Thyroid Eye Disease - Talking About It Versus Silence

I generally respond to stress in two different ways:

1. I talk about what is bothering me with several people. Getting these thoughts, feelings, and frustrations off my chest and receiving validation from others is comforting.
2. I stay silent.

Trouble talking about thyroid eye disease

Some things are easier to talk about than others

I will chat about work stress, politics, and what wild thing recently happened in the autoimmune disease community that I need to advocate about. However, when it comes to exceptionally personal and serious components about my health, if I am hurting, I tend to shrink away.

While I am not always an extrovert, I do believe that some people do not expect the latter from me. I am very open about my experiences with autoimmune diseases - both the ups and downs. Nothing is TMI (too much information) - bodily functions, digestive trouble, and bowel movements - are all regular topics of conversation in my corner of the chronic illness community. Also, as part of my advocacy work I have publicly recounted several instances of sexism in medicine, especially surrounding issues like yeast infections and UTIs.

But I have had many moments that were so painfully private. I retreated into the bathroom and cried when my long-awaited thyroidectomy was canceled due to the COVID-19 pandemic. (I of course understood the complexity of the situation, but that alone could not ease my own physical and emotional suffering - it was a difficult time for anyone trying to receive medical care.) When I got the call that Tepezza was pausing their manufacturing shortly after I started treatment (also due to the pandemic) I internalized that emotional pain and went about my day. “I’m just used to bad things happening to me,” I said calmly to my concerned husband.

Talking about certain things with certain people

I tried to connect with mental health professionals but could not quite find the right fit. Drawing and imagination-based exercises were not quite my thing, and though I was told “your feelings are valid” I already knew that. The thing that helped my mental health the most was when I was finally able to get orbital decompression surgery. I still hope to someday find a therapist who specializes in chronic illnesses like thyroid eye disease (TED).

With friends, I wanted to forget about thyroid eye disease. I wanted an escape from the pain, especially when many of us felt very isolated because of the pandemic. I did not want to talk about how I was struggling because that was not what I needed from my friends. I needed a break.

It can also be very difficult to talk about because, gosh, how does anyone know how to react when a friend discloses painful information about a rare autoimmune condition that hardly anyone has heard of? Inevitably a response would include “I’m sure everything will be fine!” or “You’re never given more than you can handle,” and none of that was what I needed to hear. Talking about it, navigating responses, and educating others about the condition was a lot of emotional energy, especially when I had so little to spare.

Many of my friends similarly did not understand why I kept my surgery dates a secret. “We want to know because we care! We want to wish you well!” But when my first surgery was postponed, it was heartbreaking to reply to every good luck text the night before the original date and explain that it was canceled and who knows how many months I would have to wait to get back on the operating room schedule. I had a total of four surgeries during the pandemic, and I was terrified each time that something would go wrong and it would not happen. So I only disclosed dates to my family and necessary employers.

Talking about TED is not always easy

Every day with TED has been difficult. Perhaps to people on the outside, it seems like I have gotten used to things because I do not talk about it much, but the truth is that I have never gotten used to it. I feel like I am always in some state of adjustment, and I see the damage from TED in my face every time I look in the mirror. I’m still always scared that symptoms will resume.

I just cannot bare to talk about it all the time. I cannot let my condition steal away even more emotional energy than it already has.

I think it’s important to remember that pain looks like a lot of different things, and people express themselves in different ways to navigate that pain. Sometimes we need more space. I think it’s important for patient advocates to remember that as much as we try to be an open book, it’s okay to keep some moments to ourselves and off of social media. Sometimes it’s easier to talk about things when there’s a little more emotional distance. Sometimes it’s necessary to seek out professional help.

So if you’re having trouble talking about TED, I see you. Not everything is easy to talk about.

If you do want to talk about thyroid eye disease with other community members you can share your story or a question with the community by clicking the button below. If you are visiting this community to get support without talking about your journey, we welcome and support you, too!