I was diagnosed with EDS when I was nineteen and I didn’t tell anybody for four years. It seemed private and I didn’t want the special treatment or the sympathy. I wanted to be normal and fit in. I got myself to A&E as required and back home again. I discussed issues with my doctor and after the initial humdrum stopped we reached the point of annual check-ups I couldn’t be bothered to attend. I was happy to seek medical attention for things that were dangerous or could be treated, but the rest seemed pointless and a waste of time and money. Chris was the first person I told quite early on in our relationship when a cut on my arm which should have been superficial tore open and left a gaping hole that gushed enough blood to leave me faint on the floor. It was a sit down talk on an early summer afternoon over a cold drink at the bottle bar in Bognor Regis. We talked about what names we liked, how many kids we each wanted to have and then about how my joints dislocate and my skin behaves like tissue paper. It wasn’t something I could hide from someone I lived with, but he hadn’t asked until I shared. I’d had enough of what I thought was useless doctors and it was another five years before I told anybody else and agreed to go back to at least get regular check-ups.
Chronic illness isn’t pretty or attractive or likeable or appealing. Someone with a chronic illness so easily becomes consumed by it. People’s perceptions of it over you perpetually run the risk of swallowing up your personal identity. I didn’t want to be devoured. I wanted to be a person, a pretty girl, a charismatic and loyal friend, someone who could be relied upon at 3 a.m. in the morning. Let’s face it, people call sick friends last for fear of inconveniencing them, and usually rightly so. Better leave me out of it, embarrassing things happen. Like fainting outside the door of the local A&E when Chris had broken his leg and I had exhausted myself. Or me hastily and sneakily putting a joint back in place the second time he broke his leg in the cubicle whilst seeing if he was okay and before anybody else, particularly his family or any of the medical staff noticed. Hospitals are guilty places. If you don’t hide very well, you’re captured, tested and detained sometimes for much longer than is required. I didn’t want or need the attention.
And so the subterfuge takes on a life of its own and becomes transparent. I’ve talked to six people today and didn’t tell a single one of them that I had a seizure. It wasn’t a big deal for me. I tired myself out too much again, missed a whole night’s sleep, am still a little dehydrated and the week after a seizure is thin ice for another. I was skating on thin ice and fell through, no big deal. It wasn’t very bad, I was fine again in under two hours and spent the day lounging on the couch trying to be as calm and collected as I can be. Should I have mentioned it? Why didn’t I? Sadly enough, because I forgot. I don’t think ‘hello, how are you?’ deserves the answer of ‘I’ve had another seizure’. I always think I’ll work it into the conversation in a little bit, but after a seizure my short-term memory and concentration is even more terrible than normally and as soon as the conversation goes onto books or quotes or the weather, I’m caught up in it and forget. It wasn’t until a few minutes ago when I started to feel all tingly and odd that it tripped my memory and so I call over Chris and say ‘Don’t panic. It’s no big deal, but I forgot to mention that I had another fit earlier today.’ He glares at me “I’m fine now,” I add, batting my eyelids and smiling and hoping that’ll help. It does a little. He relents and sighs. “You okay?” he looks me up and down. “Yeah,” I say. We leave it at that.
Is it a bad thing that I forget? Probably. But it’s also nice to not always remember every detail. I don’t mind sharing. I try to keep the people who care informed. But I also try not to dwell. Life goes on and sometimes just saying ‘this has happened, but no further action required’ is enough. And taking better care of myself wouldn’t be a bad thing either.