"Are You The One with TED?"

It was the morning after my cousin got married to his longtime partner. I was sitting in the hotel dining area, sipping on a Starbucks, trying to wake up, when a woman I did not know much about joined our table. She’s on my uncle’s side of the family. I had seen her in passing the night before but we hadn’t spoken. She sat down across from me with her adult daughter to eat her breakfast.

I wasn’t paying much attention to the conversations happening around me between people who were at the wedding when she turned to me and asked, “are you the one with thyroid eye disease?” The question came out of the blue and I didn’t know how she knew this information about me.

I answered with a little confusion, “yes, I am.”

“I have thyroid eye disease too,” she said.

Meeting another person with thyroid eye disease

I had never met anyone in real life who had thyroid eye disease (TED). Up until that moment, I had not realized how alone I felt in my experience. While I had talked to the other contributors on this site who have TED a few times over zoom, it’s a whole different experience to meet someone face to face.

We shared stories about how this disease impacted our lives. The depth perception, the changing of the eyes, going to doctor’s appointments, and the medical experiences we each had gone through. The unpredictability this disease had bestowed upon our lives and how we each dealt with it.

My mom was sitting next to me. She had been with me through all of it. The good, the bad, and the ugly. She spoke with this woman’s adult daughter about how hard it was to have a family member go through something like this. The way it changed our lives and their lives. How we moved throughout our day-to-day lives.

Validation

I know this is going to sound strange, but it felt like meeting a unicorn in a way. Having never met someone with this disease to then randomly meet them and having a whole 20-minute conversation about everything revolving around this disease and how difficult it is, it was a lot to take in. I say this in the most positive way.

When I was going through it a couple of years ago, I often wondered if the feelings I had and the emotions I was experiencing were valid. Was I feeling too much? Was I being too dramatic about this? Speaking with another person who had gone through this disease validated those feelings in a way I wasn’t anticipating. Yes, I had every right to feel the way I felt.

I continue to think about that conversation we shared. What we both had gone through with being diagnosed with TED and the challenges that come along with this disease is life-changing. The way I experienced life changed through the lens of this disease without warning. It’s an unexpected shock to the system. Knowing there’s another person out there, many people in fact, who have felt this way too, I am forever grateful.

Do you have a thyroid eye disease (TED) story? Click the button below to share with our community!