhere you go. (2) Exercise. Walk for 30 minutes every day. You’ll hate me for making you. Some days you may have to stop and spit and pant and retch. But do it. You will feel better for it. And they were right. I did feel better.”

Barbara Jacoby of Let Life Happen agrees that we can learn valuable coping lessons from each other. “Whether it is a question of side effects that one is experiencing from a prescribed medication, or questions regarding treatment options or experiences or procedures, if you query a patient support or advocacy group, you are likely to find more answers and information from those who have had actual personal experiences with these issues. There is no doctor or group of medical professionals that has all of the information about real patient experiences and outcomes like any group of actual patients who have dealt with just about anything and everything imaginable on every level,” she says.

Both Catherine and Barbara believe that the information you get online should be shared and discussed with your doctors as the basis of shared decision making (the conversation that happens between a patient and clinician to reach a healthcare choice together).  “I value my oncologist’s advice and experience,” says Catherine, “and would usually discuss with him any new developments that I may have encountered through the various platforms on social media.”

Terri Coutee, a two-time breast cancer survivor, and founder of DiepCFoundation, a non-profit organization providing information on options for breast reconstruction after mastectomy, also embraces the concept of shared decision making and wants others to experience it too.  “I have had chemotherapy, radiation, two lumpectomies, a double mastectomy and breast reconstruction using my own tissue,” she says. ”Each of these occurrences was fraught with difficult decisions and hours of research to optimize my own health care plan. I left offices of various health care providers with armfuls of brochures and information to sort through and organize.”

Terri encourages patients to download the Breast Advocate App, a new tool to aid the shared decision making process.  The app was developed by plastic surgeon Dr Minas Chrysopoulo, whose patient population is primarily those affected by breast cancer or at high risk of developing breast cancer. “Shared decision making is an extremely powerful approach to deciding our treatment plans. Simply put, it empowers us and helps us advocate for ourselves,” explains Terri.  “As patients, we owe it to ourselves to embrace everyday conversations with our health care teams,” she says. “The information on the Breast Advocate app is informative, intuitive, and specific to your individual diagnosis or situation. There are treatment options with evidence-based articles to discuss with your healthcare team. It even features a community section. I encourage you to check out the wealth of shared decision-making information and download the Breast Advocate app to your phone.”

Siobhan Freeney, founder of Being Dense, an organization which raises awareness of Breast Density and its associated links to breast cancer and screening, was completely unaware of the issue until she was diagnosed with breast cancer. “40% of women have Dense Breasts,” she explains. “A Mammogram is the only way to determine and measure Breast Density.  In Dense Breasts the reliability of screening mammograms can be reduced by as much as 50%.”   When you have a Mammogram, the radiologist reading it can tell if you have Dense Breasts.  Siobhan recommends you should ask for a copy of your radiology Mammogram report and ask if your breasts are dense. “If you have Dense Breasts you need to know and you should ask your Doctor/Radiologist about more personalised screening such as Breast Ultrasound or MRI,” she advises.

Metastatic Breast Cancer: The Other Side of BCAM

Learning about metastatic breast cancer (MBC; also called stage 4, secondary, or advanced breast cancer) from online blogs and social media networks was revelatory for me. MBC is breast cancer that has spread beyond the breast — to the bones, liver, brain, or another organ. Even if the cancer is found in another organ, it’s still referred to as breast cancer. Like Beth Gainer, who says, she learned “that anyone who’s been diagnosed with breast cancer is at risk,” I too have found, in Beth’s words, “what the metastatic breast cancer community has had to say has been a real eye-opener.”

MBC has been referred to as a story half-told, the other side of BCAM we don’t hear enough about. As Catherine points out, “For me, breast cancer awareness month is for those who are not yet diagnosed or those newly diagnosed. The pink scene looks to future research and provides good information for those starting or in the midst of treatment. There is less focus on those of us living or dying with breast cancer.”

Nancy Stordahl is unequivocal in her criticism of the failure each October to adequately raise awareness of MBC. “Despite all the pink, all the races, all the pink ribbons, most people still know little or nothing about metastatic breast cancer,” she writes. “No wonder so many with metastatic breast cancer feel left out, isolated, alone and yes, even erased.”

Joanne Taylor, a metastatic breast cancer patient and advocate, is pushing for more information and awareness of MBC.  She created this infographic to show the red flag symptoms of advanced breast cancer.

While metastatic breast cancer is terminal and cannot be cured, because of improved treatments more women are living longer than ever with it. Even so, many misconceptions and lack of information about this diagnosis persist.    “A stranger called Elizabeth Richards contacted me and like many other women she knew very little about MBC, yet the more she found out, the more angry and amazed she became that the illness was side-lined,” says Joanne. “Elizabeth’s view was that as long as metastatic cancer wasn’t mainstream people would not be aware of the limited treatment options available to them. If they knew, they’d demand more.”

One of the biggest misconceptions is that MBC is an instant death sentence. “We thought with BCAM coming up we would do something different to show how people could live well with MBC, so we started the #busylivingwithmets campaign,” explains Joanne. “Elizabeth had the idea, it was positive, it showed what people can do if they have access to drugs and surgery. I was her inspiration! If I can do it, others can as well – if they are given the right options.”

Lessons of Resilience, Connection, and Hope

Cancer can be a lonely and isolating experience, but it doesn’t have to be. “A friend told me to accept whatever help was offered, says breast cancer survivor Connie Rosser Riddle. “It was her way of saying to quit being Superwoman, that it was okay to be in need, vulnerable. It was best to be specific when folks asked, “What can I do for you?” My answer combined what that person was best at and where I needed help, and that made a good fit for both of us.”

Audrey Birt, diagnosed with breast cancer three times, shares lessons of courage, connection and resilience on her blog.  “Cancer taught me I’m more resilient than I would have believed, it helped make me braver,” she says. “It also taught me that life cannot be controlled. This made me more able to live in the moment, and for the moment.  That’s probably not so good for my bank balance but it’s great for my life balance in a way. It taught me to reengage with writing through my blog and in a funny way it changed my life and connection to others. But it also taught me my fragility and that’s a lesson I’m still learning, one day at a time.”

Ultimately however, the lessons you learn will be unique to you. “There is not a single person, story, book, lecture or talk, which will teach us all we need to know to understand the impact of cancer on our lives. That’s what we have to figure out for ourselves when we go through our own cancer experience,” says therapist, Karin Sieger . “Having been diagnosed twice with breast cancer all I can say is try and stay open minded – to your body, the illness, treatment options. You always have choices. Don’t get stuck in fear and don’t get stuck in complacency either. Live your life to the best of your ability and stay true to who you are – with or without cancer.”

A Patient Engagement Manifesto– 6 Principles of Partnership

Recently I presented at a conference on the topic of patient engagement. I spoke to the audience, mainly comprised of digital technology start-ups, about the need to find ways to engage patients meaningfully in healthcare design.  Too many developers think they understand what patients need, but in reality, many appear to be motivated more by the cleverness of a technology than actual improvements in health outcomes.  A 2015 study from the New York University School of Medicine Department of Population Health reported that only 29% of smartphone owners using health apps say the apps have made a big impact on their health.

