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

3 thoughts on “What you don’t see: an open letter from a uveitis patient

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