Diagnosed with Uveitis at age 11 and How that has affected my Life: By Frances

I was diagnosed with uveitis related to juvenile rheumatoid arthritis at age 11. My school detected vision loss on a routine exam. When I went to the ophthalmologist, for what we thought was glasses, the uveitis was diagnosed. Unfortunately, I was then inappropriately treated for ten years with steriods, which left me with a lot of structural damage in both eyes. My left eye is legally blind as a result. Thanks to Dr. Foster’s state of the art care and the starting of immunomodulators, my vision in my right eye was saved and I have been in remission for nine years.

I thought I would focus this story on those issues that change ones life, when you have a chronic illness, such as uveitis:

  1. Frequent eye appointments/eye drops – I do not recall being negatively affected by either of these nor harboring any resentment. They became part of my routine and still are. I put my own eye drops in and managed my medications from the time I was diagnosed. When I became 19 or 20, it became extremely important for me to attend my eye doctor appointments alone, which my mother, although hesitant initially, did let me do.

  2. Body Image Changes -In the seventh and eighth grade, my left eye became opaque secondary to my cataract and also the eye started to float outward. My male peers in school would tease and would ask each other within my hearing distance, who is she staring at, me or you? It was extremely embarrassing for me. As a child, I was petite and because of the chronic steriod use, I gained a lot of weight. It started at that sensitive age of 12 -13 and I was very self-conscious of this weight gain. The same issue arose when I was in college. My steriods were increased over the summer break, and when I returned to school I was 5-10 pounds heavier. I heard my peers talking about how much weight I gained over summer break. I didn’t know how to deal with this, whether or not to let others know it was medication related. I found this to be very difficult to cope with. My pupils were always uneven and when I was young, I was again very self-conscious of this defect. I worried that others would notice it and think I was odd.

  3. Emotional Effect – I can’t remember emotions of my own when I was younger. I feel that it was because I didn’t understand what was happening. My emotions were always affected by my mother’s emotions. When I was first diagnosed, I only cried after I saw that my mother was crying. If my mother didn’t react, then I didn’t react. I do remember being fearful in regards to my symptoms. I never had symptoms, initially. I saw floaters in my right eye several years after being diagnosed. I knew they were not right, but for whatever reason I was scared to tell my parents about them. I would initially be in denial, hoping they would go away. I don’t know why I was fearful and eventually I would tell. As I grew older, I realized I was being led down the wrong path for treatment and became angry and started advocating for myself. I asked for a referral to another doctor, which eventually led me to Dr. Foster. When he first told me that I would be blind in a few years, if I didn’t move on with treatment and try immunomodulators, I was in shock as no one ever told me that before. I always heard, “it will burn out”. When Dr. Foster said, I needed immunomodulators, and I shook my head, no, out of fear. I was fearful of immunomodulators, thinking of them in terms of chemotherapy for treating cancer. I did a lot of reading and realized that they are safer than using steriods chronically. Unfortunately, I made my decision too late and suffered more structural damage to the eye. It took a while for me to internalize that this is a vision-robbing disease and prompt treatment is needed as, again, for ten years, I was told, “it would burn out”. The last comment on emotional effect is a feeling of frustration by mother’s eternal optimism. I would try to vent to my Mom, regarding something going on with my eye, in hopes of sympathy. Unfortunately, my Mom would and still does say, ûoh hunny, don’t worry about it, you’ll never go blind or you’ll be fine”. It’s now a standing joke and I’ve replaced the frustration with humor. However, I would still find emotional support, instead of optimism, more helpful to ease the pains of uveitis.

  4. Loss of Vision and lack of Depth Perception – I was right eye dependent by the time I was diagnosed and never even noticed the vision loss in my left eye. I don’t remember what it was ever like to be binocular and have depth perception, so I’ve never miss it. I am grateful for what vision I do have and I donÃt feel resentful that I couldn’t do certain things because of my vision.

In retrospect, as an adult with uveitis since my childhood, I don’t consider myself to be different from others because of having uveitis. I don’t think of my chronic illness of uveitis everyday nor weekly. Being in remission, helps to let go of the “what ifs”. I sometimes worry about loosing the vision in my only good eye from trauma or glaucoma, but I don’t dwell on it. My uveitis is a part of my life now. I often think that having grown up with it, I may even feel a void without it.

In thinking about what would have made my experience better, I would have to say, help in those aforementioned areas that I found difficult to cope with and to have had my feelings validated by my parents when I wanted to vent.

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