A woman covers her face with her hands and peeks one eye out.

My Thyroid Eye Disease Journey

Last updated: February 2022

My Thyroid Eye Disease (TED) journey started when I first got diagnosed with Graves’ Disease. I have always had big eyes ever since I was a child, but my eyes were bulging a lot. It was really noticeable. My eyes were also really uncomfortable. They would water all the time, or it felt like I had dry eyes and they always felt really tired. My eyelids felt heavy to the point where it was distracting. I remember driving and feeling as though I had to blink my eyes a million times because they just felt so heavy and uncomfortable. It was a scary feeling.

After I got radioactive iodine treatment for my Graves’ Disease, the bulging was not quite as bad. However, over time one of my eyelids started to pull back more than the other so it looked like one of my eyes was bigger than the other one. The weird feelings in my eyes were still there, too.

Seeing a specialist

I saw an eye doctor that specialized in people who have Graves Disease and then develop TED. After many tests, I was told that there was nothing damaging to my eye on the inside, which was good to hear. The doctor told me that over time it will slowly go back to normal. I was told that I should keep going to see this specialist eye doctor so that it could be monitored. I would go every few months, drive an hour and fifteen minutes, spend a ton of money, just for the doctor to tell me everything looked great and it was getting better. I remember thinking that I could not keep going if she is going to keep telling me that I look great when I didn't feel like I looked great. I felt the opposite. I wanted to scream! She was right though, in time it did slowly start to get better. While it is still there, it has become less noticeable.

The emotional impact of my TED journey

Dealing with TED is hard. For me, I’ve become a little self-conscious. When photos are taken of me I am constantly looking at myself and noticing how one of my eyes looks bigger than the other. I cried a lot about it because even if other people don’t notice it, I noticed it. It’s my face and they are MY EYES. It got to the point where I didn’t want to have my photo taken and sometimes I didn’t want to leave the house, because I was worried about how I looked. I totally didn’t feel like myself. My mom would tell me all the time that you can barely notice it, but I felt like it was the first thing people noticed when they looked at me. I definitely stayed home more because of how self-conscious I was.  What I can say is in my case, it is improving. Patience is key, but in my case the doctor was right. My case of TED was relatively mild and I know there are cases more severe than mine. I am grateful that mine is a mild case because I know it could always be worse.

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