How I Became an Advocate for Thyroid Eye Disease

Becoming a vocal advocate within the thyroid eye disease (TED) community was never something that I expected, nor frankly was it something that I initially wanted.

I have been an advocate within the celiac disease/gluten-free community for over a decade, and it has changed my life for the better in many unexpected ways. However, thyroid eye disease felt different. My experience was so deeply traumatic and personal, and my goal was probably similar to many other people’s - to get through surgeries, move on with my life, and never speak about it again. I hated this disease and wanted to get as far away from it as possible.

Finding my boundaries on social media

In general, I am a firm believer that as open as many patient advocates are, there should always be boundaries, and those boundaries can and should change over time. I cannot give all of my physical and emotional energy - I would have none left to navigate my own chronic illnesses. No one should feel obligated to share every moment of their life if that causes more trauma and negatively affects mental health. Advocacy can and should look different for everyone.

While I was not sure how much I wanted to personally talk about TED, I still sought some type of support and community. I struggled with being a part of facebook groups for individuals with TED. Close-up photos of eyes and even graphic images that others posted immediately hit my heart like a ton of bricks. I understood that group members were normally asking for help, but upon seeing photos of other people’s eyes I would immediately feel a flurry of emotions - deep sadness, anger towards the disease, and overwhelming fear. I left the groups, realizing that they were not for me. They simply were not what I needed at that stage in my journey.

So I turned to my own social media pages that focused on celiac disease. Many individuals with celiac disease also have thyroid-related conditions, so it was a relevant topic to discuss on this platform. I always try to be genuine on my page and decided that perhaps I would briefly discuss what was happening with TED, share a bit about my surgeries, and create a video or two. Perhaps I could help a few people feel less alone while also setting boundaries for my mental health - I could share as much or as little as I felt comfortable with, and posting on my personal page would minimize my risk of being unexpectedly triggered.

Advocating for thyroid eye disease

I quickly connected with friends who I had no idea were also diagnosed with Graves’ disease and/or TED. I received many nice comments from others in the TED community thanking me for my openness. In truth, these individuals helped me as much as I had hoped to help others.

Then I started receiving requests to write articles about my experience with TED and help create patient-focused resources. While I am not a spiritual person and do not believe that everything happens for a reason, didn’t it seem like arrows were pointing me in a direction? I decided to explore saying yes. My doctor warned me - I was still in the middle of treatment, and everything emotionally felt very raw. It was more than okay to say no to anything that might be too much.

In the end, I am very grateful to be involved in a supportive community such as thyroideyedisease.net. I appreciate the thoroughness of their resources for the community, and behind the scenes, everyone has been incredibly supportive, encourages healthy boundaries, and approaches sensitive topics in sensitive ways. I am very happy to have found a community that is in line with my needs.

My personal bits of advice for anyone who is considering getting more involved with health-related communities:

• Explore how you can share your personal stories in ways that you are comfortable with.
• Say no to things that might be harmful for you.
• It’s okay to not be an open book.
• Boundaries are healthy and should change as you change.
• Take breaks.
• Not every community or platform is right for everyone.
• Each person’s experiences and needs will always be different than someone else’s.

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