The Long-Term Effects of Uveitis

I was freshly out of college and going into grad school when uveitis struck — and it struck hard. I was otherwise perfectly healthy, a privilege that is glaringly obvious to me now. I had never broken a bone, never had surgery, and certainly never spent a moment of my time thinking about autoimmune disease.

When I heard people talk about arthritis, I couldn’t fathom that your body could be in pain from something invisible. What? How?

Plus, arthritis was just for people like my grandparents, right?

I admit that I was both ignorant and willfully ignorant. I chose to ignore pretty much anything to do with health. It just didn’t seem relevant to me. I suppose youth is both naïve and without compassion for some of us, so I certainly learned along the way how wrong I was. But I’m not here to chastise myself. I completely accept that I was young and inexperienced, and so a big part of my life now is educating myself and others.

Red, painful, irritated

I was taking a dancing class when uveitis really started acting up. I hadn’t known it at the time, but I thought I had contact irritation. My eye was red and dry and in pain, and dancing was difficult. I kept having to excuse myself to flush out my eye with cold water. It felt like I couldn’t make it through class, and when I took the subway home I had to cover my eye from the bright lights above.

Later that night it got so bad that I vomited. I ended up calling my optometrist, who told me I had contact irritation. He told me to take my contacts out and keep them out for a few weeks. When the pain didn’t let up, I eventually saw an ophthalmologist when I was convinced something was terribly wrong. (Hint: I was right).

This ophthalmologist ushered me past all the patients in the waiting room and into his office, where he shut the lights and put drops of steroids into my eyes. A few minutes later I felt like I was floating on cloud nine; the pain and discomfort were shrinking away.

He treated my uveitis, but there were no real discussions about why I was getting it over and over again. Eventually, he brought in another ophthalmologist and they discussed sarcoidosis and Lyme disease. I was terrified beyond words, and from there I ended up getting an HLA-B27 test at a specialty hospital (I was positive). This led me down my road toward diagnosis.

Saving my vision and my life

Had I not had the steroid medication placed into my eye, there’s a chance I could’ve gone blind. That medication probably saved my eye and my vision—and my life in many ways. Today I still struggle with one of my eyes. I have a medication-induced cataract, and flashes and floaters that never go away.

Plus the vision is fuzzier and weaker in this one eye. Ever since having uveitis my night vision is also extremely limited. It’s hard for me to distinguish spaces and patterns in darkness, and sometimes my eye invents shapes and spaces that aren’t really there.

I’ve never had a vision problem before uveitis (despite needing glasses), but there is absolutely no doubt to me that the rampant inflammation — and then the prolonged steroid usage — led to lifelong vision issues.

I have one insight for you: If you suspect uveitis, don’t wait. Don’t sit on it. Get checked immediately.