Relatively few people on this planet know what Uveitis is. It only affects about 1 in every 5,000 people globally, and so the pool of people who even remotely understand it is limited to those 1/5,000 people and their sphere of family, friends, and medical professionals. That doesn’t add up to much. It is nowhere near common enough to merit routine exams suggested by GPs, or to be mentioned as a disease afflicting a fictional character in a film or a tv show, or even to be mentioned as something that certain medications advertised on TV could be used to treat. (Humira, for example, is one of the most frequently advertised medications on American television and is often used to treat Uveitis, but is only advertised to treat Psoriasis and Rheumatoid Arthritis.)
So maybe now I can expand the pool of people who know what this disease is a little wider. This won’t take long. Ready?
Uveitis (pronounced YOU-vee-eye-tiss) is inflammation of the middle layer of the eye (the Uvea) caused by an overreaction of the immune system. It has nothing – I repeat, NOTHING – to do with UV rays. Two cases are hardly ever alike. Sometimes a cause can be identified, but in many cases, the cause is completely idiopathic.
I know this because I have it. I was diagnosed when I was in kindergarten (year 1 to the Brits), and was too young to understand what was going on. I was too young to understand why I had to take steroid eye drops every 2 hours, or why I had to go to the eye doctor’s every 3 weeks, or why I had to swallow 6 tiny pink chemotherapy-grade pills every week, – or why my mother cried every time she gave them to me – too young to understand why my father had to restrain me, kicking and screaming, as I had blood tests done every month. And far too young to understand the implications. That I’d be living with this into adulthood. That the constant doctor’s appointments and medication changes and frequent infections caused by a suppressed immune system would become my normal. That I wouldn’t be able to clearly remember a time when this wasn’t my life.
Honestly, it’s not so bad. I am not here for your sympathy, BELIEVE ME. Saying “I’m so sorry” is not going to magically teach my immune system to not be dysfunctional. I appreciate it, but that’s not what I want. I just want people to understand this thing. I know my disease does not define me. Most days, I get to live like I don’t even have it (because I am very lucky, and will explain why in a future post). I also do what I can to not harp on about it or “put it” on people… And okay, if you are reading this and ever went to school with me, you may be thinking that that is definitely not true, but the reason why I freakin had to talk so much about it in the context of school was because NO ONE KNEW WHAT IT WAS AND WOULD NOT BELIEVE ME WHEN I SAID I WAS SICK BECAUSE I LOOKED FINE.
See? All caps. It was frustrating AF.
So I guess I want to educate you all a little. To tell my story in order to spread awareness, as well as to give myself a little mental peace. (I have spent a lot of years refusing myself the opportunity to go over the whole thing, much to my psychological detriment.) And, considering I’ve just had a flare, I figured now would be a good time to return to blogging, and to start writing it all down.
Note: this blog is not about to become exclusively about my eye disease. I’ll go back to being an annoying yoga blogger in a few weeks. Bear with.