Tag Archive for: mental health

How Treatment Side Effects Impact Mental Health and Decision-Making

Cancer is a long, hard road that no one wants to travel down. When it strikes you, though, being strong is no longer an option, but a necessity. You are probably prepared for the physical impacts of this life changing diagnosis, such as chemotherapy, radiation, and surgery.

What you might not expect, though, are the impacts that your treatment can have on your mental health and decision-making.

Depression and Anxiety

If you are going through chemo, you probably braced yourself for the nausea and fatigue that you knew would accompany your treatment. Once you were in the midst of it, however, you may have found that the mental and emotional impacts of chemo treatments are as great as the physical ones, if not greater.

It’s not difficult to understand why. The treatments themselves are inherently stressful, but what you may find even more distressing is how the treatments disrupt your daily life. These disruptions often occur not only on infusion day, but also on the days leading up to and following treatment.

In other words, you might quickly begin to feel as if your entire life is revolving around your chemotherapy, whether you are preparing for your infusion or recovering from it. You may mourn the loss of your daily routine. Your fatigue may interfere with your ability to work, take care of your home, or simply do the things you enjoy. All this can contribute to feelings of anxiety and depression.

The good news, however, is that there are things you can do to manage your emotions and nurture your mental health, even in this challenging time. This begins, above all, with giving yourself permission to feel what you need to feel, to grieve when you need to grieve, or to be angry when you need to be angry.

At the same time, getting stuck in these dark emotions isn’t good for your physical or mental health. That’s why it’s essential to track how you are feeling and to know when and how to seek help when you need it.

Daily journaling can help you process your emotions, while leaning on your support group can provide the comfort and the perspective you need to move through them.

Expecting the Unexpected

One of the most challenging aspects of the cancer journey from a mental health perspective is how unpredictable it can be. It’s difficult to prepare for a challenge, after all, if you don’t know what’s coming.

For example, vision problems are a common but often unexpected side effect of cancer treatment. Many patients experience dry eyes, eye pain, and blurriness as a result of their treatment. This can further increase emotional distress not only because such visual impacts can compromise your daily functioning but also because vision and mental health, research is increasingly showing, are deeply interconnected. Indeed, the brain’s visual processing centers lie primarily in its deepest structures, many of which are also responsible for emotion and mood.

Treatment and Decision-Making

When you are in the fight of your life, and you are truly feeling all the physical and emotional impacts of that fight, it’s not only your mental health that may be undermined; you may find it difficult to make rational decisions. When you are worried, fatigued, and sick, your brain simply cannot process information as efficiently or well.

You might find yourself, for instance, making rash and unwise decisions, or you may find yourself unable to make any decision at all. This is why it is important to surround yourself both with friends and family and with healthcare providers you trust.

Such a support network can help guide you through choices that you may be unable to make on your own when the treatment side effects have sapped your energy, stolen your focus, and deflated your mood.

Indeed, because your support network is so important when you’re undergoing treatment, you may find yourself needing to make some major decisions even before your treatment journey begins. For example, if you live in an isolated, rural area, you may determine that it is best for your physical and mental health to relocate, at least temporarily, to the city.

Living in the city can ensure that you have consistent and easy access to your entire healthcare team, including mental healthcare providers. Not only can this make treatment easier when you’re feeling especially tired or unwell, but such proximity to your trusted team can enable you to feel more confident and comfortable with your care, mitigating some of the stress you feel and enhancing your ability to make sound decisions.

The Takeaway

The cancer journey is a scary one, but it does not have to lead to despair. The key is learning how the journey, including your treatment, can impact your mental health and your decision-making. Armed with such knowledge, you can take the steps you need to nurture your mental and emotional well-being even as you fight to recover your physical health.

How Can Healthcare Systems Better Approach Whole Person Care?

How Can Healthcare Systems Better Approach Whole Person Care? from Patient Empowerment Network on Vimeo.

Healthcare systems can take steps toward better whole person care. Dr. Nicole Rochester and Aswita Tan-McGrory share solutions that can help overcome trauma and lack of trust to work toward healing.

See More From Rx for Community Wellness

Related Resources:

Why Is It Important to Address Whole Person Care?

Why Is It Important to Address Whole Person Care?


Dr. Nicole Rochester:

So we’ve talked about all the things that need to happen in an ideal world, but as you described earlier, the system in which healthcare is provided in our country is dysfunctional, it’s broken, and so as someone with your background, what are some of the solutions? What are some of the things that healthcare systems and organizations can do with all these limitations that we’ve all been talking about today?

Aswita Tan-McGrory, MBA, MSPH:

This actually came from my colleague who’s a psychiatrist, and we did a webinar together, and she mentioned this, and I just really loved it as a solution which is talking as a pathway to healing, when we think about…a lot of what I heard today, the big thing is a lack of trust between a patient and a provider or a patient and a healthcare system, there was so much trauma in our communities that we don’t talk about, and so I would say that like…

One solution is, we as a system need to talk about these challenges more openly or more…I mean I have this sign behind me it says, “Get comfortable being uncomfortable to talk about racism.” But I think also within our own communities, we need to talk more about the challenges, the things that we just sort of tolerated that are not okay anymore, and getting mental health care, acknowledging that we are disproportionately attacked when we go out on the streets, all of those things, we need to more openly talk about, and that is a pathway to healing, which I think this country really could use. And so my solution is simple but difficult, but probably cheaper than any other solution that I would offer to fix the issues. I think we just need to start there, yes, we can do many things, but I think talking about this as a pathway to healing would go a long way.

