Ask the Advocates: What Made You Want to Be a TED Advocate?

You are your best advocate. You know your body and your condition better than anyone else. Of course, you likely have a team of doctors who help support you in understanding and treating your thyroid eye disease (TED). However, it can also be important to connect with others who are going through similar experiences.

We have a wonderful advocate team here on ThyroidEyeDisease.net! Our advocate team consists of people who not only have TED but are willing to share their experiences and stories as well as interact with others on our site and social media.

Have you ever thought about being a TED advocate? We asked our advocates, “What made you want to be an advocate for thyroid eye disease?” Here are their answers.

Reasons for becoming thyroid eye disease advocates

Kelly shared her reason:

“I was really isolated when dealing with TED. Facebook groups for people dealing with TED were overwhelming and more negative than positive. I realized people process their diagnoses differently. Seeing other people sharing their vulnerable and unfiltered experiences with TED didn’t make me feel hopeful, especially early on in the process.

I wish I'd had a source like this when I was first diagnosed. Reading the other advocates’ stories and talking with them has reminded me that I’m not alone. Writing about what I’ve gone through has allowed me to process this journey in ways I couldn’t years ago.”

Jill explained her motivation:

“I had always thought that no one understood what I was going through. Everyone I talked to didn't have thyroid eye disease, so they couldn't really understand. That was always really hard for me. It was nice that my friends and family wanted to listen, but they really didn't get it.

That's why I wanted to become an advocate. I wanted to be able to let people know that they aren't alone. I want them to be able to read my experience and realize they aren't the only one that had to go through something similar. It was helpful to me to be able to talk with people going through similar situations as me, and to be able to read an experience that is similar to mine. It truly has made me feel less alone, and I hope it makes others feel less alone too.”

Jessica described how she became an advocate:

"To be honest, it was something that I fell into accidentally. As an 11+ year celiac disease advocate, I’m no stranger to patient advocacy. However, thyroid eye disease was an incredibly personal and traumatic experience. I believe my original plan was similar to a lot of other patients’ – just get through treatment, move on, and never talk about it again. But while I was anxiously waiting for my first surgery, I decided to create a makeup tutorial for TED. It had techniques that helped make some of my physical symptoms look less severe, tips for navigating watery eyes, and general things that helped me feel more like myself.

I received a lot of positive feedback and notes of gratitude. When I posted about my general experiences on Instagram, several people messaged me, thanked me for being so open, and said that they didn’t see many people discussing this disease publicly. Then the team at ThyroidEyeDisease.net reached out to me to chat about their patient advocacy program. While I don’t believe that everything happens for a reason, things just seemed to be coming together in a specific way. So I went with the flow.

I’m happy to be creating resources and articles that I wish had been available early on in my journey. Hopefully, the work I’m doing will help others feel less alone."

Have you thought about being an advocate for TED?

Here at ThyroidEyeDisease.net, we want to bring awareness to thyroid eye disease through articles and interactions that are educational and relatable. Hearing about another person’s story may help you feel less alone in your journey. Sharing your own story may help you connect with others who understand what you are going through.

To learn more about joining our team as an advocate, please read this article. If you are interested, fill out an application!

If you want to share your TED story and connect with others without becoming an advocate, please click here. We are excited to hear from you!