Life is like riding on a magical flying unicorn.
Getting a chronic illness is like that unicorn getting a puncture or losing an engine or something.
Okay, that didn’t make a lot of sense.
I originally devised this analogy with a hot air balloon, but then I thought about how fun it would be to draw unicorns with rainbows and stars and stuff, and I had a long and sensible think about how important it was to me to be clear so my audience would understand me which, in hindsight, wasn’t all that long and sensible, and now I’m finding that the unicorn is far too square to be hammered through this round hole, and what I’m trying to say is that this whole analogy is going down.
But that’s kind of the point.
When you get a chronic illness, your life becomes a nonsensical descending unicorn and the only way to keep it in the air is to carve off big heavy chucks of yourself and throw them away.
If you’re not too ill, you might be able to keep your career afloat, but only if you throw out half your social life and all your hobbies. Or perhaps you choose to throw out half your job; you work part-time but you keep on top of your groceries and housework and you get to see your friends just as often as before.
But if you’re very ill, if doctors slap adjectives like “severe” on whatever it is you have, your unicorn might not be able to carry much at all.
I threw out a job. I threw out study. But it kept getting worse. The unicorn got shot—
—so I rarely left the house, but then it caught fire—
—and I gave up all housework.
For two years, I had the adjective “severe” and a very unhappy unicorn.
I still had my partner. He supported us financially, did all the housework, and helped me when I was sick. But we no longer had a normal twentysomethings relationship. Our friends were taking each other out to bars, having cheeky shower sex, taking selfies while skydiving, bathing in smashed avocado, and firebombing napkin factories. (Or something. Being housebound leaves you a bit out of touch, so I had to extrapolate from sitcoms, social media and inter-generational war opinion pieces). We were different. My partner held my hand in waiting rooms and only slipped into my shower to stop me collapsing in the heat.
People told us how surprised they were that he didn’t leave me and how wonderful he was for staying.
(He is, of course, wonderful).
Because I was such a burden.
The guilt was worse than my illness. Which—to clarify for anyone who hasn’t been so physically destroyed that they’ve spent an entire day perfectly still, not able to move to get food, water, visit the bathroom, text anyone for help, or turn on Netflix—is really saying something.
I apologised to my partner non-stop. Every time he did a chore, got back from work, or paid a bill I hadn’t contributed to, I told him how sorry I was.
But it wasn’t enough. It didn’t soothe the guilt.
I started apologising for no reason, just because I suddenly remembered my broken body, just because he comforted me, just because I still existed. I woke him in the stupid hours of the morning to beg forgiveness. If I had been capable of leaving the house, I would have followed him all day, popping up in a flurry of ImsosorryImsosorrys during bathroom breaks and conference calls. And actually I have a phone and am resourceful enough to achieve a similar effect while lying half-dead on the couch at home.
In short, I was overwhelmingly annoying.
He sat down to talk to me about it.
I could see he wanted to reassure me, and I saw the whole conversation play out in my head. He would say all the nice things I’d heard before, that we were getting by without me working, that it was only a little more housework than he would do if he was living alone, that it wasn’t a problem to schedule his day around my doctor’s appointments. And, ace in the hole, none of this awfulness was my fault anyway.
And I knew that I would pull a face and nod and say okay, but not really be convinced.
Because I would know, deep down, that he would only say all this because when you care about someone you don’t want them to feel like they’re weighing you down. (Even if they are). And maybe because, if you really care, you think it’s worth carrying their associated awfulness.
But the conversation didn’t go like that.
He told me that I make him laugh every day. He told me I am fun. Even when I am housebound. Even when I have to lie perfectly still and can only communicate through facial expressions. He told me I make space for him to be himself. He told me he likes to hear what I have to say about things, and that I make him look at the world differently. He told me that he wants to be around me.
Instead of denying I was a burden, he told me I was carrying him too.
It was special and wonderful and surprising. A big heap of surprising. A fully-functional-unicorn-load of surprising.
I hadn’t realised I had all those things on my unicorn. Right up until then, I believed that if my ability to earn money and do other useful labour fell and smashed into a million pieces, there wouldn’t be anything worthwhile left of me.
But now maybe I do.
At least I try to believe it, which doesn’t mean I succeed all the time, but I’m getting better with practice.
And I think that there are a lot of people like me out there who have papered over their self-worth with jobs and projects and busy-ness, telling themselves it’s all integral to who they are.
Nothing is secure. Not your job, not your body, not your abilities.
But you don’t need any of it to be someone.
I am no longer plagued by the adjective “severe”. It took time, but now I can look after myself, prepare food, leave the house and work from home. Commuting is tricky, and I need lots of breaks and sick days, but that’s still a lot of easy reasons to value myself. Sometime I even forget I’m sick, but I always try as hard as I can to remember what I am underneath.
Because I like a challenge. Because while it’s great my partner likes me, it’s my opinion that matters. Because the future isn’t guaranteed.
Because a magical unicorn isn’t going to do it for me.
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