My Response to Misconceptions About Thyroid Eye Disease

Over the years I have heard many myths and misconceptions about thyroid eye disease (TED). Rare diseases are often misunderstood, and this is one of my many attempts to address inaccurate information.

Misconception #1:"TED just makes the eyes look different - it’s a cosmetic problem."

Certainly, in the worst days of my journey with TED, my eyes looked VERY different. Because of this, TED severely affected my mental health. I could not recognize myself in the mirror, and emotionally I was in a very dark place for years. Yes, TED made my eyes look different, and that is not insignificant - it is traumatic, and it affected many aspects of my health and daily life.

I previously wrote about how TED affected my sleep and energy level - due to the proptosis and eyelid retraction (both of which were responsible for making my eyes look different), my eyes were unable to fully close at night, causing me to constantly wake up in the middle of the night, grasping for eye drops to help sooth my painful eyes.

Also, individuals with TED may experience many other symptoms that are not visible from the outside. These might include pain, light sensitivity, double vision, and vision loss.

This is why I often get upset when I hear from community members who said a surgery would not be covered by insurance because the insurance company believes the treatment is cosmetic. TED is a serious medical condition that causes serious, life-altering symptoms and complications.

“TED always gets better on it’s own.”

My TED specialist explained to me that some people’s symptoms naturally get a bit better as they near the end of the active phase, but he did not think that would happen in my case. My symptoms were quite severe, unfortunately. Similarly, my endocrinologist explained to me that some people with Graves’ disease go into spontaneous remission (normally within the first 2 years). I did not. With both of these conditions there was nothing that I did wrong or should have done differently. Some people are just luckier than others.

“Treatment makes everything go back to normal.”

I once had a friend tell me, “Don’t worry, you’ll get your surgery and everything will be back to normal!” How I wish it were that simple. Certainly surgery can help correct some of the damage caused by TED, but depending on the person and severity of symptoms, it does not necessarily fix everything.

While surgery definitely helped me a great deal, I do not look exactly the same as I did before TED. I still navigate some symptoms like dry eyes on a regular basis. And frankly I will never be the same. The emotional trauma that this disease caused is going to be with me for a long time, and I am continuously doing my best to move forward.

Also, it is worth noting that not every treatment works for every person, and there is always a possibility of side effects or other complications.

“Getting treatment cures TED."

If I had three wishes, surely one of them would be a cure for TED. But alas, neither magical wishes nor a cure exist. I had multiple surgeries in my inactive phase, which helped to correct some the damage TED caused - but this is not a cure. As much as I hate to say it, even after receiving treatment it is possible for a new active phase to start someday. This is a fear that I will have for the rest of my life, and I will continue to hope for scientists to discover a real cure.