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When You're Torn Between 'I Can Do Anything' and 'I'll Never Be Able to Again' With Chronic Illness

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As a teenager, I spent years of my life overwhelmed by anxiety and depression – there were months when I was unable to leave the house. One way I made it through my teen years was imagining what my life would be like once I had better control over my mental health. I didn’t think these scenarios were particularly far-fetched; the most common one was that I would take up running once I got myself in shape.

Unfortunately, my body had other plans. The way-too-fast heart rate and inability to catch my breath after even light exercise weren’t because I wasn’t used to exercising and just needed to improve my fitness levels – it was a chronic illness called postural orthostatic tachycardia syndrome (POTS). And the pain, never-ending tiredness, and legs that randomly gave out weren’t physical symptoms of my depression – it was another chronic illness called Ehlers-Danlos syndrome (EDS).

These chronic illnesses turned out to be rare and incurable, so I slowly came to realize I was never going to be “well” again. To be fair, I never really was. However, I didn’t know I was ill until recently – not physically anyway – so my body letting me down in such a huge way came as a massive blow.

I had just started managing my mental illnesses a bit better, how am I supposed to deal with a body that doesn’t “work” properly either?

In case you didn’t notice, I switched to present tense for that question because I don’t know the answer. I don’t know how I’m going to spend the next however-many decades managing my illnesses. “Managing” does not sound particularly appealing, and some part of me is still clinging onto the dreams that “able-bodied me” had.

I don’t want to fall too far one way and sink into the “I’m never going to be able to do all of these things again” mindset, but I also want to steer clear of the “I can do anything if I just push myself hard enough” mindset, because I can’t. I can no longer do a lot of things. Walking up and down stairs is something I have to worry about each and every time – sometimes I can’t walk up or down them and have to crawl up or scoot down on my butt. It’s not glamorous and I can’t change it, so pushing myself to do everything is not a good idea, because it means that my body will then be overwhelmed and make sure I can’t walk, for example, the next day.

On the other hand, never doing anything to push myself is also a terrible idea as I am still capable of doing things – even if those things sometimes seem small and insignificant compared to my able-bodied peers. Pushing myself is important, because some days I can shower standing up or change my sheets by myself. But some days deciding to do those things will mean missing work the next day as I am in too much pain, too dizzy, and/or feeing too sick to even sit up (seriously, note-to-self: it isn’t pretty and changing your bed sheets alone simply isn’t worth it).

Feeling frustrated with a body that doesn’t function as it should, in a world that caters to able-bodied people, is completely natural. So is grieving the life that you thought you could have. I’m not sure I’m quite at acceptance yet, but I’ve definitely angrily pushed myself too far because I was annoyed that my body wasn’t letting me do something simple, and cried to my boss about my old running dreams.

I hope I’ll reach acceptance soon, and learn to listen to (and respect) what my body is telling me, but I am aware that it’s a process. I’ll always have days where I get upset or frustrated with my body and situation, and that’s OK. I’m mourning a person that used to be a big part of my life, and the hole that’s been left by her is going to feel all-consuming sometimes. But I can adjust to this new life, without “the future, able-bodied me” by my side to guide me. And if that adjustment sometimes includes wistfully watching strangers jogging down the street while I walk sedately, or look out of a window, then that’s OK too.

Originally published: August 22, 2016
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