Dr. Nicole Rochester:

Wow. Talking as a pathway to healing. That is powerful.

Why Is It Important to Address Whole Person Care?

Why Is It Important to Address Whole Person Care? from Patient Empowerment Network on Vimeo.

What is whole person care, and why is it important to address? Dr. Nicole Rochester, Dr. Broderick Rodell, Aswita Tan-McGrory, and Sasha Tanori discuss the factors that whole person care examines, obstacles of healthcare systems, and how to advocate for optimal care.

See More From Rx for Community Wellness

Related Resources:

How Can Cultural Competency Play a Role in Your Care?

How Does Stress Correlate to Our Physical Ailments?

How Does Stress Correlate to Our Physical Ailments?


Dr. Nicole Rochester:

So let’s start with a definition of whole person care. Whole person care is defined as the patient center, optimal use of diverse healthcare resources to deliver the physical, behavioral, emotional, and social services required to improve the coordination of care for patients, their well-being, and their health outcomes. So I’d like to start with you, Aswita, and I’d like to know your thoughts on whole person care, and why do you think that this has been such a taboo subject for so long, and also why is it important for us to address whole person care?

Aswita Tan-McGrory, MBA, MSPH:

I think that part of the problem is that our healthcare system is very, very fragmented, so if we think about…we have primary care, then we have specialty care, then we have care in the hospital, and oftentimes there’s no communication, or communication is sort of inconsistent between those pieces. And so we as a healthcare system don’t promote this idea of whole person care, where you would really look at a patient, see them, see them in their environment, oftentimes, we’re seeing patients in our own institutions and we really don’t know anything about what we’re sending them home to, right? Unless we ask or we screen.

So I actually think it starts with how we build our systems in many ways, as a very sort of system that doesn’t really work to encourage thinking about the patient in the whole way, and that means the primary care physician being part of the care team with specialty care, getting that conversation just from an implementation perspective, I think this is a real challenge in our system, there’s other things as well, but I think that’s a big piece towards how do we ensure that for the patient…and I’m sure all of us have had our own experiences in healthcare where we are like, “They’re not talking to each other. Well, why does this doctor not talk to my primary care doctor? Aren’t they like logging into the same system?” And then if you go outside of your system, it’s even more challenging, so.

Dr. Nicole Rochester:

I completely agree, and I can relate to every single thing you said as both a physician and as a former caregiver, I will say as a pediatrician, I felt that this idea of whole person care, even before it was really a thing that’s kind of incorporated in our practice out of necessity, and we know that it’s important for the health of children to be involved in what happens to them at school and what happens to them in their child care setting, what’s happening in their homes.

And so that was kind of my reference point, but when I became a caregiver for my dad and kind of stepped into the world of adult medicine, I experienced exactly what you describe, Aswita. Just this fragmentation providers not talking to one another, and just a lack of appreciation for the importance of our environment and the things that we’re exposed to in our homes than in our communities, and how that is so intricately connected to our health. So I really appreciate that.

Aswita Tan-McGrory, MBA, MSPH:

Yeah, I want to just tag on something you just said is, I work with a lot of pediatricians and pediatric hospitals, and they are the angels in our system, if I can say so, you…and they definitely have cornered that market of really thinking of social determinants of health or the whole system for their pediatric patients in a way that I think adult medicine is just catching up on. So I’m totally in agreement, like what you said, and I think it’s because you’re working with kids, you can’t not talk to the parents, not think about what is the school like you know so you’re forced to because of that environment, but that’s really a model that we should be using for all of our patients.

Dr. Nicole Rochester:

I completely agree, completely agree. Sasha, what are your thoughts about whole person care and where are your providers gotten it, right, maybe where have they gotten it wrong?

Sasha Tanori:

For me personally, I can’t speak on every Mexican American, but at least for me personally, it’s definitely been a struggle because where I come from, it’s a very like low demographic, we don’t have a whole lot of resources and stuff like that. So getting care is…it’s not the easiest. I’ve had to go to several doctors before I even got diagnosed, and I didn’t even get diagnosed in my hometown, I had to be sent to San Diego because they had no idea what was going on. They were like, “We don’t know what’s wrong with you. Go home.” They kept giving me misdiagnosis after misdiagnosis, and especially with being a plus-sized Mexican American, they were just like, “Oh, if you lose a couple of pounds, you’ll be fine.” And I show up at the hospital with bruises on my body and they’re like, “It’s because you’re overweight.” And I’m like, “That doesn’t really make a whole lot of sense.” So yeah, it was definitely difficult trying to find a good healthcare professional who would listen to me, and I had to leave out of my Imperial Valley, out of my demographic to go find the help because…

And even then, they were kind of like, “Well, it could be this blood disease, it could be this, it could be that.”  And they were like, “Oh well, is anyone in your family…you’re Mexican, is there anyone in your family who has this type of illness, do they have diabetes, or this or that?” And I was like, “No, just help me. Don’t worry about them. Don’t worry about my family. Don’t worry about them. Worry about me.” And finally, I think after two months or something of just going to doctors’ appointments, after doctors’ appointments, they finally were able to give me proper diagnosis. But it shouldn’t have to take that many trips to the hospital and seeing this many doctors for them to figure out what was wrong. And a lot of it is because of, like you said, it’s because of the whole inequity of being a person of color, and I’m only half-Mexican. But a lot of people see that part of me first, and I think they automatically start being prejudiced, or they start judging you based on the way you look, the way you talk and stuff like that, so that way. It’s definitely been a struggle, especially being here in the Imperial Valley, we’re so close to the Mexican border. So they just automatically…they’re like, “No,” it’s just straight up, “No.”

