THE BLOG

Things I've Learned From Chronic Illness

21/03/2016 13:07 GMT | Updated 20/03/2017 09:12 GMT

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When you're recovering from a chronic illness, you're rarely thinking about how it might be a 'meaningful experience', a 'learning curve' or a 'very important time in your life'. You're mainly thinking about how sh*t everything is.

At one time I wasn't sure if I'd ever recover from CFS. I thought I was going to have to tolerate daily exhaustion and live in the suburbs with my parents for the rest of my life. Gradually though (and thankfully), I started to see improvements in my health. Now, I can do some 'normal' things, like go for walks and concentrate on stuff, without having to worry much about how horrendous I am going to feel afterwards. I am still quite weak, and have the metabolism of a ninety year old snail. But things are looking up.

When I think about my experiences with illness (which I do all the time because I haven't got a job yet), I realise that I approached my recovery in the least sensible way possible. That seems to be a recurring theme in my life, so if I've discovered anything it's this: I am not a sensible person. But where there are mistakes, there's also hindsight - the bit where you 'learn' things.

When I moved back in with my parents, I gave myself six months to recover. I'm not really sure why I chose six months, it just seemed acceptable: not too drawn out and tragic, but not too sudden either. I wanted to get better quickly because I convinced myself that all my friends were going to forget about me if I didn't hurry up. And I wanted to feel like I was working towards something - I needed a deadline. I wasn't even thinking about my health, just obsessing about time: two months since I moved home, three years til I'm thirty, one year til I'm better?

I tried lots of things to try and 'fix' myself. Taking millions of supplements, eating mountains of kale with every meal, no sugar no gluten no dairy no carb diets, no exercise, too much exercise, filling in endless charts and graphs. I started to resemble a sort of mad scientist, shuffling around the kitchen every day trying to discover a cure. But unsurprisingly, my body couldn't keep up with the strict regime. Four months in and everything was exactly the same as it had been at the beginning.

And then it dawned on me one day - that giving up my job and social life to get better was an opportunity, not an inconvenience. When I stopped giving myself deadlines to recover, my health started to steadily improve. So I tried to stop worrying about how long I had left until my twenties were over. It sometimes felt like every day, week or month that flew by did so just to make me feel bad - mainly because I was at home all day taking naps and watching Parks and Recreation. But deadlines and making plans just give momentum to healthy people - it makes them do things. If you are ill, you don't need momentum. You probably need to have a lie down.

One of the most awkward parts of having an invisible illness is that a lot of people won't be able to talk to you about it. They'll often just avoid asking how you are completely, worried that you'll start crying and they won't know what to say. But in most cases, talking about illness boils down to this: who has the guts to point out the elephant in the room first? When someone, anyone, mentions it, it's like taking the lid off a pressure cooker, and everyone can relax again. (There is one small caveat though - if you do talk about it to someone, they may try to console you with the phrase, "Don't be sad, it could be worse!", to which, in spite of their good intentions, you must always respond, "Now you mention it, maybe don't be so happy? It could be so much better.")

Everyone really wants you to 'be positive' when you are ill. Don't get me wrong - I'm all for it, when it's necessary. But being realistic helps too. If you're house-bound and unemployed, it's easy to pretend that The Future will be some kind of infinite happy scenario. I spent months building an imaginary utopia inside my head for When I Am Better, belittling any experiences I had while I was recovering as things that didn't really 'count'. But the problem with putting everything on hold for The Future is that it only exists there, in your head - it will never be realised. And while I was inanely fantasising about running the London marathon, I didn't notice that other, more profound things were falling into place in the present.

It just feels like a grave injustice, when you can't do the things that you used to do. Too tired for hobbies, I threw everything into a pile in my bedroom of Things I Can't Use: Japanese text books, tricky feminist theory, climbing shoes. I was so angry when I had to give up the things I loved, because I didn't know who I was without them. I thought my identity had been stolen from me. But giving up these things meant that for the first time in 27 years, I could look at my life from the perspective of someone who had very little. I started to appreciate the small things that remained.

And my own life, I'd always looked at that with a healthy dose of cynicism - just some mundane events, yoked together by a few friends, family, various shop assistants, a GP and a dentist. I saw things as mundane, so they were. That's the problem with being a born a lucky person, every bit of luck feels like it's an entitlement. It's only when you lose some of these things that the luck starts to feel like a gift. Not just any gift, but one that might be stolen, and one that you don't deserve.

I never once thought about my health before my illness. It was just there, like my ability to walk or my eyesight. Now, every time I go for a walk, read a book, or spend an afternoon with friends without needing a rest, I feel excited. I am grateful for all of the things I am starting to have again. But I am also glad I was able to spend time not having them. Because when I compare my life to how it used to be, I've lost about twenty things. But I've gained a lot more.