What you don’t see: an open letter from a uveitis patient

Heart under investigation; what you don't see
Dedicated to my immune system; the ultimate frenemy. Happy Valentine’s Day.

Of the things we take for granted about our existence, I venture to say vision is pretty high on the list. Even if your eyesight starts to go it can usually be fixed through corrective lenses or surgery. For me, and those with chronic pan or posterior uveitis, once it goes, it’s gone. A blur, a washout, a “blind spot,” never to return. 

There are known causes of uveitis. It’s a symptom of many other diseases, such as tuberculosis or arthritis. It can also be caused by damage to the eye. However, for the many of us, the cause is unknown.

From the day in December that I first saw a change in my visual field, I was passed from doctor to doctor. I started on an aggressive course of prednisone and sent to the University of Washington Eye Institute where I have since been. I was tested for countless diseases and maladies only to have my condition classified as “idiopathic.” Likely categorized as an autoimmune disease in itself, my form of the disease is accompanied by other complications within my eye. It’s taken the vision from a decent portion of the right side of my right eye.

But, when you look at me you don’t see.

You would never guess that I’ve sat through countless dilations, pressure checks, optic photography, Optical coherence tomography (OCT) and the like. You’d never get close enough to notice the tiny blue mark from the steroid implant in my right eye. Or guess that I have two stints to reduce eye pressure and artificial lenses in both eyes. That nearly all of my earned sick time at work goes to my appointments at the Eye Institute. It’s given me such an immense respect for medical technology and those who research and operate it. I never take health insurance for granted.

When you look at my two beautiful sons you don’t know that for a while I was on immunosuppressants and high doses of steroids that were contra-indicative to pregnancy; that I thought I would have to choose between vision and having children. Now, watching them play and fight and laugh is such an honor.

When you look at me you don’t know that there are times when I live in somewhat of a fog. That busy stores overwhelm my lack of vision. That I’m not as adventurous or confident as I once was and that it’s something I struggle with daily. It’s forced me to slow down, take a breath and allow myself adequate time to do things like get to new places or read packaging or labels in a store. 

When I am sick again this winter you won’t realize it’s because once again, every day I take immunosuppressants to slow my body’s response to the battle that is raging in my eye. That vaccines aren’t an ideological game to me. That I take pills and supplements and work on my food and lifestyle choices to preserve my vision. 

In a world where “self-care” is such a buzzword it can be hard to proclaim self-love from the rooftops when your body won’t stop attacking itself.  I’ve had to make the decision that just as I am managing the physical aspects of this disease, I must also confront the psychological. I’ve learned to allow myself stages of grief and acceptance. When the anger comes, I feel it, but I know I can’t live there. I’ve got to dig myself out; whether that’s with facials and bon bons… or not. (A good read: What to do when self-help fails you, according to a chronic illness advocate) Uveitis is a part of my life but I determine how big of a role it plays to some degree. In the end, I think I’ve come out stronger. 

Because when I look at myself, I see someone who isn’t a victim of circumstance or side effects. I see someone who is learning to live life better, no matter what it throws at me. I see someone who knows what it is to see. 

Related reads:

I Suddenly Started Losing My Vision At 29. Here’s How It’s Changed Me.

What People With Invisible Illnesses Want You To Know

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