I recently watched a TED talk by a lady called Jennifer Brea, who spoke about her experiences of Chronic Fatigue Syndrome/ME. 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 realise you are not as alone as you thought you were? That’s how this TED talk made me feel. If you are someone with chronic illness, if you know someone with chronic illness, or if you’re just a human being who’s interested in the experiences of others, please take some time to watch it:
TED Talk Jen Brea: What happens when you have a disease doctors can’t diagnose
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 centre, who said that many people with CFS share common personality traits: high-achieving, active, introvert and perfectionist. Apparently there is research to support this, although I’ve not read the studies myself. But it’s interesting, because I think my friends and family would probably say I fit that overall description, and from Jennifer’s talk, it sounds like she would too.
I have no idea why this would be. I might speculate that being an introvert and a perfectionist is mentally stressful, and being an active go-getter can be physically stressful, an 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. I don’t know, these are just ideas, and I can think of many other reasons why this might be true.
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 3 years. Actually that’s a lie. About 6 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 two or three 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 god 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 that my health doesn’t restrict me as much as it does for many people, and I do still 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 things that make it difficult, 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 outdoorsey-person. My favourite thing as a kid was to help my Dad out in the garden. Being an outdoorsey 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. In fact since starting my Lyme disease treatment, I’m not able to drink at all due to drug interactions. I’m not saying I want to be drinking 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 that 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 choice was part of my self-identity.
During my good years, I used to love doing puzzles. I don’t mean picture puzzles like your granny used to do (although those are fun too!). I mean logic puzzles, crosswords, sudoku, brain-teasers. I may have got 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. It doesn’t happen all the time, and I definitely don’t get it as badly as many people with Lyme disease do. In fact, I count my lucky stars that I am still able to engage in my work, and it’s mentally challenging work at that. But I do struggle. 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 an academic 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 pyjamas, 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 that 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. Many are not so lucky.
But if chronic illness changes your self-identity, what happens if you get well? Recovery is something that 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? Many of the things that now make up my self-identity will once again be taken away. I won’t have to sit in my pyjamas 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 running, gym-loving, weight-lifting, puzzle-completing nutcase I once was, or am I now a permanent crocheting, pyjama-loving, in-bed-by-9pm, stone cold sober, sensible person? Have I held on to my self-identity, or have I lost it forever?