I came across this picture the other day. It’s very pretty isn’t it. Then I started thinking, (this is often when the trouble starts…)
What does ‘being your illness’ mean? At what point do you ‘become’ your illness? When it influences every second of every day? When you can no longer work or socialise? When all you think about is illness related? Or when you turn into fully fledged walking zombie? I’ve been in those places, well, not the zombie per se, and I still do think about my illness constantly one way or another. It’s not a choice, my body is always hurting somewhere, I take pills every hour on the hour throughout the day. I have to constantly think about which pills are next, and assess what my body is up to at any given time. Online I’m part of support groups and read blogs to get updates and tips.
How can my day not revolve around my illness? How can I not think about it?
Then there’s another angle, does your illness become part of who you are as a person? Before I started treatment I had cognitive impairment similar to a brain injury. I also had severe debilitating fatigue so had no energy to express myself in ways I would normally do. This meant I went from being a fairly intelligent, passionate, energetic and curious individual, to someone who laid in bed struggling to add 8+3 on her domino scores. I rarely laughed, I rarely ‘chatted’. I only spoke to say which bit of me was in agony or to cry from fear and desperation. So when people say ‘you’re not your illness’ I can only respond with really? REALLY?
It’s getting better. As I improve my personality has come back – my long suffering partner can attest to this when I keep her up late at night chatting about my theories for what aliens would look like, or when I make a joke and then fall off the bed from laughing so hard – at my own joke.
I thought I was ‘me’ again, just with a bit of extra fatigue and a whole host of other symptoms. I’m starting to venture out of the house more often, try and reintegrate with society and all that. It’s been surprisingly difficult. As it turns out, I’m the alien.
Early on this attempt to ‘reintegrate’ I went to a house party. I was tired after dressing up, I was knackered after giving directions around the North Circular, I was exhausted after getting lost around the Hammersmith one way system. I got there, said hi to everyone and flopped down in a chair. Someone I didn’t know asked me what I was drinking. “Chilled filtered water!” I exclaimed excitedly. She gave me a weird look, there was an awkward pause, then she turned to talk to someone else. That was when I realised I’m still my illness. In my world, it was really exciting because I was only expecting luke warm tap water. I can’t drink much alcohol, I can’t have sugary fizzy drinks or fruit juice, and I’ve always had a bad reaction to the chemicals in the ‘diet’ versions. In that awkward moment it all hit me, just how set apart from the world I’ve become.
People chatted away about their jobs, the weather, London public transport. I had nothing to say about these things, I can’t work, I don’t go out much to see any weather and I haven’t taken public transport in so long my pre-pay Oyster card has got a thick layer of dust. The only thing I had to talk about was illness, healthcare and healthcare politics. Not really good party material, especially for people you’ve only just met.
“Would you like a cupcake?” Laid before me were a tray of delicious looking home baked cupcakes. Everyone was digging in and grinning like kids on Christmas morning. I politely declined. “Aren’t you eating?” was the next question. “Oh no, I ate before I came. I have food intolerances. I can’t have any of the ingredients in cake.” Cue another long awkward pause. Freakazoid alert! Let’s face it, it’s a bit weird isn’t it. Turning up to a party, sitting there not speaking and clasping a plastic cup of water for dear life while everyone else is laughing and joking, beer bottle in hand and periodically digging into the cakes, crisps and dips.
I could’ve made more of an ‘effort’. But that’s it, I didn’t have the energy to put effort in, my throat was too sore to speak much, and socialising as it turns out, is not like riding a bike. Unless by ‘bike’ you mean apache helicopter with a million controls and buttons. I’d forgotten how.
I still feel like I am my illness a lot of the time. But it’s ok, because by being this illness I’ve learned so much, I’ve grown as a person, and I’ve helped more people in the last year than I’ve done for the rest of my life combined. If your world revolves around illness then of course it’s going to seep into some part of who you are, and there’s nothing wrong with that. If you don’t feel up to socialising, don’t. If you like to hang out with other sick people, go for it. If you prefer to hang out with well people, do it. Don’t let anyone ever tell you off for just being who you are, or making choices that make you happier or healthier.