F Words in Rare Disease
A dad I know recently posted a photo and shared his excitement on Twitter about a new set up for his bike with a trailer for his son. Its overall purpose being an opportunity to do more stuff together as a family. I wholeheartedly shared in his excitement as I too had been putting money aside to find more opportunities for my own family to get outdoors more. Both of us are parents of children who were born with a rare diagnosis. Our kids have different rare diagnoses, but like all families we are eager to connect with the greater world around us and share it with our kids however we can.
My own kiddo is going to be thirteen this year, and we are at a turning point in the discussion of overall health. We are off-book and off script as there’s nothing that clinically describes this age range for his specific diagnosis. Anecdotally, he seems to be following his own trajectory for some inexplicable reason deviating from other children I know with this diagnosis. I’m at the hospital more professionally than I am as mom of a patient which to some audiences the reaction is, “Yay! Your family gets a break! So everything is fine now, right?”. The reaction from fellow parents of palliative patients is, “I’m so sorry”, because they realize the fight is over. That life is going to do whatever it is its going to do. The hospital is still there if you need them, but your frequent family vacation time at “Club Med” is to be replaced with a new family dynamic and new identity as take a go at life more on your own.
Health care is quickly deviating from textbook, generalized care to something highly individualized. This in theory is a great concept but is extraordinarily multifaceted in its impact on patients affected by rare disease. As someone who manages a support group of over 800 patients and caregivers from my home province, I find a deep desire to ask in some capacity whether we are prepared for the pace of advancement. A long-term goal I have in mind is to create a biopsychosocial assessment of the needs of families. For now, I can say for as much new information as I bring to the proverbial table, it’s so often met with, “How do I fit this into my complex world?”.
I hesitate to use the term ‘finding balance’ at all, because if there’s one thing I think many of us rare patients and families experience is more of a need to manage random health chaos. The status of my own family can shift on a dime and you have to learn to be very much ok with that because you have no other choice than to.
So how does one even begin to manage understanding how to frame your life and all the decisions you have to make? For a little over four years, I’ve been working as a parent researcher and engagement facilitator with a focus on the subject of childhood disability. One concept we often speak on is the World Health Organization’s International Classification of Functioning, Disability Health. A simplified version of a very technical document is called “The F Words in Childhood Disability”. Now these are concepts that I wish to argue merit for as a way to create form to thoughts and efforts that you are probably doing already. At the same time, it can become very validating and empowering to realize that current evidence points to the fact that you are already on the right track. These are ideas upon which a potential framework can be created in your own mind as to goals that can be accomplished, or a way to weigh decisions that need to be made. We are often so focused on the burdens of disease, that we need a compass of sorts to point us back to the idea that life is happening around us and time can often be a precious commodity. They are six words that reflect the story that’s unique to you or your family and nobody else.
There is often a need to perform tasks in ways unique to their own abilities. If independence in some areas can be fostered, we need to be able to honor that.
Family isn’t always about people you are genetically related to. People react to the idea of illness very differently and in some cases, you need to seek community and “family” elsewhere. Regardless, the people in your life that you surround yourself with are people that are important to you. It’s important to listen to them as they know you best.
As a post-cancer “spoonie” myself, I often bristle a bit on this subject. Between my own struggles with energy and the physical impact of caregiving, I’ve found it difficult to find the energy to be healthy. However, your story isn’t my story and in reality it can be intensely difficult to find ways to be healthy. In the area of rare disease, I think health becomes a broader term by definition: overall health takes on many forms be it mental or physical health. We often term health as some sort of fitness guru Instagram aspiration, but sometimes overall improved health comes from even the tiniest of steps and even the little efforts deserve to be celebrated in a huge fashion.
Existing around peers can take on many forms, and in order to do so sometimes we need to be brave and reach out to others for more accessible ways to connect with friends. What can’t be ignored is a human being’s overall need to connect with other people as we learn and grow together.
In a world that can be taken up so much with appointments and treatments, its so important to stop every now and then and have fun, be silly, briefly escape the world and just plain live. Fun can take on so many different things.
So much definition of future is often left to the financial planners of the world in regards to careers, academics and whatnot. Sometimes the future is only planning ahead 15 minutes at a time or a week from now. As hokey as it sounds, with age I’ve begun to see the value and emotional weight the phrase “one day at a time” holds in my life. I’ve been asked more times than I can count as to how I picture my family’s future. My response remains that I really am not gifted with that luxury, ask me what I’m working on for tomorrow.
I have seen these terms be threaded through my life in so many ways. Sometimes you are only focusing on one F word at a time and there’s no judgement in that at all. I like any other mom am someone who struggles with whether or not I’m doing a good job. I think the gauge by which I measure this is probably unique to my own personal story but I know that I am not alone in this feeling. I feel though with the F words, I have a more confident platform to stand on not to be his voice but to be his microphone. There’s so much I can’t control in life but as his mom I want to help him own every second as his life to live. So in celebration of birthday number 13, we’re taking “fun” as our next goal and bought a bike trailer too! I know he’ll love it.
Rachel Martens is a mom of a child with a rare diagnosis. She’s one with many hats in the health world in policy development, research partnership, mentorship and science communication. She’s an aspiring runner, crochet fan and enthusiastic coffee drinker.