Dr. Nicole Rochester:

Wow, I’m really sorry about that, and I appreciate you sharing your story. What about you, Broderick? And you’re a naturopathic physician, you’re a wellness expert, so you probably fully…not probably you fully understand the importance of whole person care. I feel like that’s at the root of your specialty, so maybe you can give us some ideas about how you approach this and why whole person care is so important.

Broderick Rodell:

Yes, thank you. And I do fully understand the various issues and concerns that can arise when you go to a medical doctor and the specialist and not talking to your primary care physician. And so I focus a lot of my attention on the individual and what you can do as an individual to care for yourself, to educate yourself about well-being and help. It doesn’t deny the various social conditions or structural issues there. It’s just that I feel like we have our greatest amount of power, a great capacity to act and taking as much responsibility as we possibly can in our own care through educating ourselves about how our bodies work, how our mind works, how disease manifestation arises, taking advantage of the tools that we have available to us via the Internet and educating ourselves so that we can be advocates for ourselves when we have a conversation with the various medical practitioners. But I’ve also really emphasized what can I do to maximize my health, my well-being, what choices can I make in my life to make my life into a life with maximum wellness and well-being and minimal suffering? And I do spend a large amount of time focusing on training the mind, reducing stress, educating yourself around, what can I do to eat well, nutrition, what can I do to exercise? To get my body moving, what are the various things that I can do to care for myself to the best of my abilities and not give too much power over to medical doctors on a medical system that not always…

Now, I want to say, I’m going to be careful, I say this can be quite incompetent and that incompetence is associated with, I think what was mentioned earlier, a lack of communication. A lack of communication, the way the system is set up, it’s kind of dysfunctional and the various incentives and not enough time spent with patients. And if you’re not spending enough time with patients and you’re not communicating with other practitioners that are working with these patients, then you’re not going to have a very good idea of what’s going on in this patient’s life and what could be contributing to their illness. So, therefore, it’s incumbent upon the patient, we as individuals, to try to learn as much as we can and try to get our communities involved to help create educational programs to facilitate that education and that awareness.

Dr. Nicole Rochester:

I completely agree, Broderick, the ideas that you mentioned in terms of we as patients and family members and communities educating ourselves about our own health and advocating for ourselves as someone who left medicine to become a professional health advocate, I’m all about advocating for yourself, speaking up, understanding what’s going on with your body. And I know that that can be challenging. And some people feel like, “It’s unfair, if I’m sick, the last thing I should have to worry about is fiercely advocating for myself in a medical setting.” And it is unfair to some degree, but as you stated in this system and the system that we’re currently operating in it is absolutely necessary, and I love that you mentioned mind, body spirit. And as a traditionally trained physician, I will admit that we don’t get that connection, that’s not something that is part of our traditional training. And it’s unfortunate that we kind of just see the body over here, and then the mind over here. And we know that we are all…this is all part of who we are, and that if your environment is not optimal, if your mental health is not optimal, if your spiritual health is not optimal, then that’s going to manifest itself in your physical health.

Acute Myeloid Leukemia, Recommended Coping Methods and Mental Health

Acute Myeloid Leukemia, Recommended Coping Methods and Mental Health from Patient Empowerment Network on Vimeo.

How can acute myeloid leukemia (AML) patients and care partners find coping methods? Watch as expert Dr. Catherine Lai shares advice and resources to help with mental health and ways to cope with AML over the long term.

See More from Best AML Care No Matter Where You Live

Related Resources:

What Role Does Telemedicine Play in Acute Myeloid Leukemia Care?

What Role Does Telemedicine Play in Acute Myeloid Leukemia Care? 

Does Acute Myeloid Leukemia Prognosis Vary by Age?

Does Acute Myeloid Leukemia Prognosis Vary by Age? 

Advice for Acute Myeloid Leukemia Patients Seeking a Clinical Trial

Advice for Acute Myeloid Leukemia Patients Seeking a Clinical Trial 


Sasha Tanori:

Right. So a silent side effect that people facing cancer don’t always talk about is mental health. Are there any treatments or coping methods that you recommend for patients and care partners?

Dr. Catherine Lai:

Yeah, so I would say to get social work involved early on, I think there’s also…it’s silent, because there’s a lot of stigma around it, is that is something that we should be talking about or not talking about or…I can handle it, that sort of thing, so I introduce our social worker very early to know that she is a resource for the patients, no matter how big or how small, just to try to get them used to that idea. What I would also say is just talking with as many people as possible as I’m sure you realize that the network and the community is small, and everybody is willing to help each other out. So once you put yourself out there, you’ll realize that there are other resources out there, and you’re not alone in this journey, and what your cancer team offers you is different than what other patients who have gone through exactly what you’ve gone through can offer, and so I know that there are other resources out there in terms of societies that connect other patients who have the same diagnosis. So I would say it’s really just about education and talking and knowing that it’s okay to talk about your diagnosis and no matter what format that is, or if it’s a little bit now and a little bit later, and also just normalizing it, in the sense of the feelings you have are valid and normal. And if you don’t have those feelings is actually when I get worried about patients because you’re supposed to have certain reactions, you were a young patient and you were diagnosed with cancer.