In thinking about this month’s blog topic, it occurred to me that it might be useful to have some guiding principles you can turn to when you are next called upon to take on a patient advisory role. Whether it’s a clinical trial, a new app, or improving hospital safety standards, patients and caregivers are increasingly becoming engaged in the design process.  However, not every organization understands how to engage patients in a purposeful way. Frequently patient participation never moves beyond a tokenistic consultation or a tick box exercise. So it’s up to us as patients and caregivers to lead the way and show the healthcare industry what meaningful engagement really looks like.

In my talk, I presented a roadmap to guide developers towards a worthwhile way to engage patients. A roadmap can be equally relevant to you as a patient advocate to guide your participation in the co-design process. Each of the following six principles reflect the value of patients as experts with rich insights and experience. Never underestimate the expertise you bring to healthcare and don’t allow others to minimize your contribution. Lived experience is equal to other forms of knowledge, evidence, and expertise.  Clinicians may be experts in disease, developers in technology, but you are the expert in your own life. You know better than anyone what it takes to live with your condition every day and which challenges you face in managing your illness. Ultimately, it is your insights that will help build a better healthcare system or solution.

6 Principles of Patient Engagement – From the Patient Perspective

1. Engage Us in Ways That Are Personally Meaningful

In an article entitled, Who Gives Us the Right to “Empower” Patients? , the authors point out that the health care system “continues to focus on engaging patients in behaviors that are deemed desirable from a mainly biomedical perspective: taking medications as prescribed, or maintaining a BMI below 25, for example. These desirable behaviors are considered universal, and it is assumed that all patients should engage in them to be optimally healthy. No space is left for individual patient goals, needs, desires, abilities, backgrounds, and other factors that make humans, and humanity, so rich and diverse.”

You cannot design health care solutions or services without taking into account patient values and preferences and the context in which we live our lives. Healthcare is complex; it’s connected to a lot of things which have nothing to do with technology. A failure to recognise the complexity of health systems and the reality of patients’ lives will continue to lead to short-sighted health initiatives.

2. Engage Us Where We Are – Not Where You Wish We Were

The most successful health applications are those that understand the real-life problems that come with living with a condition and creates solutions that meet real life needs. If an application does not solve a problem for the patient, it will not be adopted. As Amy Tenderich, founder of Diabetes Mine has said, “we will use tools that answer our questions and solve our problems. We will avoid tools that help us do what you think we should do and we won’t use tools that add to the work of caring for ourselves.”

Alex Butler, in an article entitled How To Build Successful Mobile Health Applications, wrote, “The question is not, ‘Does it solve a problem for the developer, or even the patient’s clinician?’ The real question is, ‘Does it help the patient directly? ’  If an application is in any way a hindrance, or adds any further time to the investment people must make into their healthcare, it will not be used.”

3. Engage Us Early in the Design Process

A report by Accenture revealed that just two percent of patients at hospitals are using proprietary health apps provided for them. This staggeringly low figure represents an alarming waste of resources. Accenture concluded that hospital apps are failing to engage patients by not aligning their functionality with what patients actually need. For example, only 11 percent of the apps surveyed offer at least one of three functions most desired by patients: access to medical records; the ability to book, change and cancel appointments; and the ability to request prescription refills. If those hospital app developers had worked with patients from the earliest design stages, they would be much more likely to produce an end product that patients would actually want to use.  “Co-design,” in the words of Renza Scibilia in her recent post Co-designing Co-design, does not mean showing a finished product to someone and asking for ‘feedback.’” It’s about involving patients right from the start of the design process.

Similarly, when it comes to research, it’s important that patients frame the research question. Historically, researchers have framed questions which are not particularly relevant to patients. As an example, the research priorities of patients with osteoarthritis of the knee and the clinicians looking after them, were shown in a study to favor more rigorous evaluation of physiotherapy and surgery, and assessment of educational and coping strategies. Only 9% of patients wanted more research on drugs, yet over 80% of randomized controlled trials in patients with osteoarthritis of the knee were drug evaluations.

4. Engage Us in Progress Reports

Genuine engagement is about shifting the traditional paradigm of patients as passive participants, to one in which we are fully involved as contributors who have a sense of ownership in outcomes. However, I’ve lost count of the number of times I’ve been involved as a patient advisor on a research proposal or steering committee and received no updates on its progress.  In her brilliant post, Patient Engagement: You’re Doing it Wrong, Isabel Jordan captures the feeling of being used which many of us feel in this situation. “I traded my family’s story for what, exactly?” she asks, “I don’t know, because I was never informed. Engaging patients means keeping us informed of the results of engagement. What happened to me is harmful. It took me from my home, away from my family, put me in a place of vulnerability, and put me in a place where I wasn’t respected.”

Sue Robbins, another vocal advocate of meaningful engagement agrees, and asks the question “how is it that patients and families are used for their stories and then crudely discarded? Why has even the common courtesy of responding to emails gone?”

5. Engage Us as Equal Partners

I also believe that valuing patients as equal partners extends to paying them for their time and expertise. Not everyone agrees with this position. But if those round the table are being paid, why not the patient who is also sharing their time and expertise? As Annette McKinnon, a founding member of the Patient Advisors Network (PAN), puts it, “patients can work as hard as anyone else in the health professions, and yet they are the only ones at the table with no badge, and who are not being rewarded for their efforts?”

Tessa Richards, writing in the BMJ, puts forward arguments both for and against payment. Whether or not to pay a patient is contextual, however, she is clear that “in a consultation where other experts are being paid for their time, patients and patient advocates should be too, and this should be standardized. My time and experience are as valuable as any other person at the table who is getting paid for being there. It amazes me how often patients are just expected to be thankful to be invited.” To quote melanoma patient advocate, Kay Curtin, “This is a re-shaping in many ways of what are the defined roles in research. We are talking about the patients knowledge and experience being of equal status to that of all the other interested parties on what research grant money should be spent on.”

(Note: The Change Foundation in Canada has developed a useful decision tool to guide organizations on whether to pay “patient engagement participants.”)

6. Engage Us Beyond Our Stories

Jordan is unequivocal when she says, “stop engaging patients if you’re not actually ready to partner with them.  Stop using our stories to get money for your research and your clinical programs. Our stories belong to us. If you’re going to use me, then I’d better be making decisions with you.”

Engaging with us starts with our stories, but it shouldn’t end with our stories. We are so much more than just “the patient story.” Dig beneath the story and you will find that a patient isn’t a disease with a body attached, but a life into which a disease has intruded. Our stories are not pawns to be used and then discarded.  Respect and value them for being, in the words of David Gilbert, Patient Director @SussexMSK, precious ‘jewels from the caves of suffering.’

(Note: PAN provides some excellent tips on its website, for patients and caregivers who are asked to share their story or experiences. It includes the advice to decline to share your story if you are not emotionally ready to do so.)

Final Thoughts:  Be Prepared To Say No

In a thought-provoking and wonderfully—articulated post on the nature of meaningful patient involvement in pediatric neurodisability research, Jennifer Johannesen suggests that “if there is insufficient effort to justify and substantiate what is being asked of you, or it’s unclear as to why you’re involved, you can decline.”  I am in full agreement with Johannesen and find myself increasingly turning down requests to participate in projects these days on this basis.

