What You Don’t See: A Uveitis Patient Story

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 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. 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.

Wendy LaRocque

Wendy LaRocque

little over 11 years ago, I noticed something was “off” with my vision. The next several years were spent bouncing from doctor to doctor trying to figure out why my optic nerve was hemorrhaging and a blind spot was developing in my right eye. My official diagnosis is mulitfocal chororetinitis with subretinal fibrosis, a type of posterior uveitis. Throughout my journey, I’ve alternated between spending hours researching (desperately grasping for a “why’) and burying my head in the sand (if I don’t acknowledge it, maybe it will go away). I’ve tried everything my doctors and I can think of, from immunosuppressants and the Retisert implant, to elimination diets and yoga. My condition is the definition of chronic.

By 2013 my left eye was also affected. I started receiving intravitreal injections in 2014 before the birth of my first son. I’m still getting injections these days, along with trying a host of different medications, and complications from all of the treatments persist. Although tenacious, the inflammation does respond to treatment and I am in caring and capable hands at the University of Washington Eye Institute in Seattle, WA for which I am very grateful. I created a website, www.livingwithuveitis.com as my attempt to document thoughts and information I’ve gathered, learn something and hopefully help others. It’s a place to focus on the disease and then leave it so I can live my life, taking only what serves me.

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