Sarah Golden
My name is Sarah Golden. I am from Atlanta, GA, and recently moved to Chicago, IL after graduating from Georgia Tech and beginning a job in tax technology at an accounting firm.
How old are you?
23 years old
How old were you when you were diagnosed?
21 years old
What is your diagnosis?
Pars Planitis (Intermediate Uveitis), Retinal Vasculitis, and Cystoid Macular Edema.
This fluorescein angiography, taken just a few days after the image above, details the inflammation and subsequent leakage in my blood vessels. This is the reason that my vision is blurry
How did you cope with being diagnosed?
When I first had symptoms of blurry vision and floaters, I was also having issues with really painful stomach aches and missing a lot of schools. I was very sick, and the pars planitis diagnosis did not make me feel any better. I felt disconnected from everyone that I knew since no one (including myself) had even heard of uveitis and understood what I was going through. Immediately, I began studying patient testimonials and reading research studies. I joined Facebook groups for other uveitis patients; even though everyone’s story is different, it is very comforting to talk to others who are in a similar position. Most importantly, I began to rely on my friends and family for support when I needed it. My biggest cheerleader, my mom, was always there to listen to me complain about the pain, read research studies that I sent her, and drive me to countless doctor’s appointments.
What has been the most difficult since your diagnosis?
My vision in my left eye has recently become bad enough that I am no longer comfortable driving. Because I live in a big city with prevalent public transportation, this is not a major issue with respect to my day-to-day life. However, I sometimes feel embarrassed and helpless knowing that it is no longer safe for me to do a basic task that most people don’t think twice about.
It can be lonely to struggle through a rare disease, the mental, physical, and emotional pain that comes with it, and the following consequences, such as not being able to drive. I often feel isolated, especially as everyone around me is living their normal life while my health is something that I have on my mind constantly.
Have medications affected you in any way?
I have been given a variety of different medications, including countless doses of prednisolone eye drops (partnered with even more pressure-reducing eye drops) and 2 sub-tenon steroid injections into my eye to reduce inflammation. Unfortunately, I have not seen a lot of improvement in my vision or eye pain with either of these. This leaves me feeling unmotivated, as it is difficult to be stuck with the negative side effects but see no actual progress. However, I am trying to stay positive and be open-minded to trying new medications that my doctor is now recommending.
What is your experience with doctors and medical care?
Soon after my diagnosis, I went on a study abroad program and found myself in China with a rapidly declining vision. I found a uveitis specialist there, and this first opened my eyes to the wide variety of healthcare systems, medical training, and treatment options proposed around the world. Over time, both in China and the USA, I have seen some doctors that I consider extremely trustworthy, knowledgeable, and passionate about helping their patients. Regardless, no matter how great a doctor is, it is important to be your biggest warrior because no one cares about you as much as you care about yourself. For you, one wrong decision, even a small one, may literally be the difference between having a vision in your eye versus losing it forever. However, for a doctor, after a mistake, they are fortunate enough to simply return home to their family and go about their normal life.
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What is a misconception that people have about uveitis or just about vision impairments?
With any disease that cannot be physically seen, I think people have a harder time remembering and even believing that someone is struggling through the pain. In my case, on the outside, my eyes look normal. Although I believe people generally have good intentions, vision impairment is not common and it is hard for others to connect and sympathize.
How do people react when people find out about your diagnoses?
In general, my friends and family have been very supportive and offer to help however possible. While I know they don’t quite understand what I am going through, they help me to think positively and listen to me complain when I am down. However, I do not talk about my uveitis with people who I do not know well, often because I am scared to face their reaction.
What advice would you give to someone who has been recently diagnosed and or is struggling?
Uveitis is a scary diagnosis that should be taken seriously. It is important to do research and learn as much as you can to be your biggest warrior. I would strongly recommend joining Facebook groups to connect with others in a similar position (two that I am a member of are “OIUF’s Adult Support Group for Uveitis/Ocular Inflammatory Disease” and “Living with Pars Planitis”). While the comments and advice here are not necessarily from a medical professional, it is comforting to read others’ experiences and meet people who are fighting the same battle.
However, I think it is equally important to try to resume a normal life as much as possible. Spend time with your loved ones and do the things that make you happy. I personally enjoy exercising, cooking, and reading when I have free time, as these take my mind off of my eyes for a while. While uveitis is a big part of your life, it is not the only thing that defines you!