I firmly believe that a shift away from the rhetoric of patient engagement towards a genuine model of partnership, needs to come from the ground-up. We as patients have to be, in Johannesen’s words the “conscience, and the critical voice.” We need to challenge patient tokenism and push for real outcomes. We need to spur organizations to design solutions that not only work technically, but make a real difference in the lives of patients.   Only then can we hope to see the true meaning of patient engagement become a reality. To steal a line from David Gilbert, “nobody is going to take us seriously if we don’t.”

 

Patient Advocacy: 15 Winning Ways to Attract More Readers to Your Blog

Have you ever had the sinking feeling of pouring your heart and soul into writing something you felt sure people will want to read, only to find this isn’t the case? That, apart from your Mom and your best friend, it feels like no one else is reading your blog?

Having your own blog is a powerful way to boost your online advocacy. Blogging shows your commitment and passion for your cause. It’s also an extremely effective way to build a community and engage more people in your cause. However, it can be disheartening to find yourself with so few readers.

If you want more than a handful of people to discover your valuable content, then this post is for you. I’m going to show you how to find more readers for your blog and promote it to a wider audience. The following tips come from my own experience as a blogger over the past nine years, along with tips from some of the smartest patient bloggers I know. I feel sure you’ll find their advice helpful as you focus on growing your own blog and building your readership.

Let’s get started right away with our first tip.

1. Optimize Your Blog’s UX

Let’s begin with how your blog looks. What is the user experience (UX) like for your readers? How easy is it to navigate around your blog? Susan Rahn gave her blog, StickIt2Stage4, a complete overhaul this year. “I updated the template to something that was more aesthetically pleasing and easier to navigate,” she told me when I asked her for her best tips on creating a better blog.

You should check also to see how easy your blog is to read on mobile devices. Does your site load quickly? A good site will load in 2 seconds. If your blog is taking longer than that, consider that around 40% of people will leave a site if it doesn’t load in 3 seconds (check your blog’s loading time with a tool like Load Impact).

2. Provide Helpful Information for Readers

While your blog may contain personal stories about your experience and that of others, it’s also a good idea to provide helpful resources for your readers. “Having pages that have helpful information such as organizations that offer conferences, support or help in some way – either financial or trips is very useful”, says Susan, “especially if you can personally recommend them.” Susan also suggests including a list of other bloggers that you read and can recommend to readers.

3. Make It Easy For Readers to Find Information on Your Site

Providing helpful information is great, but you also need to be sure that readers can find that information. By adding categories and tags to your posts, you make it easy for readers to find the information they need when they come to your blog. It also increases views on your other posts tagged with the same keywords.

4. Hook Your Readers with a Great Headline

When it comes to writing your posts, spend some time creating a great headline. Your headline is the first (perhaps only) impression you make on a prospective reader. A good headline frames your content. No matter how amazing your content is, few people are going to click through to read it if they’re not immediately captivated by your headline. The kind of headlines which perform best include:

  • “How To” – e.g. “How to Prepare for Surgery”
  • List-Style – e.g. “5 Tips for Dealing with Chemotherapy”
  • Questions – e.g. “What is Chemo-Brain?”

Try adding “power” words and phrases to your headline, (such as best, tips, empowering, challenging) to create more engagement. Download a list of 90 headline power words here.

5. Keep Readers’ Attention with Your Introduction

When you have hooked readers with an irresistible headline, you want to keep them reading. Start by asking a question, or share a striking quote, a startling statistic or a personal story. Don’t make the intro over-long or your readers will quickly lose interest. Aim for around the 100-word mark. Make every word count. Establish your rhythm and pace with those first words – you can slow the rhythm down in the body of your post later if you wish.

6. Add Visual Appeal

We live in a visual world. If content is king, then visual content is queen. And when it comes to creating visual content, don’t be tempted to reach for the nearest stock photo. These days there’s no excuse for using boring stock images. In this post I share some of my favorite places to source images for free to enhance your social media posts. A good tip is to create your own graphics with the title of your blog and/or your name and include it each time you share a link to your blog on social media. People will soon start to recognize your own unique “brand.”

7. Maintain a Consistent Posting Schedule

To create and maintain interest you need to post consistently to be able to stay in front of your audience’s eyes. Dee Sparacio, who blogs at Women of Teal, says it’s important to maintain “a pretty regular schedule so your followers are not visiting your page and seeing an old post.” Barbara Jacoby, of Let Life Happen, told me that the only thing that she has ever done to promote her blog was “to consistently write and post a weekly blog and research and post a daily ‘In the News’ article.”

Nancy Stordahl, the creator of Nancy’s Point, also advocates for consistency. “Try to post consistently if you want to develop a loyal readership,” she says. “This takes commitment (work), which means posting on a regular schedule that works for you. This might be weekly, every other week or monthly. This way readers know what to expect, plus it keeps you focused. I post weekly (usually the same day) because that’s what works for me. Consistency is key.”

One of the best ways to keep a consistent schedule is to create recurring content on your blog. Readers will then come to expect and look forward to this content each week. Examples could be creating a weekly round-up post as I do on Journeying Beyond Breast Cancer, or a Monday Motivation post.

8. Leverage Guest Blogging

Whether you invite a guest blogger to blog on your site, or you guest blog for someone else, guest blogging is one of the most effective ways to increase your blog’s traffic. Not only do you get the opportunity to build your authority and increase your visibility, you can also leverage the social following of your guest blogger when you mention them on social media. Beth Gainer, who blogs at Calling The Shots, endorses this strategy. “Offer to guest post for others’ websites,” she recommends. “I have published several guest posts, and my posts have been shared. It’s a great way of having others notice your blog.”

9. Respond to Comments

Have you ever taken the time to leave a comment on a blog and had no response? It’s disappointing and may well discourage you from commenting again. An active comments section is a sign to others that your blog is a community that cares and wants to help each other. Susan Rahn believes that this kind of interaction is important. “It lets readers know you are paying attention and you care that they are reading,” she says.

Take time to comment also on others’ blogs. “By leaving a meaningful comment on a post, you not only build community with others,” says Beth Gainer, “but others can link to and get to know your blog. I try to leave thoughtful comments on others’ blogs because I am a part of a larger community of writers, and it helps to reach out. As an indirect result of my posting comments, bloggers have visited my site and left comments.”

10. Share Your Content on Social Media

Whether it’s a Twitter, Facebook, Snapchat, or an Instagram account, being active on social media is the best way to share your content with a wider audience. Dee Sparacio first set up a Twitter account with the name of her blog, @womenofteal to share her content. Then she started a Facebook page, again using her blog name. Dee advises setting up a specific page for your blog (and not just sharing via your personal Facebook account). “By having this blog page, I have people who follow me for my advocacy work follow that page and not my personal page.”

Susan Rahn also recommends connecting your blog to all your social media accounts. She has added a blog link to her Instagram bio too. “So all I need to do is create an Instagram post and direct followers to the link in my bio.”

11. Re-Share Older Blog Content

According to Susan, “re-sharing a blog post from time to time that is relevant to current events or conversations has been helpful” in growing her blog. “New followers may not have gone back through archives to read past posts so it’s new content for them,” she points out. This is a super tip. I’d add to this by saying that it’s a good idea to go back to the original post and see if it needs updating in light of current news or developments. Do you need to update a statistic or fact? Is there new research you can add to the post? Or a quote or comment to make it even stronger second time round?

