It often takes Myositis patients an average of 3-5 years to be accurately diagnosed. This statistic holds true for most rare diseases. I can report that this was also true in my case. I started having symptoms in early 2018, shortly after being horribly sick for about 12 weeks. Seemingly out of nowhere my eyes started to swell. I saw countless doctors and specialists, opthalmologists, neurologists, allergists, none of whom could explain why my eyes looked like I had been pulling endless all-nighters without any of the fun. I developed my second symptom in 2019 when I noticed my gait started to slow. I’ve struggled with my weight most of my life, so when the neurologists had no viable explanation for why it felt like I was walking in quick sand or lilting to the side, I chalked it up to my poor physique and set out on a walking challenge to get myself in-shape. (Side note, at the time I was also dating a guy who insisted exercise would fix everything and I was heavily drinking the kool-aid. What can I say, love isn’t blind but it sure can be dumb, but I digress.) It wasn’t until I went back to the doctor in early 2021, now using a cane, unable to raise my arms over my head or safely climb a set of stairs, that my new doctor saw the red flags. Knowing what I know now, someone should have started to put these things together a lot sooner…

Unfortunately, our medical system isn’t designed to quicky assess for and diagnose rare diseases. In fact, there’s a common expression doctors use when teaching medical students, “when you hear hoofbeats think horses, not zebras”. Basically, they train new doctors to look for commonalities, not irregularities. And I get that, rare diseases are just that, rare. But while doctor’s are looking for quarter horses and thoroughbreds we’re standing here with our shiny stripes begging for help (yes my stripes are shiny, if I have to be this kind special I’m going to be extra af, ok?!). The danger of this training is that while we’re bouncing from appointment to appointment, trying on specialists like prom dresses we’re also deteriorating. Our symptoms are worsening or multiplying, we may be losing our abilities and we’re terrified because no one can tell us why any of this is happening. And while being told you have a rare and incurable degenerative disease is way less fun than it sounds, truthfully the not knowing was far worse. So as scared as I was when I got the phone call that day, I will forever be grateful to that doctor for finally giving me some answers. Because of her I was able to give a name to my issues, to start to find doctors who had at least heard of dermatomyositis, and most importantly find my community. In the world of rare zebras, myositis patients are some of the rarest. There are approximately 75,000 of us in the United States. 75,000. In a country of 346 million (give or a take a few), there are only about 75,000 of us! And while no two of us are the same, our community is a safe place where we can go “oh my gosh, you have that too?!”. The weird things, the hard conversations, the scary things, the uncomfortable moments, our tiny community is so gifted in supporting one another and giving space to be our most authentic, shiny striped selves.

So the next time you hear hoofbeats, think zebra’s! We’re out here. Hey y’all, maybe we should play the lottery?!