This Is What Uveitis Is Really Like (And What It Did To Me Long-Term)
It was 2011 when I first started experiencing uveitis — eye inflammation that affects the uvea, or the middle layer of the eye tissue. At that point, I was totally clueless as to what ankylosing spondylitis was, and never really having dealt with health issues before. I woke up one day with a pain that I can only describe as being punched in the eye from the inside with a fist made of sandpaper. Uveitis.
It hurts and burns
It was like I had something in my right eye — something grainy and pointy — and also something behind my eye, like a fist, pushing on it. If I opened it, the light would literally burn as if I were a vampire (this is called photophobia). I also saw floating fragments and bursts of light. That first time, I hid in the bathroom in the dark, cleaning my eye out with cool water hoping to flush whatever got "into it."
But it never stopped. My eye got redder and more swollen, to the point that I could barely open it. I took myself to my optometrist, the doctor who prescribed my contact lenses. He told me to quit wearing them, that I'd given myself contact burn. Yeah, right, I thought, but I wasn't in a position to argue. He was a doctor and I was just a girl with a flaming Cheeto eyeball.
I knew it was something bigger
The truth is, in my heart, I knew something was wrong (don't we all?) but I was getting a degree, I was broke, and I was clueless. The idea of an inflammatory or autoimmune-mediated disease had literally never crossed my mind, and I was too busy to be sick! Ah, the ignorance of youth.
I knew my mom had thyroid issues, but even then, I was clueless as to the systemic effects of a disease. If my eye hurt me, I thought, it must be scratched. And yet, my intuition knew better.
If I really thought about it, I was tired a lot. I had recurrent and frustrating gut problems. And sometimes I would get achy for no reason. But back then I just chalked it up to college partying and an over-achiever lifestyle.
Then it got much worse
After finally waking up with my third bout of uveitis, I called an ophthalmologist who urged me over the phone to immediately come in or I could risk my eyesight. The pain felt like I would surely die. My entire face was on fire. I could barely see out of the eye and I had to wrap a black cloth around my eye and slink into a cab's backseat to get to the doctor. I was sobbing like a baby. The doctor, who must have known what I was going through, immediately came out to the waiting room to put corticosteroid eye drops into my eyes.
I remember that I was by far the youngest person in the waiting room. Funnily enough, I'm still the youngest person in the waiting room, especially at the rheumatologist. It's a humbling feeling.
The steroid drops — hallelujah! — helped pretty rapidly; the immediate flashing torture decreased, even if I was left with pain, redness, and a swollen eye. I remember thinking modern medicine was the coolest thing EVER. He diagnosed it as iritis/uveitis.
I pushed for a diagnosis
After that sort of uveitis experience happened a few more times, I pressed the ophthalmologist to not write it off. He had another doctor come in and see me and together they decided to get bloodwork done. They brought up words like sarcoidosis and Crohn's disease and toxoplasmosis. They asked if a cat had scratched me. Nothing else was bothering me, I said.
Symptoms didn't really pop up for a while but after years of fatigue and back pain, I finally got an HLA-B27 positive testing and then years after that saw radiographic evidence of AS. By that point, I'd learned that it ran in the family.
It was a puzzle that all began with the idea of "contact irritation." Crazy, right? I still look back and think, "I wish doctors had taken me seriously."
In the end, the steroid drops had given me a small cataract (an annoyingly common occurrence), and my vision decreased a bit in the one eye (I never got uveitis in both eyes, which is also common). The rampant inflammation had done damage and ironically, so had the medicine.
Take your symptoms seriously and listen to your intuition
Today, I don't think of anything as an accident. If I'm worried about a health symptom, I make sure that I'm seen and understood. You should too! Take symptoms seriously and know that the body is a complex and beautiful Rubix cube of mystery. Everything's connected. It's a puzzle. And sometimes it just requires awareness and self-advocacy.
PS: In my most recent eye exam, luckily, my eye doctor said my eyes were looking very healthy.
How much about your AS do you share with others?