12. Make It Easy To Share Your Content from Your Blog

When more people share your content, you increase the chance of driving more visitors to your blog. Make sure your social sharing buttons are clearly visible. By making it easy for visitors to your site to share your content, you increase the likelihood that they will take this action. To generate even more shares, install Click to Tweet, a handy tool which generates one-click tweet boxes or links that can be shared throughout your blog or via email.

13. Grow Your Online Followers

“Seek and ye shall find,” recommends Terri Coutee, founder DiepCFoundation, a non-profit organization providing information on options for breast reconstruction after mastectomy.   “I hold fast to this mantra even after blogging for over 3 years,” she says. “Just as with any business, bloggers must find who is interested in their content. Look for social media communities talking about what your blog content focuses on and cast a wide net. Don’t rely on just a few hashtags and groups. Visit those hashtags, those groups and see who they are connected to. Friend, like, re-tweet, and follow these people. Share your content across more than your own “wheelhouse” because when you least expect it, someone in one of those groups may need what you’re blogging about.”

The more people who follow you on social media, the more you can amplify your content and increase your social shares. Dee Sparacio recommends @mentioning (tagging) a person or an institution whenever you reference their research on your blog. This not only brings their attention to your blog, but it’s also a way to grow your followers. The key here is to find followers who share your interest and will be most likely to share your content. A great way to find like-minded followers is to join a Twitter chat related to your disease or condition, such as #gyncsm, #lcsm, #bcsm, etc. If you’re new to Twitter chats, you can learn more about how to take part here.

14. Use Relevant Hashtags

Hashtags are a powerful way to maintain your visibility on Twitter and Instagram and boost engagement with your followers.  According to Twitter’s own research tweets with hashtags show a 100 percent increase in engagement (clicks, retweets, likes and replies). Hashtags can also expand the reach of your message beyond just those who follow you to help you grow your network. Be sure to include the relevant hashtags when you share a link to your blog on social media. For more information on using hashtags strategically, read Everything You Ever Wanted To Know About Hashtags in Healthcare…But Were Afraid To Ask!

15. Send an e-Newsletter to Subscribers

Newsletters can help keep your blog top of mind with readers. Use it to send an email digest of your most recent blog posts or notify your subscribers when you publish a new post. “I would advise anyone who wants to increase readership to her/his blog to consider sending out a monthly or weekly email with links to new posts and possibly one or two older ones,” recommends Nancy Stordahl. “I became very frustrated with Facebook’s algorithms because it seemed no one was seeing posts I shared. Having your own email list puts you and your readers in control. In my emails, I also share a couple of articles that have been in the news, or that I think might be of interest to my subscribers. Sometimes I share something personal and I often bounce around ideas. I love my subscribers and always value their input!”

Both Susan and Nancy use MailChimp as their email list provider. “I added a MailChimp widget that would popup to invite readers to subscribe (even though they are very annoying),” explains Susan. “Through that widget, I was able to set up an email blast at a predetermined time after a new blog was posted.”

Some bloggers are reluctant to set up a mailing list because they think it’s going to be a lot of hard work. Nancy has this advice to share: “Mailchimp is an easy setup and it’s free up to 2,000 subscribers. And don’t worry about how many subscribers you have. It takes a while to build a list of readers that truly want to read your posts. The ones that stick around are gems. It’s worth the extra work, for sure.”
If you’re interested in setting up your own email list, read How to Build Your Email List The Right Way to learn more.

Be Real, Be Authentic, Be You!

A final piece of advice is to be yourself and write from the heart. In Susan’s words, “Just be authentic. Be true to who you are. Let readers get to know you through your blog as if they are sitting down having coffee and conversation with you.”

Catherine Foy, who blogs at My Triple Negative Life, echoes Susan’s advice. “Be yourself when writing (as if you are talking/giving advice to a friend),” she says. “Don’t concentrate on follower numbers. Engage with like-minded people through social media or chats, follow people or organizations that you admire. Always be true to yourself and treat everyone online with respect.”

While it may be gratifying to have lots of blog readers, those numbers aren’t really what count. “We write for a reason and purpose,” Terri Coutee reminds us, “Telling your story should ultimately have the end goal of making a difference in someone’s life.” Even if you have only a handful of readers, you still have an incredible power. You have the ability to connect directly with every one of those readers and impact their lives. Perhaps it’s one piece of information which you share that’s the missing puzzle piece that someone needs right at that very moment of reading it.

If telling your personal story is the lifeline that even one reader needs to be able to hold on to hope, then your blog will be a precious gift to the patient community. As writer, Connie Rosser Riddle told me, the thing that sustains her blogging is writing from her passion. “Throughout life, I’ve been fascinated by stories, whether they were ones I read in books, or those of real life unfolding,” she explains. “Sometimes my blog posts concern my experience having triple-negative breast cancer. Those stories come from cancer intersecting with daily life, finding meaning in the moments of coping with reality and discovering beauty along the path.”

If you’d like to learn more about setting up your own blog from scratch, check out this guide.

Patient Advocacy: Six Steps to Craft a Compelling Message

Patient advocacy involves sharing your unique knowledge and experience of a disease or condition with the ultimate aim of raising awareness and influencing people to create a desired change.  This might include speaking at an event, telling your story in the media, or working with an organization to develop new treatment guidelines.  This month’s post will show you the steps you should take to create a compelling message to get key issues across to your audience.

1. Develop Your Key Message

The first step is to work out the key message you want to communicate. Asking yourself the following questions will help you focus on the main issues.

  • Why do I want people to know about this condition?
  • Is very little known about the disease?
  • Are doctors not very good at diagnosing it?
  • What is the impact of the condition for me and for others?
  • What improvements are needed? Locally? Nationally? Internationally?

An effective message is credible, clear and convincing – ideally you should be able to communicate it in less than one minute – for example, “Cancer-related fatigue is poorly understood, but has been reported in 30–50% of breast cancer survivors in the first 5 years after treatment.”  The recommended approach is to have one primary message supported by two or three secondary messages. Write down your core message first. The purpose of the secondary messages is to support the core message and to explain how it can be achieved.

Insider Tip

Patient advocate and blogger, Kay Curtin (@KayCurtin1), who is a stage IV Melanoma patient, suggests taking a look at what other organisations are doing before committing “precious time and resources on replicating what’s already been done.”  Christina Lizaso (@btrfly12), co-moderator of the #gyncsm Twitter chat, agrees. “Look first to collaborate and move things forward vs. starting from scratch,” she recommends, “then think outside of the condition – what is the most important thing for someone who has never heard of it to know?”

2. Identify Your Target Audience

Deciding who your target audience is and how best to reach them is the next step. There are several broad groups you might consider, including other people with your condition, healthcare professionals, the media, legislators or the general public. Which group you focus on depends on what you are trying to achieve.  The more specific you are in identifying your audience, the more effective your message will be. To follow on from my example above, if I want the guidelines for cancer treatment to include cancer-related fatigue, I might want to target healthcare professionals, other patient organizations who are campaigning on similar issues, and organizations like the American Society of Clinical Oncology.