That’s not a trivial thing. And we’re just…we’re all here to help you and help the patients go through everything.

MPN Patient Shares Survivorship Tips, Recognizing Social Media Toxicity

MPN Patient Shares Survivorship Tips, Recognizing Social Media Toxicity from Patient Empowerment Network on Vimeo.

 Myeloproliferative neoplasm (MPN) patient Julia Olff has experienced the positive and negative aspects of online information and social media in her search for support. Watch as she shares her support journey with what she found helpful and what became toxic in her efforts to gain MPN information and emotional support.

See More From the MPN TelemEDucation Resource Center

Related Resource:


Julia Olff:

So, I think social media has many advantages, especially when you have a rarer illness like myelofibrosis. I was diagnosed with myelofibrosis in 2008, and there really was not a lot of good information yet about the illness online, and I had not met anyone who had my myelofibrosis, so I really appreciated being able to go to places like Facebook in their earlier days, with my illness, to find organizations to find other people with the illness, I think learning from other people in terms of their strategies for coping with her illness, tips for dealing with side effects, and other people can answer questions about the physicians and nurses just can’t because they don’t experience it directly, how something feels sort of setting your expectations for a treatment can be really helpful, and I think that’s where social media really shines, is creating community and connecting it to others and learning from peers. The downsides though, I think, are the amount of opinion, unfounded opinion, not sourced opinion that exists that I saw on social media, and then the angry vitriol or kind of disagreement that I found really harmful to my mental health.

I’m always trying to balance how I feel with my mindset, and there are times that that’s easier to do, and times that that’s harder to do, so when I’ve been particularly unwell or just had a hospitalization, I feel like I have…I’m more vulnerable, I have less of a threshold for negativity and angry commentary, and that you can find that on social media, unfortunately, and then, of course, there’s… what I find troubling or not helpful are the opinions of other people who relay people who don’t necessarily have the depth of credible information about a treatment study, what’s right or wrong as it relates to the latest in myelofibrosis treatment, and treatment advances. So it’s helpful to hear about what it was like to have a stem cell transplant from someone with myelofibrosis, but yet I can’t rely on an individual for credible scientific medically sound information. So I think for me, I actually deleted my Facebook account in 2020, but I did keep my Twitter account because there I follow physicians’ epidemiologists, and of course, MPN organizations so that I can know about upcoming webinars or patient events, or new treatments. So that’s been really helpful.  

Balancing MPN Treatment Adherence and Mental Health

Balancing MPN Treatment Adherence and Mental Health from Patient Empowerment Network on Vimeo.

Balancing myeloproliferative neoplasm (MPN) treatment adherence along with symptoms can sometimes be a challenge. Watch was myelofibrosis patient Julia Olff explains how symptoms and executive functioning can impact continuation of MPN treatment routines.

See More From the MPN TelemEDucation Resource Center

Related Resource:


Julia Olff:

I think doctors and nurses underestimate how well patients can adhere to treatment and how that relates to one’s mental health. There are times where I have not felt as well and had a kind of foggy brain and had episodes of forgetting to take my twice-a-day treatment, so that’s sort of one type of treatment adherence that I think is just affected by your overall mental well-being, and then there’s the bigger part of it that is about seeing the full picture and all of the things that you have to do to continue with treatment so if it’s pills, for example, here, there’s a lot that one needs to do that I think we take for granted or assume everyone can do that, from remembering to refill your medications to going to actually physically go get them if you have to do that. Some are mail order, in the case of myelofibrosis. Knowing when to take them, figuring out when it may be better based on when they’re prescribed to take…when it may be better for you like with food. I know when I was taking ruxolitinib (Jakafi) that I would take it just as I was going to bed, but I would feel unwell for a while I was laying in bed, and I think it relates to your mental well-being because, over time, treatment also can affect…

Treatment has side…can have side effects, and those side effects can also influence how you’re feeling emotionally, how good you’re feeling as a person, they can affect your energy levels, so the illness can affect…fatigue is one of the number one when problems that people with myelofibrosis face, and then you add treatment to it, and there’s an impact on how well you feel overall, so I think treatment adherence is very much tied to your mental well-being, your outlook, and your ability also to…it’s called executive functioning, how well you can kind of organize your day and your life and they’re all intertwined, I believe.  

Empowered #patientchat – Being Intentional with Your Mental Health

You’re Invited! We hope you’ll join us for our next Empowered #patientchat discussion titled “Being Intentional with Your Mental Health”

We hope to see you Friday, May 28th on Twitter (or tchat.io/rooms/patientchat) at 10:00 am Pacific / 1:00 pm Eastern. Be sure to include the hashtag #patientchat in all your responses!

Guiding our discussion will be the following Topic (T#:) Questions:

T1: What is the purpose of being intentional with your mental, emotional and physical health? #patientchat  

T2: What have you done this year or month to support your emotional well-being? #patientchat 

T3: What is the most loving and supportive thing you can do for yourself right now? #patientchat 

T4: What does resiliency regarding your mental and emotional health look like to you? #patientchat  

T5: What do you engage in daily to bring yourself joy? #patientchat  

Empowered Patient Chats (#patientchat) are held every other Friday at 10:00 am Pacific / 1:00 pm Eastern and during the chat patients and advocates come to learn from each other and discuss topics of interest to empowered patients.

Click HERE to learn more about the Empowered #patientchat Series plus read tips on how to participate.

