The Impact of Chronic Illness When Your Hobbies Determine Your Identity


I recently watched a TED talk by a lady called Jennifer Brea, who spoke about her experiences with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). You know that feeling when someone sums up your own experiences so completely that you feel a warm sense of belonging? When those thoughts and feelings that are so complex you can’t even completely make sense of them yourself are perfectly expressed by someone else, and you suddenly realize you are not as alone as you thought you were? That’s how this TED talk made me feel.

She starts the talk by showing what her life used to be like. 28 years old, studying for a PhD, in a loving relationship and enjoying life. I recently attended a conference at which there was a presentation by someone from a CFS treatment center, who said many people with CFS share common personality traits: high-achieving, active, introvert and perfectionist. I have no idea why this would be. I could speculate that being an introvert and a perfectionist is mentally stressful, and being an active go-getter can be physically stressful, and maybe this puts a strain on the immune system. Or maybe when people who push themselves a little too hard get sick, they don’t rest as much as they should, and the body finds it harder to recover.

Nonetheless, it strikes me as ironic that the people who are most likely to develop CFS are those who are least likely to enjoy resting and taking life slowly. Of course, I’m not suggesting for a second that anyone would enjoy chronic fatigue syndrome or any chronic illness, but for those of us who really enjoy being on the go, both physically and mentally, chronic illness is a bit of a slap in the face. And this led me to think about how chronic illness affects our self-identity.

 

During my good years, I was a very active person. I love exercise. I would even say I get a little addicted to exercise. I used to run two or three times a week, go to various classes at the gym, lift weights and do high intensity interval training. I haven’t done any of these things for about three years. Actually, that’s a lie. About six months ago, after a particularly good week, I decided to attempt a body pump class. The weights I lifted were about a quarter of what I used to lift several times a week during my good years. And yet, that one class led to a major crash that took me about a week to recover from. It might sound a bit sad, but I think about body pump all the time. I used to love body pump. It was more than just a gym class. It was a hobby, a social activity, a way to keep fit and feel good about myself. Body pump was a part of my self-identity.

During my good years, I was also a runner. Admittedly, not a very good one. I was never going to make it to the Olympics but damn it, I loved to run. Just before my health really took a turn for the worse, I ran with a wonderful running group in the town where I live. I met some fantastic people. People I still call friends several years since I last ran with them. But still, it’s hard to keep in touch with your “running friends” when you can’t run anymore. Running was a huge part of my life. It was something I did for me, to keep active, to get outside even on the coldest and wettest of days, to stay in touch with nature and to have a good old chat with my running buddies. Running was a part of my self-identity.

During my good years, I used to love walking. There isn’t much in life that makes me happier than being outside. The beach, the forest, the moors, wherever – if it’s outside, I want to be there. I crave the outdoors. I am lucky my health still allows me to get outdoors sometimes. But it’s hard enough even when you are in good health to find the time and energy to go for a walk, so when you have unpredictable health to add to the list of barriers, trips to the countryside are a rare treat for me now. Being outdoors makes me feel alive, it makes me feel happiness and joy right down to my bones. Ever since I was a young child I have been an outdoors-y person. My favorite thing as a kid was to help my Dad out in the garden. Being an outdoors-y person was not just for fun; it was part of my self-identity.

During my good years, I used to love meeting my friends for a drink on a Friday night. OK, this isn’t exactly the healthiest activity in the world. But sometimes, there’s nothing that hits the spot quite like a glass of wine or two with your friends. A chance to forget about all your worries from the week just gone and the week up ahead, and let your hair down with the people whose company you enjoy most. These days, I really can’t tolerate alcohol. I’m not saying I want to drink a bottle of wine every night, but it would be nice to have the option once in a while to meet my friends for a few drinks and know it won’t put me in bed for a week. The freedom to go out for a drink was a right – a choice that was taken away from me. That was part of my self-identity.

During my good years, I used to love doing puzzles. And I don’t mean picture puzzles (although those are fun too!). I mean logic puzzles, crosswords, sudoku, brain-teasers. I may have gotten my love of the outdoors from my Dad, but I definitely got my Mum’s love of numbers. One of the symptoms I find most frustrating now is brain fog. On my sicker days, I struggle to find words. I know what I want to say in my head, but I can’t get the words out. I struggle to engage in anything mentally challenging, and any attempt at a thoughtful conversation has me totally exhausted. I have gotten pretty good at approaching my work flexibly, so that on those bad days I do the more mundane jobs, and I reserve the thinking jobs, the reading, the writing, for the good days. And I’m so fortunate that I have good days. But how I would love to not be restricted mentally, academically and professionally by my health. Being a thinker, an academic, a logic puzzle-loving nerd – they were part of my self-identity.

I think you get the picture. Chronic illness changes your self-identity. It takes away the things that made you, you. And suddenly, through no choice of your own, you are a different person. I don’t think you really lose your self-identity, but rather, you gain a new self-identity. These days, I spend a lot of time doing crochet in my pajamas, and honestly, I get a lot of pleasure from that. But if I had the choice, I would much rather be at the gym or going for a jog. Yoga is also a huge part of my life now, and the wonderful thing is I never take it for granted. Every single time I roll out my yoga mat I am grateful that my body, mind and life circumstances have allowed me to be there that day.

But if chronic illness changes your self-identity, what happens if you get well? Recovery is something I think about and dream about every single day and I can’t even begin to describe what I would give to have my health back. And yet, there is anxiety about recovery. Because if I recover, if I am no longer a sick person – who am I? The things that now make up my self-identity will once again be taken away. I won’t have to sit in my pajamas crocheting a cardigan, but I might choose to. Holy smokes, I will have the choice! That sounds both wonderful and scary at the same time. If I recover, will I return to the puzzle-completing, running, gym-loving, weight-lifting go-getter I once was, or am I now a permanent crocheting, pajama-loving, in-bed-by-9:00 p.m., stone cold sober, sensible person? Have I held on to my self-identity, or have I lost it forever?

This post originally appeared on Chronic Warrior.

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Thinkstock photo via HolySource.


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