3. Craft Your Message

A persuasive message can be summed up in three words “Make Me Care.” Sharing your story and the stories of others affected by your condition is the most powerful and compelling way you can do this.  As Jo Taylor (@abcdiagnosis) founder of After Breast Cancer Diagnosis says, “your story is everything – it raises awareness and shows the passion behind why you are trying to make change as a patient advocate.” Jo also believes your story connects you to others with a similar story, which in turns helps to build strong networks to bring about change. Dementia advocate, Pablo Barredo (@Diario1Cuidador) points out that stories help create bonds not just with patients but with their caregivers too. “Patients and caregivers want personal stories and people who will understand them, not scientific terms they may not understand,” he says.  “They need to feel connected to someone who speaks their own language and understands them.”

Insider Tip

When sharing your story, author and breast cancer blogger, Nancy Stordahl (@NancysPoint) points out that “you have to be willing to share from your heart. Be real. Be you. It’s all about being authentic. Always come back to that. Allow others to see your vulnerabilities. When others see that you’re authentic, you’ve made it easier for them to care, not just about you, but about your message(s). Once they care they’ll want to learn more.” Antibiotic resistance campaigner, Vanessa Carter (@_FaceSA) agrees that authenticity is key. “You have to keep telling your story from the heart,” she says, “which is not easy when you’ve repeated it for so many years. It takes a lot of practice. I think it’s one of the greatest arts of advocacy.”

Be prepared that telling your story might make you feel emotional and vulnerable, so think carefully about how much you are willing to share before you make the decision to share it.  Let the audience know your boundaries. Be mindful too of boundaries if you are talking about a family member. How conformable are they with you sharing their story or aspects of your own story that may affect them? In Nancy’s words, “each person needs to find her/his own voice over time, figure out what works and feels comfortable for you, and then go with it.”

4. Create a Compelling Call-To-Action

According to the WHO, “you cannot mobilize people unless you ask them to do something. Aim to craft messages that will convince your audiences to act – rather than messages that simply communicate what you want to say.   As Christina Lizaso reminds us, “awareness is not the end goal – it should be taking you to education and to action.”

Think about what you want your listener or reader to do when you are finished telling your story? What will motivate them to act?  Outline clearly the next steps they need to take.  “Awareness should immediately be followed by an opportunity for action,” says breast cancer researcher and advocate, Jamie Holloway (@jamienholloway). While a “dramatic personal story is a more compelling ‘hook’ than just rhyming off a list of facts (no matter how alarming the facts are!),” says Carolyn Thomas (@HeartSisters), author of A Woman’s Guide To Living With Heart Disease,  “a story by itself isn’t the message.”

Insider Tip

Alison Cameron (@allyc375) feels strongly that sharing a personal story should be a starting point for action, not the end goal.  “For me, the personal story has its place yes, but is a starting not an end point, “she says. “The crucial thing is not to fall into ‘inspirational patient’ mode but to work with those listening to come up with concrete actions for change. I got very weary of being parachuted in to ‘tell my story’ then kicked out swiftly after being patted on the head and told how “inspirational” I am. What changed as a result of all that? Not a great deal.”

5. Communicate Your Message

Now that you have identified your target audience and crafted your message you need to think about how to communicate it. The most straight forward way of communicating is directly such as a face—to-face meeting, an email, or a phone call.  Plan ahead for how you will share your story.  What supporting material will make your story stronger? Can you share research data to support your key message(s)?  You don’t need to use too many facts, and detailed data – pick the data that is most relevant to your audience to help make your point; for instance, state data would be important to a state legislator, while patient outcome data would be relevant to healthcare professionals.  The WHO recommends you use facts and figures wisely – if you use too many it can overload and confuse your audience. Balance statistics with stories that convey the human cost of disease.

You should also use blogs and social media to spread your message to a wider audience. Bear in mind the content that works best on the platforms you have chosen. The continuing growth of visual platforms, such as Pinterest, Snapchat and Instagram means that creating visual content is more important than ever. There is a reason the most widely shared content nowadays is highly visual because visuals can rapidly create an emotional response and convey an idea very quickly. The type of visual assets you can create include images, videos, and infographics.

Insider Tip

Jo Taylor created her own infographic to raise awareness of the signs of secondary breast cancer. There are many tools out there which can help you create appealing images without any design skill. I’ve put together a list of free tools here which you may find useful.

6. Promote Your Message

People are more likely to believe and understand a message heard from more than one source. Promote your key message(s) through social media and encourage people to spread it through their social networks too. Research shows that 69% of people share information because it allows them to feel more involved in the world, and 84% share because it is a way to support causes or issues they care about. By making it easy for visitors to your website or blog to share your content, you increase the likelihood that they will take this action. Make sure your social sharing buttons are clearly visible on your site. This is the most obvious (though sometimes overlooked) way to encourage readers to share your content. By placing the buttons on the side or at the end of the article, people will be more inclined to share the article.

Insider Tip

Use a tool like Click to Tweet in your posts. This useful tool generates one-click tweet boxes or links that can be shared through your website, your blog, or via email, to increase social shares.

Wrapping Up

Raising awareness is the first step on the path to change. Change won’t happen right away and it will require patience and persistence. Siobhan Freeney (@breastdense) founder of Being Dense, an organization which raises awareness of breast density and its associated links to breast cancer and screening, believes “awareness is the precursor to change,” and you need “resilience, research, passion and patience” to succeed.  If success feels slow in coming, don’t lose heart.  As triple negative breast cancer blogger, Catherine Foy (@mytripleneglife) points out, “without you realizing it, your story may have given hope to someone struggling.” Even if your story hasn’t changed the world, it may, to quote Kay Curtin, “change somebody’s world.”

What Does It Mean To Be An Empowered Patient?

The term “patient empowerment” is among the top buzzwords in health care circles, but as with many buzzwords, they can mean different things to different people.  The term is most often used to emphasize the value of having patients assert greater control over their health and health care.  WHO defines empowerment as “a process through which people gain greater control over decisions and actions affecting their health” (WHO 1998).  This shift is due in large part to the use of technology that facilitates increased patient access to information via the Internet, peer-to-peer sharing, consumer health devices, and mobile apps.

In a recent Twitter chat, I set out to explore what it means to be an empowered patient today.  The global participation of those who shared their views on the topic shows that patient empowerment is something of universal interest.

Seven Essential Components of Patient Empowerment

1. Information

Information is fundamental to the process of patient empowerment.  Rare disease advocate and parent, Anne Lawlor (@22Q11_Ireland) believes that “an informed educated parent is an empowered one.”  Patients make the best decisions when armed with the right information.  To make genuinely informed decisions about our treatment we must have access to the relevant information needed to make those decisions. “Being informed is key to empowerment for me,” says specialist palliative care social worker, Deirdre McKenna (@KennaDeirdre). “Accurate information, clearly communicated and an available space to discuss and explore options and choices.”