I'll be at the Empowered #patientchat on Fri 5/28 1pm ET. Join me! Click To Tweet

How Could You Benefit from Joining a Prostate Cancer Support Group?

How Could You Benefit from Joining a Prostate Cancer Support Group? from Patient Empowerment Network on Vimeo.

What are some of the benefits provided by prostate cancer support groups? Prostate cancer survivor Jim Schraidt shares his perspective on how support groups can help patients with the emotional aspects of the disease as well as serve as a resource for information sharing.

Jim Schraidt is a prostate cancer survivor and Chairman of the Board of Directors for Us TOO International. Learn more about Jim Schraidt here.

See more from The Pro-Active Prostate Cancer Patient Toolkit

Related Resources

How Does Us TOO International Support Prostate Cancer Patients and Their Loved Ones?

How Does Us TOO International Support Prostate Cancer Patients and Their Loved Ones?

Newly Diagnosed with Prostate Cancer? Consider These Key Steps

How Can You Insist on Better Prostate Cancer Care?


Jim Schraidt:              

I think there are two primary ways that support groups are helpful. In the best case, a man will come to a support group as a newly diagnosed patient. And we’re actually working with a pilot project at Northwestern in Chicago where we have a support group that’s been in existence for a little over a year at this point.

But one of things that we’re working with the urology department there on is to get the urologists to refer newly diagnosed patients to the support group. And I think the primary benefits to a newly diagnosed patient are first, sort of removing some of the anxiety by talking to people who have been through the process and reminding them that in 90 percent of the cases they have some time to do some research, talk to people, and make a good decision that they can live with.

Because all of the treatments for prostate cancer, with the possible exception of active surveillance, come with side effects that a person undergoing this kind of treatment is going to have to live with for the rest of this life.

So, it’s a decision that’s very important. And to have the best possible outcome for a patient, they need to know what those side effects are. And they need to hear from men who have actually been through it.

I think the second important function of support groups is just support; after treatment, or if a patient is unfortunate enough to have recurrence or progression of his disease. And we’re not practitioners. We’re not medical practitioners. We don’t give medical advice. But there are lots of tricks of the trade, if you will, that men who have been coping with side effects can share with other men and help them get through it.

And part of that is just having a place to talk about what they’re going through, whether it’s things that they’re embarrassed to talk with their friends about, or things where they’re having difficulty communicating with their partner. I know from experience also that anger is a big thing that many patients experience, anger, and depression, post-treatment. And for me, one of the huge benefits of a support group was finding a place where that anger could go.

Because, I mean, even the best and most well-intentioned spouse, partner, or whatever, is going to grow tired of an angry patient partner.

And that can impact communication and can isolate a patient. So, it’s really important to have a place where some of that can go. And that’s part of the second piece, as far as I’m concerned.

The whole mental health piece really is under-emphasized, under-discussed by practitioners, but is very real for a lot of men undergoing this treatment. And the good news is that, that there is help available, and you can get through this. But many, many, many times you can’t do it on your own.

And you can’t do it solely with the help of your partner many times. So, this is one way you can talk to other people who have been through it, and they may have suggestions about therapy or talking to mental health practitioners.

Practicing Self-Care in the Time of Coronavirus – How to Mind Your Mental Health and Well-Being During Covid-19

As the coronavirus outbreak continues its relentless spread, the impact of the pandemic is being felt across the globe. We are facing a critical time of fear and uncertainty individually and in our communities.

COVID-19 will affect us all to varying degrees –  physically, emotionally, socially and psychologically.  

You may notice an increase in some of the following feelings:

  • feeling stressed and anxious
  • fearing that normal aches and pains might be the virus
  • excessively checking for symptoms, in yourself, or others
  • becoming irritable more easily
  • feeling insecure or unsettled
  • having trouble sleeping
  • feeling helpless or a lack of control
  • having irrational thoughts

Both The Centers For Disease Control and Prevention (CDC)[1] and  The World Health Organisation (WHO)[2] have responded to the psycho-social impact of coronavirus by releasing  guidelines for those whose mental health is being negatively impacted.

In addition to these guidelines, many patient leaders are providing information and support to their communities through their social media channels.  To quote board certified coach, Nancy Seibel (@NancyLSeibel)  “those of us who have had cancer and other serious health challenges know something about how to self-calm and cope with uncertainty.  We know a lot about life being upended; uncertainty; living with but not in fear. It’s a hard-won gift, one that we can share with others.”  

While this is naturally a worrying time, there are many things we can do to mind our mental health and boost our immunity and well-being at this time. Being proactive about how you handle this crisis can help to keep both your mind and body stronger. I hope you will find the following tips helpful and reassuring as you navigate your way through this time of global crisis. 

10 Ways To Take Care Of Your Mental Health And Wellbeing During Covid-19

1. Recognize  What You Can Control

While many of the things that surround this crisis are outside of your control, you can still focus on those things that are within your control. Hand washing,  staying at home,  limiting unnecessary travel and contact with others are steps we can all take to decrease our personal risk and protect others.   If you’re a cancer patient, currently undergoing treatment, you are in a high-risk group because cancer treatment compromises your immune system[3]. Follow the advice for High Risk Patients outlined on the Centers for Disease Control and Prevention (CDC) website.[4] 

That said, the reality of life as a cancer patient has probably prepared you for this moment better than most.  As breast cancer survivor, Diane Mapes, wrote in a recent Fred Hutch [5] article, “For the immunocompromised and those with disease, social distancing and uncertainty are a way of life.”

