I suffered from juvenile Dermatomyositis (JDM) as a child- only, no one knew what it was. The earliest signs and symptoms mimicked allergies, and the doctors thought I had eczema... But by the time I was about three years old, I began to show signs of muscle weakness. My parents took me to many doctors, but no one could figure it out. In desperation, I was even taken to traditional medicine practitioners (because that’s what was done then, because the ‘elders’ would put so much pressure on young parents that it was not a matter of choice), but no one could help. I began to show below normal growth (and I was in fact underweight for all of my childhood and well into adulthood). One doctor told my mother I would not live past my teens.

I hate to think what my mother went through. In addition to my ‘sickness’, she had to deal with the breakup of her marriage, and raising another (younger) child too. I gather, though, that she was very pragmatic about it, as most African parents are. She did what she had to do. I know she blamed herself, thinking she had taken something that she shouldn’t have during her pregnancy. She often said as much to me when I was younger. She did her very best, but when the doctors seemed to give up trying to work it out, there was very little else she could do.

And so I grew up... Against all odds, seemingly. I thrived academically, but battled physically. It’s hard to be different, and I knew very early on that I was very different. One of my earliest school memories was running a race in which I came last- but not respectably last, no: I came in maybe ten minutes after everyone else. I don’t remember what sort of distance we had to run; only that at some point as I ran I began to feel like my leg muscles just would not work. No matter how hard I tried (I could feel my brain straining, screaming go go GO!), my legs seemed unable to generate any kind of strength. I think I made a vow then that I would never allow myself to be humiliated like that again, and I went through primary school using excuse notes to get out of anything that even smelt athletic. And then I broke that vow when I got to high school- but it wasn’t my fault. We had compulsory athletics, and the teachers wouldn’t hear of me sitting it out. The feeling is hard to explain, but it’s a bit like those dreams where someone is pursuing you, and you can’t get your legs to work. That episode shamed me more than I can say- public humiliation when you’re on the verge of teenagehood is like death. But it freed me from trying ever again; I was free not to participate. And participate I did not, for far longer than I want to say.

I was ‘sick’ for longer than I have been well, and there is a lot to say about that.  What was amazing was googling my symptoms sometime in the last few months, and discovering that I wasn’t the only one in the world after all, that my signs and symptoms were verifiable, identifiable... Explainable. There are no words for explaining what living with an ‘illness’ for thirty years without a diagnosis is like. Understanding lifted a load off my shoulders, a load that I had no idea I had been carrying. 

Knowing is such a gift. Knowing takes some of the shame away, the shame that says something is very wrong with me, so wrong that no one knows what it is. Knowing helps me brush off the ignorant comments I have lived with all my life, that cut me so deeply, that I had no arguments against. Knowing helps tie all the seemingly disconnected symptoms together- the muscle soreness I used to battle, the fatigue and weakness, the scars, the hyperpigmentation on my face. Knowing seems to make it just a little bit easier to live with the lifelong marks I carry from that battle. Somehow, knowing frees me to finally be more than the things I am on the outside, the ones that seemed to encompass my life for so long. It seems silly to have made my physical struggles such a huge part of my identity, but I didn’t know better. Somehow identifying it as JDM brings the monster down to size, and I can finally see past it.