I Was Diagnosed with a Rare Disease

On Thursday, I had what I thought was going to be a routine annual eye exam: I would go in, question whether option 1 or 2 was really clearer, panic that I tell them the wrong thing and end up with the wrong prescription, and order new contacts. What I got from an optometrist who is not my normal optometrist (who honestly reminded me of my dentist so I felt kind of more comfortable with her) is that there is bleeding in one of my eyes (at my horrified expression she assured me it's nothing I would notice) and that when she was looking at my eyes with the really bright light, there were spots she could see through my iris. You're not supposed to have holes in your iris. She diagnosed me with pigment dispersion syndrome, a rare disease that only affects about 1% of the population. The pigment from my iris is flaking off into my aqueous humor and can eventually block the drainage in the back of my eye, increasing intraocular pressure and resulting in glaucoma. A type of glaucoma that develops way earlier than other forms of glaucoma. I meet a few of the risk factors: myopia, age, and I am White. It's in the very early stages right now. She didn't link the bleeding to this so I'll go back in 3 months for her to check on the bleeding issue, and in 6 months to check my IOP and check on my optic nerve to make sure there is no damage. But there's nothing I can do, no treatment or preventative. The only treatments are for when it progresses into glaucoma, if it does (fingers crossed mine doesn't). After my appointment, I Googled like crazy, disassociated for a minute, drove back to work in tears and cried for a minute in my car. I ate my feelings that night. I needed a couple days to process. A guy I have been talking to let me word vomit at him via text and he said "that sucks but at least it's not fatal" and that's something I have to remember. It's not fatal.

My eyes are my biggest vanity, despite the disfiguring scar I have on the right side. I love my blue-grey chameleon eyes that I can make look blue or green based on what eyeshadow I wear. I've always been complimented on my eyes. While my astigmatism prevents me from seeing without corrective lenses and from wearing fun SFX contacts, I've never felt betrayed by them like I did the other day. I eat well, I exercise. Exercise may even be my eye's undoing: running--an exercise I love-- can cause further flaking of the pigments. At this point, if I experience blurring after exercise, I need to let my optometrist know, but she hasn't told me not to change anything. 

The hardest part of this is the lack of control I have over it. When my cholesterol was high and I felt like shit all the time, I changed my lifestyle and started eating better and exercising. When my bipolar disorder had me in its clutches and medication wasn't working, I started this blog. But this? I can't do anything and that makes me feel a little helpless. I hate it.