Research shows that access to the right information, at the right time, delivered in the right way, leads to an increase in a patient’s desire and ability to take a more active role in decision-making.  Open and transparent communication and access to a patient’s own medical records is a key driver of patient empowerment. Medical Director and Consultant Surgeon, Dermot O’Riordan (@dermotor) believes to truly empower patients “we should be aiming for the “Open Notes” principles of default sharing of all documents.”    As patient advocate and CEO of Medistori Personal Health Record, Olive O’Connor (@MediStori) points out, “the patient is at the very core of every single service they use – they know everything there is to know about themselves, in the home and outside of it. Yet patient records are not kept with them!”

The OpenNotes initiative began in 2010 as a year-long demonstration project, with 105 primary care physicians at three diverse U.S. health care centers inviting 20,000 patients to read visit notes online through patient portals. Findings from the study suggest that shared notes may improve communication, safety, and patient-doctor relationships, and may help patients become more actively involved with their health and health care.  Evidence also shows a sixty percent improvement in the patient’s ability to adhere to medications, a major problem with managing chronic pain conditions. What is key to the discussion on patient empowerment is that this initiative “demonstrates how a simple intervention can have an enormous impact, even absent advanced technology” (my emphasis).

2. Health Literacy

While access to information is a key driver of patient information, health literacy is  defined as “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.” (National Library of Medicine).  Health literacy should come before digital literacy. “Health literacy is crucial,” says healthcare analyst, Matthew Loxton (@mloxton), “and you cannot get empowerment without health literacy.” Soo Hun (@soo_cchsc), Programme Manager at the Centre for Connected Health and Social Care, believes “digital is a key aspect but health literacy, even basic literacy is a must. Not all things digital requires tech know-how but all health information requires basic literacy. An app for meds reminder is no use if a patient lacks understanding of why medication is needed in the first place or why they need to be taken promptly.  We spend too little time transferring knowledge to patients.”

This transfer of knowledge is crucial to the empowerment process, according to Olive O’Connor. “At the first point of contact with the patient,” she says, “education on how, what, why, where and when in relation to a condition or medication should be talked through fully. All other tools (digital, leaflets etc.) should come after the conversation which is key to empowerment.”

3. Digital Literacy

Cornell University defines digital literacy as “the ability to find, evaluate, utilize, share, and create content using information technologies and the Internet.”  It’s interesting to note that opinions vary on whether digital literacy is essential to patient empowerment. RN turned patient advocate and health activist, Kayoko Ky Corbet (@kkcorbet) doesn’t believe that “digital literacy is an absolute requirement, but the ability to find accurate relevant information, and understand the information is.” Breast cancer advocate, Jennifer (@vitalfrequencis) agrees that “digital literacy is not fundamental and should not be part of the equation. Empowerment needs to be across all socioeconomic groups. Otherwise…a whole bunch of patients may never be empowered.”

Dermot O’Riordan is convinced that “whilst it sounds nice to say that digital is not ‘necessary’ for patient empowerment, in practice it is going to be pretty tough to do it properly/completely without digital.” Transplant recipient and rare disease patient, Carol McCullough (@Imonlyslightly ) also believes “digital literacy strengthens the empowerment process.” She too points to “access to your medical information online” as a key component of the empowerment process. “Knowing your personal medical data is strength, as is education about your illness,” she says.

Maternity campaigner, SeánaTalbot (@SeanaTalbot) believes that “those with long-term conditions and access to technology have a better chance of accessing information and support.”  Indeed many patients have found in the online world of peer-to-peer healthcare an environment in which they are supported to become a more empowered participant in their healthcare. As I look back on my own empowerment journey, my progress was advanced step-by-step by learning more about my disease initially from doctors, then through Internet searches, and most helpful of  all  through patient peers online. Finding and being part of a patient community can be an important step on the path to empowerment.

4. Self-Efficacy

Self-efficacy, as it relates to healthcare, is belief in your ability to effect change in outcomes so that you can achieve your personal health goals. The patient empowerment definition which comes to us from the European Patient Forum describes empowerment as a process that “helps people gain control over their own lives and increases their capacity to act on issues that they themselves define as important.”

Developing a sense of personal control over your health is in itself empowering. The empowered patient is confident in their ability to manage their condition. When unsure about where to go or what to do next they will feel confident to ask questions of the healthcare professionals providing their care.  This confidence comes easier to some than others, and even the most confident may need guidance from their doctors in managing their disease. Endocrinologist, Iris Thiele Isip Tan, MD (@endocrine_witch) points out that “some of my patients are surprised when I teach them how to adjust/titrate insulin doses. Apparently not all MDs ‘allow’ this. Some need handholding because they get anxious about the responsibility.”

Digital leader and physiotherapist, Linda Vernon (@VernonLinda), believes “for authentic patient engagement to occur, we need to establish what the patient brings to the table, something akin to an individual, personal take on Asset-Based Community Development – perhaps we could think of it as Asset-Based Personal Development, supporting the patient to tap into their own internal, community or environmental resources to improve their health and wellbeing.  Engaging patients should be as much about exploring what they can do for themselves and to help the health and care system, as what we professionals can offer to the patient.”

5. Mutual Respect

The healthcare professional is the most important contact point for the patient and the system and (dis)empowerment often manifests in the patient/professional relationship. At the heart of the empowerment approach is seeing the patient-professional relationship as a partnership of equals.  Carol McCullough describes it as a reciprocal process of “mutual respect for what each person knows and being allowed to make informed choices. It is not about command and control.”

This is a partnership approach that seeks to balance clinician expertise with patient preference. It recognizes that while healthcare professionals are the experts in their knowledge of a disease, patients are the experts by experience. The empowerment process is about sharing both knowledge and experience to set new goals and learn with and from each other. Dr Kit Byatt (@Laconic_doc) agrees. “Many patients are experts”, he says, “especially rare disease patients.  I’ve learned from many in my career.”

Building better relationships and seeing the patient as more than ‘just a patient’ was a recurring theme in the Twitter chat. Elena Vaughan (@StigmaStudyIE), who is researching the impact of HIV-related stigma in Ireland, believes that “an empowered patient is treated with respect, involved in shared decision-making regrading care and treatment, and is not patronised. For people with chronic conditions, effective communication, continuity of care and establishing a relationship of trust is very important.” Sometimes, as ME blogger and patient advocate, Sally Burch (@KeelaToo) points out, “not all patients are lacking confidence to speak. The problem is being heard.”

Patient and community advocate, Triona Murphy (@Murpht01) advises doctors to get to know your patients as individuals.  “Know your patient!!…and their family,” she says. “No one size fits all! BUT there was/is still a culture of the ‘person’ stops at the door of the hospital and that person is now a patient.’”  As antibiotic resistance campaigner, Vanessa Carter (@_FaceSA) says, “I might be a patient but I am also a creative director by profession. No one recognises me on that level. They see me as an underdog.”

6. Shared Decision Making

This partnership approach allows for Shared Decision-Making (SDM) – the conversation that happens between a patient and clinician to reach a healthcare choice together. Examples include decisions about surgery, medications, self-management, and screening and diagnostic tests. There is ample research which suggests that health outcomes are better in patients who are more involved in decisions about their treatment.

In the SDM model, the clinician provides current, evidence-based information about treatment options, describing their risks and benefits, and the patient expresses his or her preferences and values. Matthew Loxton points to how seldom we have metrics to track whether patient goals are being met. “Yet this,” he believes, “is THE most important part of quality.”

