A man is gripping the car of a twisty roller coaster. The giant sun in the background looks like an eyeball.

The Rollercoaster Ride That Is TED

Once I seemingly had my Graves’ disease a little more under control, that’s really when I noticed a significant issue with my eyes. I was sent to an eye doctor that specialized in thyroid eye disease (TED). During the first appointment, they ran a ton of tests and determined the inside of my eyes are not damaged, which was good news. However, the real issue is the eyelid muscle, and one being pulled back more than the other, making it seem like one of my eyes was bigger than the other. I was embarrassed all the time and I wanted it fixed.

After my initial consultation with the eye doctor, I went back a few more times for follow-ups. Every time, she would tell me I look great and we will keep watching it. At that point in time, the last thing that I wanted to hear was “You look great,” because it was the complete opposite of how I felt internally and how I felt I looked! That made me think about phrases that someone with thyroid eye disease (TED) may not want to hear.

My mental health

It didn’t help that my mental health was at an all-time low during this period of time. I couldn’t stand looking at myself in the mirror because I felt my eyes were so noticeable and everyone around me would wonder what was up. I could not take looking at photos of myself. Especially when they were candid. If I knew a photo was being taken, I would squint a little so that way I knew both eyes would look the same size. It was a really awful feeling.

Feeling defeated

I know for me personally, going to an eye doctor and having them tell me I looked great, was really triggering. How is someone sitting there telling me my eyes look great when you can clearly tell there is a serious issue with them? In hindsight, I am sure this doctor meant nothing by it and was just trying to remain positive because I was pretty defeated every time I walked into her office. I just felt hopeless and it felt pointless for me to continue to go there every few months to be told the same thing when I felt nothing was changing. Thinking back, it was really good that I went for follow-ups and checkups because at least I knew it was not getting worse. Maybe it did look like my eyes were getting better, but it was something that I wasn’t ready to hear unless there was an actual difference to me. Everyone is different though.

A roller coaster: My thyroid eye disease

I like to call my thyroid eye disease journey a roller coaster because it was and still is. To this day, when I see my endocrinologist we talk about my eyes and she looks at them. Currently, I am not seeing the eye doctor I used to because right now my eyes seem to have gotten a little better. It is something that is constantly being monitored.

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