Living with uveitis: all variables and no control

Posterior uveitis has been a difficult disease from a “loss of vision” perspective, obviously, and because of all the medications and procedures and time sitting in the doctor’s office. However, for me, it’s the lack of ability to experiment with potential “treatments” other than or in addition to, medication that makes it so maddening. I’m a scientist by training and an experimenter at heart. I want to conduct research, form a hypothesis and test my hypothesis.

Uveitis exhibits an unpredictable and variable clinical course that may be sudden and limited in duration (acute), recurrent and interspersed with episodes of inactivity, or chronic and persistent. It can be difficult to identify patients early in the disease course, given that onset may be insidious. There may be no symptoms before visual impairment, especially in autoimmune conditions limited to the eye, and, consequently, patients may already have experienced vision loss at initial presentation.

Steven Yeh, MD, and Jessica G. Shantha, MD . The Burden of Noninfectious Uveitis of the Posterior Segment: A Review. Retina Today. July/August 2016

With my uveitis, as I’m sure is true with many other diseases, there is no immediate reaction to anything I’ve done, or at least no way for me to realize it. By the time something is amiss, the inflammation has occurred, along with the permanent scaring and possible or probable vision loss. Not really something with which to mess around. Last summer I went through a decent amount of discomfort to get off prednisone, which I have been on and off for 10 years now. I tapered off responsibly after receiving intravitreal injections and wasn’t off more than a month or two when I had more activity show up on my optos photos. So, back on again I went.

I’ve tried various diets, and restrictions (no gluten, do dairy, no nightshades, no added sugar) and different exercise regimes (high impact, low impact). Flare ups have happened when I’m stressed (new baby, no sleep) and when I would think least likely (normal routine or a vacation in Greece). I can’t discern a pattern because I never actually know how long something’s been going on in my eye before I see or feel symptoms (which is rare in itself; often, I’m oblivious to the whole thing). It’s not like many autoimmune disease where someone eats “X”, digestive issues ensue or when this do “Y”, they can’t get out of bed the next day.

The body makes it extremely difficult to get to the retina. For good reason; the retina must be protected! But, what happens when the barriers are compromised and protection is failing? What happens when the pathogen or process your body needs protecting from is within?

My answer is to try my best to control what I can. If I can stay out of the doctor’s office because the rest of my health is as good as I can get it, that that is something. I make my best attempt to follow the topics that I’ve outlined on the Healthy Vision page.

It’s hard when answers are nowhere to be found. You can go crazy searching for them. You have to be your own advocate and be educated, but also can’t get so wrapped up in research that you add more stress to your life!

A couple of years back my mom sent me an article about “living” with chronic illness (read it here). It’s a good read and I thought of it the other day and dug it up in my saved emails. I then realized the coincidence of what I had called this website (living with uveitis). But that is my wish for myself and others: not to just be alive with uveitis but to be living, in the fullest sense of the word. -October 27, 2019

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