7. A Facilitating Environment

Linda Vernon defines patient engagement as “activating the person’s inner assets and supporting them to make the best use of them.” Being supported is a key component of patient empowerment. Many patients would like to take more responsibility for their own health and care, given the opportunities and support to do so. Empowerment does not happen in a vacuum: it is a two-way process. The patient needs a counterpart in the health professional who welcomes the patient’s involvement and knows how to create an enabling healthcare environment. Kayoko Ky Corbet states she became an independent patient advocate when she realized most doctors simply do not have the time (and often skills) to take this facilitating role and promote shared decision-making that patients desperately need. As Patient Critical Co-op (@PatientCritical) puts it, “if you have a patient who wants to advocate for themselves, and become informed, you also need a doctor that respects the patient’s right to share decision making.”

Is It Empowerment or Participation?

Not everyone likes to use the term “empowerment”, as it implies that it is an authority given to someone to do something. “I balk at the idea that professionals can ‘give’ (usually on their terms) power to the powerless,” says Alison Cameron (@allyc375). “We need to create conditions whereby people can “empower” themselves.” Seána Talbot agrees that patient empowerment “doesn’t mean ‘giving’ people power.’ Rather it’s about ‘enabling’ them to recognise and use their power.”

Perhaps the term ‘participation’ (which is a more active state) is preferable? This distinction is important because empowerment cannot be imposed ‘top down’ (although it can be facilitated).  Sharon Thompson (@sharontwriter) believes that “patients should not be pressurised or need to be in a position of ‘power.’ It should be automatic that a patient is central and key to their care. Patients are automatically empowered when they are respected as being people who are entitled to understand and know about their care.”

Neither is patient empowerment about the patient taking full control or shifting responsibility to the patient.  “If the empowerment amounts to abandonment”, says Matthew Loxton, “then the patient’s health goals are not being met. Patient empowerment should never be an excuse for abandoning or burdening the patient.”

Rather, the empowerment approach, as defined by the European Patient Foundation (EPF) “aims to realise the vision of patients as ‘co-producers’ of health and as integral actors in the health system.”  Caregiver Reinhart Gauss (@ReinhartG) agrees that “patient advocates want to work with not against doctors – to share experiences and to grow in knowledge.”  Vanessa Carter is clear that “we still want our doctors, but they are not there 24/7 so patients need the right tools to make self-care possible.”

Equally, it is about recognizing that there are degrees of involvement and not all patients wish to be ‘empowered.’  There is a spectrum of interest in wanting to assume an active role in care – from being passively receptive to fully engaged. It is up to the patients themselves to choose their own level of engagement. Pharmacist Chris Maguire (@chris_magz) sees this choice as the essence of empowerment. Patients “get to decide how much they want to look into things and take control. Or they want to be guided on the journey and have trust in their healthcare providers. But the key is that they decide the level of interaction and are not dictated to.”  Kayoko Ky Corbet agrees that “true patient empowerment should be about helping patients get involved at their highest potential or at the level they choose.” However, she says “it’s also important to keep the option of involvement open. Ideally patients should get opportunities to change their minds to participate in decision-making later.”

Empowerment as an Ongoing Process

Empowerment is a non-binary, non-linear process. Your needs may change over time. You might feel empowered in a certain context, but disempowered in another. Healthcare communicator, Michi Endemann (@MichiEndemann) makes the distinction that “talking about empowerment as a healthy person is quite different than talking about it as a patient.”  As patient advocate, Rachel Lynch (@rachelmlynch) puts it, “it can be quite tiring being empowered when all you want to be is well.” A sentiment echoed by Kathy Kastner (@KathyKastner), founder of Best Endings, who clarifies how “to me ‘empowered’ assumes I’m feeling physically and mentally up to the task of ‘being engaged’. I’ve seen powerhouses who cannot bring themselves to take responsibility for their own health.”

Mental health advocate and co-founder of #DepressionHurts, Norah (@TalentCoop) calls attention to the fragile nature of empowerment. “Even the strongest can quickly feel disempowered by a deterioration in health,” she says. “Fear disempowers. Sometimes it’s a case of ‘can’t’ not ‘won’t.’”

For those who feel ready for a greater degree of participation in their healthcare (and that of their family and loved ones), Jennifer advises that “being willing to self-advocate, along with self-confidence, communication skills, compromise, research skills, and relationship building” are some of the key traits and skills you need to become an empowered patient. Terri Coutee (@6state), patient advocate and founder of DiepCjourney Foundation, adds that “empowered patients do their research, ask questions, go to appointments organized, and take a friend to help listen.”

Barriers to Patient Empowerment and Overcoming Challenges

What are some of the current barriers to involving patients more in their care? Jennifer points to a “lack of adequate time during the doctor’s visit (on both sides), language barriers, technology barriers, generation gaps, and cultural gaps.”  The solution?  “All solved by building good relationships,” says Jennifer.

Norah also calls attention to the technology barriers. “For older patients simple things like communication (hearing), or uninformed changes are extremely disempowering; as is over reliance on technology for a generation who may not have ‘tech’ understanding or access.”  Tim Delaney (@FrancosBruvva), Head of Pharmacy at a leading hospital in Ireland highlights the fact that “in acute hospitals we treat huge numbers of elderly people whose engagement with social media and new technology is lower. We need to design technology that meets their usability needs AND use whatever suits them best be it old tech or new.” Soo Hun agrees that “the tech savvy few have quicker and better access to health information and therefore can have choice and autonomy. To reverse that we need to make technology ubiquitous and make health information and choice easily accessible.”

Whilst Vanessa believes it should be “governmental policy to have digital resources in place, for example, disease specific websites / apps supported by health authorities,” Kayoko believes it can start with “tech-savvy advocates (like me) who could help patients learn to use simple digital tools.”

Matthew Loxton sees a core barrier to empowerment to be “the large knowledge/power gradients between patients and health care providers. Without access to their data, trustworthy sources of medical knowledge, and the power to execute their choices in achieving health goals, empowerment is an empty phrase.”  Triona Murphy echoes this systemic challenge by clarifying that “the whole system needs to understand the patient’s right to be equal partners in their care. IF that is what the patient wants.”

Sometimes the fear of being labelled a difficult patient can be a barrier to empowerment. “Some patients feel uncomfortable challenging the judgement or actions of their caregivers for the fear of being labelled as ‘difficult’, of offending staff and/or because of concerns of compromising their healthcare and safety,” says Tim Delaney.

Final Thoughts

Not everyone wants to be empowered in making decisions about their care, and not every doctor wants to take the time. Some doctors use medical terminology which is incomprehensible to patients, while some patients have low health literacy skills or come from cultural backgrounds that lack a tradition of individuals making autonomous decisions.  That said, Carol McCullough points out that while “not everyone may want to be empowered, for the health service to be sustainable, more people are going to have to take on more responsibility.”

Medical Doctor and Chair of Technical Advisory Board, Pavilion Health, Dr Mary Ethna Black (@DrMaryBlack) points to the inevitability of the shift towards patient empowerment. “Empowerment is an inevitable shift that is happening anyway, “she says. “We cannot turn back the tide or turn off the internet.”