2. Focus On  The Facts

In a world of 24/7 rolling news and social media updates, it’s easy to get drawn into speculation and hype.   “It’s ok to be scared,” says breast cancer survivor, Karen Murray (@MurrayKaren),  “but don’t let fear take hold.” Rumors, myths and falsehoods can take on a life of their own if we let them, but as patient advocate, Nancy Stordahl[6] reminds us, “calmness is contagious too.”   

Keeping a realistic perspective of the situation based on facts is important at this time. Avoid media outlets that build hype or dwell on things that can’t be controlled. Stick to respected sources of information on the coronavirus and how to handle it. 

If you’re unsure  about something you’ve  read or heard, check it on the International Fact-Checking Network (IFCN) at the Poynter Institute[7].   If you’re concerned about whether you may have COVID-19,  the Cleveland Clinic[8] has a free screening tool to find out your risk level, based on your symptoms and travel. Additionally,  Intermountain’s COVID-19 Symptom Checker[9] is an easy to use, digital tool to help people get important information about COVID-19, assess their risk, and navigate to the most appropriate care setting.  “These are scary times, for sure,” points out Nancy, “but knowledge is power. Learn what you need to in order to keep you and your loved ones safe.” 

3. Limit Your Exposure To The News

The constant stream of social media updates and news reports about coronavirus could cause you to feel extremely stressed. If the constant drip feed of live news and social media is making you  anxious,  limit your exposure to news outlets.  I’m not suggesting you totally  ignore important news  updates – it’s essential to keep yourself informed. But you can reduce your anxiety by reducing the amount of time you expose yourself to the news.  Limit your media consumption to a certain amount of time each day. According to WHO, minimizing the amount of news you watch can be beneficial in helping people keep calm and positive.  The organization also suggests we “find opportunities to amplify positive and hopeful stories and positive images of local people who have experienced Covid-19.”

4. Practice Good Self-Care 

It’s important to pay attention to your self-care needs, especially during times of stress. Eating a healthy, balanced diet, avoiding excessive alcohol and stimulants, getting plenty of sleep, practising relaxation techniques, such as breathing exercises and meditation, and  taking daily exercise are key ways to stay physically and psychologically  healthy during stressful times.  Oncoplastic breast cancer and reconstructive surgeon,  Dr Tasha Gandamihardja (@DrTashaG) also suggests you “do little things that give you joy e.g. watch  a favorite program or read a favorite book.” 

Don’t put too much pressure on yourself at this time, advises metastatic breast cancer patient, Julia Barnickle (@JuliaBarnickle). “On days when I don’t have the energy to do much, I tell myself ‘just do one thing.’ If I feel like doing more, that’s great, but I never feel guilty about only being able to do one thing. So I choose the one thing that feels most important, whatever it is,” she says.

5. Keep Active

Build regular exercise into your day. There’s an abundance of scientific evidence showing how important fitness is for mental health: so during this very stressful time, it’s even more important.  The closure of gyms at this time doesn’t of course mean you can’t keep fit. Going for a walk or hike (if you  aren’t self-quarantined) watching a workout video online, practicing yoga or walking up and down stairs in your home are all ways to keep active and fit.   Cancer researcher, Emily Drake  (@EK_Drake), has seized on this time as an opportunity to learn to run. “I’ve never been a runner,” she explains, “ but with gyms and yoga studios closed – online just doesn’t work for me –  I need to get out.”

6. Eat To Beat Stress

Registered dietitian,  Cathy Leman[10] recommends you mix and match from these 29 foods each day to boost your body’s stress busting powers.

  • Vitamin C fruits and veggies
  • Green and red peppers, potatoes, oranges, grapefruit, strawberries, tomatoes, kiwi, cauliflower, cabbage, onions
  • Vitamin E foods
  • Dry roasted sunflower seeds, almonds, spinach, safflower oil, wheat germ, green leafy vegetables
  • Polyphenolic foods
  • Chocolate, tea, coffee
  • Complex carbohydrate foods
  • Barley, rye, oats, whole wheat
  • Omega 3 foods
  • Walnuts, ground flax seeds, fatty fish, chia seeds, canola oil

7.  Stick To A Daily Routine

Your daily routine may be affected by the coronavirus outbreak in different ways. But according to WHO, people should try to stick to their daily routines as much as possible.  “Ensure that you create a realistic and helpful daily routine and structure to your day, and stick to it, “ recommends psychotherapist, Karin Sieger.[11] “Have regular times for getting up and going to bed as well as meal times.”

For those of us who are working from home maintaining a routine can be challenging.  The temptation to sit in pajamas all day is real. Try to  stick to a working routine as much as possible – this includes structuring  your day with regular breaks (try working in 45-60 minute chunks of focused work followed by a short break),  minimizing distractions,  stopping for lunch, getting some fresh air, avoiding staying in the same position for prolonged periods  of time and keeping hydrated.  

8. Stay Connected

While “social distancing,” is hypothesized to flatten the curve of the contagion,[12] it’s not without costs. Research shows that social support is vital for our mental and physical health. According to WHO, individuals in isolation are one group that may feel the impact on their mental health the most.  To combat the loneliness of self-isolation, the organization advises people  to “stay connected and maintain your social networks”. 

