I made myself really ill once. Obviously, accidentally. But I didn’t understand how to look after myself.
As usual, I was doing too much: my A-level mocks, running a local youth group, acting as the programme controller for a hospital radio station. That probably would have been enough on its own, but I’ve never been one to understand when enough is enough. In my infinite wisdom, I then decided to arrange a residential weekend, including a Ball on a Boat (these were quite the thing in the 90s in North London), for the national youth group. Single-handedly.
There are many things I’ve done in my life that started as terrible, terrible ideas, then became terrible, terrible experiences. This was the first of them.
If you’ve ever tried to arrange an event for more than three people, you’ll know what a hassle it can be. Arranging a night out for the other parents in your daughter’s class? Challenging. Sorting out a trip away with your buds? Tiring. Planning and managing a weekend away with 75 fellow teenagers, where you’re solely in charge of organising food, entertainment, accommodation, transport and the sodding Ball on a Boat? A living nightmare.
I barely slept in the two weeks before it. There was so much to sort, plus people phoning me up at all hours of the day and night. On top of that, I’d caught a nasty cold and really felt quite horrible.
The ball wasn’t the disaster it could have been. By some strange grace it all went reasonably smoothly. I think I even managed to have some fun at some point, but I don’t remember much about it. What I do remember—with hideous clarity—is the morning after the event finished.
I woke up, but I couldn’t get up. My body was heavy, unresponsive, seemingly unconnected to my brain. It wasn’t that I was so tired that I couldn’t get up. I simply couldn’t get up. My limbs weren’t working.
The next 18 months of my life are strange and painful to look back on. I had many good periods, where I could get to school and enjoy a normal day. And many others where my body simply shut down again. One day, I was sat at the kitchen table, looking at a glass of water. I was thirsty. I desperately wanted to drink. And I tried to lift the glass but I couldn’t even get it off the table. It was simply too heavy. I simply couldn’t do it.
After numerous tests and trips to the doctor, I got what was effectively a non-diagnosis. The doctors had ruled everything else out so, by a process of elimination, they told me I had ME / Chronic Fatigue Syndrome*. It’s still really poorly understood today, but 25 years ago things were even worse.
I really don’t remember much from that time but the one thing that did stick is how people treated me. A number of my friends—not proper friends, I now realise—didn’t believe I was ill. I was teased for having “yuppie flu”. I was routinely pulled out of classes by my teachers—when I was well enough to attend—and accused of faking my illness. My mother would write me notes explaining my absences; I was accused of writing them myself. The school eventually threatened to keep me down a year if my grades didn’t improve. I wasn’t offered any help, only the prospect of punishment.
I still don’t know exactly how I got well*. I tried everything: diet, vitamin B injections, protein drinks, hundreds of strangely-named supplements. And something must have worked as the cycle of wellness, relapse, wellness, relapse finally ended. There was no fanfare: one day I simply stopped relapsing and stayed well. It took a long, long time to start trusting that I would actually continue to be well this time.
Did I learn anything from my illness? Well. I didn’t learn to pack less into my life, I continued to be strenuously, stupidly busy. I didn’t even learn to take better care of my body until relatively recently. But I did learn to be grateful for my health. It’s still easy to take it for granted, but everytime I feel unwell or tired now, the fear returns. Perhaps the relapse is finally here. Perhaps this has only been an extended, but ultimately temporary, period of wellness.
I am profoundly grateful that I was only unwell for 18 months. I know some people suffer for a lifetime. If you have any form of chronic illness, I wish you good health plus compassion and support from those around you. If you don’t, I wish you not only continued good health but also an appreciation of it.
And for me? I hope my body never takes me prisoner again, but I accept that it’s out of my hands.
*I’ve been reading more about ME recently and I’ve been questioning my (non)diagnosis of it. Apparently most teenagers who develop viral illnesses will recover spontaneously within 2 years during their teens to early 20s; this would explain my relatively swift recovery. Only a small percentage of teens who suffer from a viral illness like this will develop long term ME/CFS. So, it’s quite possible that I didn’t ever have ME in the first place. I’m deeply thankful for that; the insight into what life must be like, with full-blown ME, was more than enough for me.