Chronic Illness, Identity and Agency

Ten years ago, I was in Grade 10 and I spent a lot of time hiding things from my friends. I guess the insecurities that go along with being 15 compelled me to feel that I needed to conceal a lot in order to be taken seriously or liked. You might wonder what kinds of things I was so concerned about hiding. A drug habit? A sexual orientation? Love children from different mistresses? Alas, the truth was a lot less interesting – I was obsessed with hiding my struggle with chronic illness.

Even as I write these words, I’m rolling my eyes. Has it really been a “struggle”? I’m not entirely sure. There have definitely been upsetting and scary moments. I suppose that I think of my health as a slightly more inconvenient version of what most other people have to deal with. Perhaps there is no one answer to what the sum-total of my experiences can be accurately characterized as. More to the point, why did I work so hard to hide the fact that the genetic lottery wasn’t entirely favourable to me? Was I ashamed of something that I had no control over?

I’d like to say that I was not that silly (even at the ripe age of 15), but it’s complicated. A lot of my insecurity stemmed from a fear that people would not be able to take me seriously if they knew about my condition. The theme of pity was a big part of my motivation. I hated the idea that people might be friendly to me because they felt bad for me or my situation. I felt that, if people knew the truth about my medical history, I would no longer be able to differentiate between genuinely friendly interaction and charitable intention. To this day, that phobia still gets the better of me from time to time. I was never bullied or picked on, but I came to believe that people’s well-intentioned niceness (borne of pity) was more damaging than any kind of outright hostility.

Silly and paranoid? Yes, ten years later, I can see that it was silly to think so strongly like that. Still, I have a lot of questions about the relationship between chronic illness and its effects on the identity of its sufferer. Has having suffered from CF and Hemophilia changed me substantially? I abhor the idea that my conditions define me and I’ve worked very hard to avoid this being the case. I think this abhorrence is probably a remnant of the attitude that I described as a 15-year-old. That’s all well and good, but is this reluctance realistic? Is it just Denial Lite (TM) of everything that I have gone through? Should we embrace the possibility that things we had no control over or agency about in the past affect the choices that we do make, now?

I guess the fairest compromise is to accept that my collective experience with long-term illness could very well have changed me in certain ways. Would I be the same person if everything in my life was the exact same, except for my diagnoses? I think that is the central question. But, can I even meaningfully extricate all of my health experiences and make an accurate comparison? I cannot deny that these experiences are a substantial, daily part of my life. If I can accept that, why am I so afraid of the possibility that these huge factors have affected my personality or disposition in a permanent way?

I’ll stop with the rhetorical questions, now. The truth is, I don’t like the feeling that I am not in control of most things. I do not enjoy the feeling that vast, uncontrollable factors, decided long before I was born, have perpetually changed me. Fate and destiny are fairly gross concepts to me, frankly. But, really, aren’t we all governed, to a degree, by things and events that we never chose to get involved with in the first place? It, logically, shouldn’t be any different when it comes to genetic illness. There is no shame in admitting that things beyond your control have shaped you in important ways.

Further, how these things have shaped you is another question, entirely. I like to think that my history has helped me to understand pain, isolation and compassion in uniquely deep ways. Your mileage may vary, of course, but I’m not sure that I would have the empathy about certain situations were it not for the hand dealt to me by genetics. And, that is the point: despite the fears I have written about in the last four paragraphs, I have just expressed gratefulness for a byproduct of my illness.

If you are reading these lines and struggling with accepting your illness as part of who you are, this is for you – I don’t worry about people liking me out of a sense of charity, anymore.

I haven’t for ten years.


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