Positive Interactions with Thyroid Eye Disease

I find that it is unfortunately all too easy to write about the negative or hurtful comments I have received in relationship to thyroid eye disease (TED). In fact I have written 2 articles about what NOT to say to someone with TED and another about unsolicited advice. But I would like to open up space for the positive moments and comments that meant a lot to me.

Thankful for positive moments with thyroid eye disease

So here are just a few specific thank yous -

To my yoga student

During the early days of my journey with TED, I often felt like others dismissed my symptoms and concerns often saying, “I can’t see a difference.”

Then one of my long-time yoga students came back to class after a few months of being out of town. After everyone had left she cautiously approached me and gently said, "Jessica, I really don’t want to intrude, but before I retired I was an eye surgeon." I welcomed the conversation and she continued "It’s been a while since I’ve come to class, and I’m a little worried about you. Could I ask if you’ve had your thyroid tested recently?" Thank you for seeing me, caring, and validating my experience.

To my inclusive friends

At least twice when a camera was pulled out for a group photo different friends suggested we all do a fun sunglasses photo together. I know they had read my articles/posts about how sunglasses helped me feel more comfortable when taking pictures. Thank you for being mindful of my feelings, not drawing attention to me specifically, and making these moments easy.

My mom

Before I was diagnosed she was the one who first was able to pinpoint that my eyes were changing. She immediately took it upon herself to research and consider different makeup techniques that might help me mask my symptoms. Even today with five surgeries under my belt, she periodically sends me new ideas as I continue to explore how I want to express myself.

Thank you for all of your ongoing support in so many ways, and also recognizing something that would help me so much.

To my friends who sent surprise flowers before my surgery

I did not tell many people about my surgeries in advance because I was so afraid of them getting cancelled. And it was a very real fear - I had 5 surgeries during the COVID-19 pandemic. The first was cancelled (and rescheduled months later), and I had to painfully explain to everyone who texted me well wishes that it was no longer happening. I also had to isolate a lot before each surgery - if I caught COVID, I would be looking at another cancellation and multi-month delay. Navigating treatment during the pandemic felt lonely and isolating, but the surprise knock at my door and burst of purple flowers made me feel so much less alone.

To anyone who has commented on my videos/articles

I have been very open about how I stumbled into my current role as a vocal advocate for TED. It was never my plan to write dozens of articles and give speaking engagements about this condition - I just wanted to get through treatment and move on with my life the best I could.

However, the very first piece I put on the internet years ago still somehow finds people. "I’m crying as I watch this...thank you for your vulnerability in sharing this," "You make me feel like I’m not alone," "I didn’t have a lot of hope that makeup would help, but I gave it a try...I actually feel pretty for the first time in a long time. Thank you."

Thank you for encouraging me to do more. Being a vocal advocate for TED has changed my life in many ways, and I’m so glad that what I do helps people.

Share your positive moments with the TED community!

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