Maintaining strong connections will help you to feel supported, but since face-to-face in-person support is limited we need to find other ways to connect and receive support. Patient advocate,  Terri Coutee (@6state)  recommends  utilizing online platforms. “Call/text family members often and talk about fun times together,” she suggests.  Social media and social messaging apps are  a boon at this time. Patient advocate, Siobhan Feeney (@BreastDense) says she is “so grateful for my social media friends in many countries as we share the burden of this pandemic.”  In addition,  individuals who are self-isolating can also use QuarantineChat,[13] a new app that aims to connect people who are quarantined and may not have close family or friends to call. [14]

9.  Find Creative Distractions

Doing something creative can help improve your mood when you feel anxious or low. Creative activities can also increase your confidence and make you feel happier. This is because creative hobbies often completely absorb your attention, helping you to temporarily forget negative thoughts.  Carolyn Thomas (@heartsisters) shares this lovely idea for creating together with friends: “my paper-crafting friends and I are having our first ever virtual card-making workshop together via the miracle of video chat…. We each have a number of springtime birthdays coming up among our families and friends, so we’ll be creating springtime-theme birthday cards today.”

Looking for some more creative ideas? From baking to blogging, journaling to jigsaws, Sara Liyanage, author of Ticking Off Breast Cancer, has compiled a bumper list of distractions[15] for you to try.  Also check out PEN’s own Activity Guide here.   Experiment until you find something that suits you.

10. Practice Kindness and Self-Compassion

Nancy Seibel recommends shifting your focus to giving and receiving kindness.  “You’ll be worried, anxious or fearful at times. That’s a natural response to what’s happening, “ she says. “Accept those feelings compassionately. See if there’s anything to learn from them. Then shift your attention. Focus on what you’re grateful for. Walk. Ride your bike. Write. Dance.” She recommends starting with your own self-care, before expanding it out to others. “Calm and center yourself with meditation, deep breathing, knitting – whatever soothes you. Then support others. Spread a contagion of joy, love and kindness! That’s what will get us through this turbulent time.”

This Too Shall Pass

One of the things that is helping me right now is to tell myself that this reality is not forever. Patient advocate, Liza Bernstein[16] reminds us that while  “for now, #COVID19 feels like the entire world’s permanent reality… [but] within that, there are moments, nuances, and joy. There is hope, a delicious piece of chocolate, or a beautiful flower, or a hilarious meme, of if you’re lucky, a dog to play with, a loved one to hug (if you’re in the same home and healthy!)… or whatever floats your boat.”

The spread of coronavirus is a new and challenging event. Most people’s lives will change in some way over a period of days, weeks or months. But in time, it will pass. My wish for you today, especially if you are feeling anxious, alone, or fearful, is that you can find something to hold onto in this moment. To quote psychologist and breast cancer and SCAD survivor, Elizabeth McKenzie[17], “In this moment, as I write this, I have all that I need. I have my breath. I have my mind. I have my family. I have friends. I have shelter. I have clean water and good food. I have the nearby woods in which to walk. Not all moments are like this but right now it is.”

Additional Resources

At Home Self-Care Tips for Parents During a Pandemic


[1] CDC. Coronavirus Disease 2019

[2] WHO. Mental Health and Psychosocial Considerations During

COVID-19 Outbreak  In January 2020, The WHO declared the outbreak of a new coronavirus disease to be a Public Health Emergency of International Concern.

[3] Fred Hutch. Coronavirus: what cancer patients need to know

[4] Centers for Disease Control and Prevention. Are You at Higher Risk for Severe Illness?

[5] Fred Hutch. Lessons from cancer patients in the time of coronavirus

[6] Nancy’s Point. What Can Cancer Patients (or anyone) Do to Protect Themselves & Others During the COVID-19 Pandemic?

[7] The #CoronaVirusFacts / #DatosCoronaVirus Alliance unites more than 100 fact-checkers around the world in publishing, sharing and translating facts surrounding the novel coronavirus https://www.poynter.org/coronavirusfactsalliance.

[8] Cleveland Clinic. Find Out Your COVID-19 Risk

[9] Intermountain Healthcare. COVID-19 Symptom Checker.

[10]Dam.Mad. About  Breast Cancer. Eat These 29 Foods to Help You Manage Stress

[11] Karin Sieger. Coping With Difficult Times.

[12] Live Science. Coronavirus: What is ‘flattening the curve,’ and will it work?

[13] https://quarantinechat.com

[14] Quarantine is the separation and restriction of movement of people who have potentially been exposed to a contagious disease to ascertain if they become unwell, so reducing the risk of them infecting others. This differs from isolation, which is the separation of people who have been diagnosed with a contagious disease from people who are not sick; however, the two terms are often used interchangeably, especially in communication with the public. The psychological impact of quarantine and how to reduce it: rapid review of the evidence

[15] Ticking Off Breast Cancer. Ways To Distract Yourself During Self-Isolation.

[16] It’s The Bunk. It’s #Covid19 – Start Where You Are

[17] My Eyes Are Up Here. All I Need

Holiday Hacks: Tips for Coping with Chronic Illness During the Holidays #patientchat Highlights

Last week, we hosted an #patientchat on Holiday Hacks: Tips for Coping with Chronic Illness During the Holidays. The #patientchat community came together for an engaging discussion and shared what was their mind.

Top Tweets

Celebrate What You Can Do

But How Are You Really Doing?

Don’t Assume Anything

Full Chat

Social Determinants of Health (SDOH) w/@askdrfitz and @HealthSparq #patientchat Highlights

Last week, we hosted an #patientchat on the social determinants of health (SDOH) with HealthSparq (@HealthSparq) and Dr. Lisa Fitzpatrick (@askdrfitz). The #patientchat community came together for an engaging discussion and shared what was their mind.