Kayoko Ky Corbet agrees that we “must understand that patients making informed decisions is the ultimate way to reduce waste, pain and regrets in healthcare. It’s also morally the right thing to do!”  Patient Critical Co-op also believes in the moral imperative that “empowerment essentially means a group or society recognizing your right. Patient empowerment exists as an action patients can take to improve themselves, but the key to achieving that improvement is having a group, organization, or state enshrine and recognize those rights.” In fact, the Alma Ata Declaration defined civic involvement in healthcare as both a right and a duty: “The people have the right and duty to participate individually and collectively in the planning and implementation of their healthcare.” The Declaration highlights the collective dimension of empowerment and the importance of action towards change. By working together to think internationally and act nationally we can draw on each other’s experiences so that as individuals and as a collective we can work towards better outcomes for all patients.  To quote Terri Coutee, “When we gather our collective empowered voices, we feel a strong responsibility to give voice to others.”


I would like to acknowledge the assistance of Dr Liam Farrell in facilitating the Twitter discussion on which this article is based.

Grief, Loss, and the Cancer Experience

“In a society which is much more inclined to help you hide your pain rather than to grow through it, is necessary to make a very conscious effort to mourn.” -Henri Nouwen

Grief is a natural response to loss. While many people think of grief only as a reaction to bereavement, we can feel grief after any kind of loss. When we step back and look at the cancer experience we see that grief and loss are a fundamental part it.  Some of our losses are tangible, for example losing our hair, and some are more intangible, such as the loss of trust in our bodies.

Coping with the losses associated with cancer is challenging.  Grief brings many emotions with it. Patients as well as caregivers and family members may go through emotions of anger, denial, and sadness.  While there is no right or wrong way to grieve, there are healthy ways to cope with the pain and sadness that, in time, can help you come to terms with your loss, find new meaning, and move on with your life. 

10 Ways to Cope With Cancer Grief

1. Acknowledge Your Feelings

Attempts at avoiding or ignoring difficult feelings hinder the healing process. Nancy Stordahl, who writes about living with breast cancer on her blog, Nancy’s Point, says we need to “grieve for things we’ve lost to cancer. We aren’t the same people in some ways post diagnosis. We have lost parts of ourselves (figuratively and literally). We need to grieve for people, things and pieces of ourselves we have lost. Too many times we aren’t given the time or ‘permission’ to do so.” By facing our losses and feeling the pain we allow grief to take its natural course and can emerge the other side with greater self-awareness and acceptance.

2. Tune Into What You Are Feeling

It is helpful to get into the habit of checking in with your feelings.  Take a moment to stop and be still. Breathe deeply. Now ask yourself what you are truly feeling. Grief? Guilt? Sadness? Anger? Whatever arises, see if you can just be with the feeling and feel it fully without judging your thoughts or emotions. Is there a physical discomfort associated with this feeling? For example, when you’re anxious or afraid, you may notice a tightness in your chest. Can you soften and relax those areas of tension in your body?  You may find the intensity of your feeling lessens as you do this exercise. If the emotion deepens or adds to your distress, discontinue the exercise and try again later.

3. Write Down Your Feelings

If you feel stuck when sitting with your emotions, try journaling about the experience. For some people, it’s easier to write thoughts and feelings down on paper than to say them out loud.   Keeping a journal to write down your thoughts is a way to come to terms with your feelings of grief. Many cancer patients choose to write about their feelings in a blog. Blogging in a community of other patients who understand what you are going through can be very therapeutic (to learn more about starting a blog read this earlier post).

4. Take Care of Your Physical Health

Grief is as much a physical as an emotional process – (we often refer to grieving as ‘grief work’) – so it’s important that we get a good night’s sleep, take some exercise and eat healthy meals to regain our physical strength and heal fully.

5. Pay Attention to Grief Triggers

Anniversaries of your surgery, diagnosis and other cancer-related milestones can reawaken sad memories and feelings. Plan ahead for those times.

6. Go At Your Own Pace

There is no time-table for grief, yet so often we push ourselves to ‘get over’ our grief as quickly as possible.  Adapting to and coping with cancer is a process, which neither you nor any well-meaning friends or family should rush you through.  Grieving is not something that occurs once and then you are ok.  Psychiatrist Elisabeth Kübler-Ross introduced what became known as the ‘five stages of grief’ as a way of looking at grieving process, but quite often these stages don’t follow a sequential order. In reality grief can be much more disordered. Some people start to feel better in weeks or months. For others, the grieving process is measured in years. Whatever your experience, it’s important to be patient with yourself and allow the process to unfold naturally.

7. Learn To Adjust To Your New Normal

Often we want to rush through our grief (or others want us to rush through it) so we can get back to ‘normal’ again.  The thinking behind this is when we ‘get back to normal’ we are healed. But we may find that it is no longer possible to go back to who we once were.

Your ‘new normal’ may include adapting to changes in energy and activity levels, adjusting to changed relationships at work and in your personal relationships, coming to terms with an altered body, and managing pain and treatment side effects. Be compassionate and gentle with yourself as you move through this process. Don’t judge yourself or try to hurry the experience along.

8. Take Stock

Many people see this as a time to create a new way of being in the world. Psychotherapist Karin Sieger sees in this time “opportunities of reflection, contemplation, looking at life and ourselves. And sometimes new realizations and decisions can come from that”. Ask yourself what is most important to you now? How do you want to live each day?  Hidden within grief is a healing potential that eventually can strengthen and enrich life. Rediscovering your dreams and identifying what you really want for your life can transform your loss into something new within yourself.

9. Don’t Go It Alone

Grief can feel very lonely, even when you have loved ones around. Turning to others who have experienced similar losses can help. Look to cancer support groups in your area or search online to connect with those who truly understand what you are going through.  Talking to a psycho-oncologist or counsellor can also help.

10. Recognize There Is No Right Way To Grieve

Grief is a highly individual experience. How you grieve depends on many factors, including your personality and coping style.  Commenting in her last book before her death in 2004, Kübler-Ross said about the five stages of grief: “They were never meant to help tuck messy emotions into neat packages. They are responses to loss that many people have, but there is not a typical response to loss, as there is no typical loss. Our grieving is as individual as our lives.” Don’t let anyone tell you how to feel.  Your grief is your own, and no one else can tell you when it’s time to ‘move on’ or ‘get over it’.

When Grief Doesn’t Go Away

We all cope with grief in our own way and most of us reach resolution and acceptance in time. It’s normal to feel sadness, depression and grief following a loss, but as time passes, these emotions should become less intense.  If you aren’t feeling better over time, or your grief is getting worse, it may be a sign that your grief has developed into a more serious problem, such as complicated grief or major depression.   If your grief is overwhelming or lasting for a prolonged time, seek out a mental health professional with experience in grief counselling. They can help you work through your feelings and overcome obstacles to your grieving.

Grief can be a roller coaster full of ups and downs, highs and lows.  It takes courage and time to work through your feelings of loss. Grief counsellor Taruni Tan has written that “everyone’s healing process is unique and while there may be universally recommended tools and techniques to try, we each have to discover our own individual formula.” The good news is that most of us who grieve recover with time.   We may be radically changed by the experience, but we find a way to continue to face the future.