Where I Find Support for Thyroid Eye Disease

Thyroid eye disease (TED) often feels very lonely. There is so much sadness and pain surrounding this disease, and it is hard for others to truly understand what individuals with TED endure on a daily basis.

Early on, I struggled to find a sense of community. I joined a few Facebook groups towards the beginning of my TED journey. While it was nice to connect with others in the community, I found that online groups simply were not what I needed at that time. I found that photos, particularly close-ups of eyes, were incredibly triggering for me. I would be having a fine day, open Facebook to see what my friends were up to, and at the top of my newsfeed would be a photo that immediately sent my mental health spiraling. It was not the person posting’s fault (they were likely asking for help or opinions), it was simply that the platform did not help me find a sense of boundaries. So I unfollowed the groups, knowing I could always go back and try again.

I knew that my friends supported me, but again, it is hard for people to truly grasp how emotional TED is. What is it like to not recognize yourself in the mirror? I could see the confusion on their faces when I showed up to the pool wearing makeup (my makeup tricks helped to mask some of my TED symptoms) or when I made excuses to not be in group photos (I hated how I looked, and it was easier to duck out of photos than to ask that a photo be taken down from social media later). Many didn’t understand how comments like “I don’t see a difference,” or “We’re your friends, we don’t care what you look like!” were not helpful.

As I navigated what would best help me personally, I found different types of support from different people.

Where I found support in my thyroid eye disease journey

Friends

I did seek out a different kind of support. So much of my day-to-day life revolves around TED and the emotional burden of this disease. But I’m so much more than my diagnosis. The deep emotional impact of thyroid eye disease is so difficult to explain, and my complicated journey has been ongoing for years. When I am with my friends, my traumatic rare disease is the last thing I want to talk about. I want to have fun, laugh, and have something that resembles “normal” life. Supporting someone does not have to be long, tearful conversations. Sometimes it is helping a friend find an escape.

Family

I rely on my family to tell me the truth from an outside point of view. I have scrutinized my reflection in the mirror for years, and I have analyzed pictures throughout various stages of thyroid eye disease. There have been so many changes, it’s dizzying to think about. Recently, I had a concern but didn’t know if the person who I saw in the mirror was the post-surgery me I’m getting used to, or if I was seeing a problem. Do you ever write the same word over and over again, until you become unsure that it’s even a word? It’s a similar kind of feeling. I periodically have check-ins with family members to ask if they notice a difference in my visible symptoms.

Doctors

I am very fortunate to have an incredible ophthalmologist who performed my surgeries for thyroid eye disease. I am so grateful for his patience, the time he spends with me going over concerns, his understanding of the emotional impacts of this disease, and the calming nature of his voice. His empathy and wealth of knowledge about thyroid eye disease make me feel like I am in good hands.

The online celiac disease community

Long before Graves’ disease and thyroid eye disease, I was diagnosed with celiac disease. I am very active as an advocate in the online celiac/gluten-free community. Throughout my journey, I have connected with several people who also have celiac and Graves’/TED. Also, my friends in the community without any thyroid-related issues have been so kind. Though they cannot relate to TED specifically, they know what it is like to have an often invisible and chronic disease that others do not understand. We could talk about things from a broader point of view without getting into pictures and traumatic details.

Thyroideyedisease.net

(They do not know I’m writing this!) When the folks at thyroideyedisease.net initially reached out to me to write articles for this site, I had a good feeling, but I didn’t know just how wonderful, thoughtful and empathetic every one of my team members would be. From my absence, while I was having surgeries for TED, to every article I’ve submitted, the folks behind this site approach each interaction with an incredible amount of mindfulness, respect, and kindness. It’s simply a really wonderful place to be, and if you’re reading this I’m so happy to connect with you here!

Where do you find support in your TED journey?

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