Top Tweets

Social Determinants of Health Are A Systemic Issue

There Are Many Social Determinants of Health

Full Chat

Patient Experience: Let’s Talk Patient Burnout #patientchat Highlights

Last week, we hosted an #patientchat on the patient experience and patient burnout. The #patientchat community came together for an engaging discussion and shared what was their mind.

Top Tweets

Burnout Is Real and Normal

Many Factors Can Lead to Burnout

Full Chat

Tackling Medicine’s ‘Taboo’ Subjects

Many people feel reticent to speak about their personal medical problems and for 3% of Americans, the problem is so extreme that they feel they cannot speak to a doctor at all. While most concerns lead to nothing serious, there will be occasions where an inability to speak up can lead to further problems. Empowering people to feel confident is important, and there are stages to breaking down the barriers to this.

Improving Awareness

One important step to creating a safer environment for speaking freely is through improving awareness over conditions. Simply put, there are almost no conditions that significant numbers of people won’t have experienced and that doctors won’t see as run of the mill. Diseases concerning sensitive parts of the body and, similarly, venereal disease, are a good example of this, with literally millions being diagnosed every year according to the CDC.Despite this, studies have shown that many men and women are reluctant to discuss their symptoms with doctors.Teaching awareness of these sorts of facts, and outlining how nobody is going to judge, is an important base layer.

Getting Information Out There

Part of the reasons some people will refuse to approach a doctor is through fear of diagnosis, or of invasive diagnostic processes. A great way to combat this is through having as much medical information available online as possible. Services like Mayo Clinic and Healthline have done a lot to aid this in recent years, but more work can be done, especially with more obscure conditions.


Most crucial is the process of de-stigmatizing all illness. Regardless of the cause, condition or outcome, illness remains the same and should be treated with sensitivity. The effect of stigma on illness is clearly felt. Anonymous polls of men by the NCHS found that 10% of men had experienced feelings of anxiety or depression, but less than half had sought treatment. This fear of stigma has led to men being 3.5x more at risk of suicide than women. De-stigmatizing is key, both for mental health and for conditions across the board.

Illness should never be something to be ashamed or scared of broaching the subject of. Instead, it should be something that people feel confident and free to talk about with a doctor, with no worry of abuse or shame. Through awareness, dispersing information and tackling stigma, society as a whole can create an environment in which people of all ages are happy to pursue their medical issues.



Open Mic #patientchat Highlights

Last week, we hosted an Open Mic Empowered #patientchat. The #patientchat community came together for an engaging discussion and shared what was their mind.

Top Tweets

“How do you keep focused on yourself and the things you have rather than what you don’t?”

Mental Health’s Stigma

Mental Health Should Be Apart of Care Coordination

Full Chat

10 Tips for Mental Health Spring Cleaning

Every spring, we give our homes a deep cleaning to get it ready for the coming year. Do you do the same to your mind? Decluttering your brain is just as important as organizing your home. Here are 10 tips for mental health spring cleaning.

1. Start Journaling

Journaling might be a hobby that has fallen a bit out of vogue, but that doesn’t mean it’s any less effective. Keep a journal of your thoughts, worries, fears, and upsets. This helps release them from your mind.

2. Drop a Bad Habit

Pick an area in your life that has an impact on your mental health. For many of us, this might be diet or exercise. Make an effort to drop the habit and replace it with a healthier option. Instead of lazy Sundays, for example, maybe switch to lazy Sunday afternoons after a quick jog.

3. Let Go of Past Drama

Drama, and the negative feelings it induces, has a way of sticking with us. Let past drama go, even if it’s tempting to hang onto it. Your mind will be a more positive space and will be better able to handle the coming year thanks to your effort, and you’ll feel less stress and anxiety as a result.

4. Tackle Projects You’ve Been Putting Off

We all have a mental list of projects we really need to tackle. Start your “mental health spring cleaning” by writing down all of the things that you’ve been putting off, like home repairs or going to the skin doctor, and making the necessary appointments to get everything in hand.

5. Build Positive Relationships

We all have people in our lives that we love, but with whom we don’t have the healthiest or most enjoyable relationships. Instead of spending time prioritizing those people, consider dedicating your time to positive friendships instead.

6. Begin Healing Past Trauma

Life doesn’t leave anyone unscathed, and you might have some experiences in your past that have negatively affected you. If you haven’t already, now is the time to start taking steps towards overcoming them. Don’t be afraid to reach out to professionals for advice and guidance.

7. Make Gratitude a Priority

One great way to promote a healthy mind is to take some time to consider everything for which you are grateful. You can do this in a number of ways. If you’d like to make a daily list, for example, then set aside some time to the activity every day. You can also take a few moments every day and mentally check off all of your blessings.

8. Kick Negative Thoughts to the Curb

Chances are good you have enough on your mind without negative thoughts bouncing around. Consciously push those thoughts out and refocus on something positive instead.

9. Pick Up a New Hobby

Consider starting a new hobby to help spend your time constructively. A mind occupied with an interesting activity is a happy one.

10. Change Your Perspective

Accept that you’re not perfect and neither is the world around you. Instead of focusing on issues that make you made, look to the moments of progress and joy instead.

Are you ready to get started on your mental health spring cleaning? Take a look at some of our tips above and get started!

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