An Open Thank You Letter to My Thyroid Eye Disease Specialist

To my thyroid eye disease specialist,

When we last spoke we were having our final post-op appointment before you went on sabbatical for several months. This appointment marked the end (or at least what I hope is the end) of a very long journey of medical treatment for thyroid eye disease (TED). Years of physical and emotional pain and 4 surgeries later - here we are.

You have helped me through so much, how can I possibly express everything you did for me and how much it meant? So what came out of my mouth was, “Thank you. This has been so hard, and you made my life so much better.”

Really, I think you saved me in many ways. When my medical treatment was significantly and continuously delayed due to the COVID-19 pandemic, I felt lost. There had finally been a light at the end of the tunnel, some sort of relief was waiting for me, but those delays pulled the rug out from under me, and when I looked up that light had been extinguished. The darkness was all-encompassing, but each appointment with you on my calendar was something I could hold onto. Each was one step forward as I walked through the dark, holding my breath and hoping the light would appear again.

So thank you.

Thank you for your calming presence.

Thank you for your patience.

Thank you for anticipating my long list of questions at the end of every appointment.

Thank you for taking time with me so I never felt rushed.

Thank you for looking me in the eyes when we spoke.

Thank you for caring about how patients see themselves.

Thank you for encouraging me.

Thank you for helping me find a bit of myself again.

Thank you for giving me my life back.

I always felt heard. I always felt seen. I always felt understood.

While I have a lot of emotional work to do as I’m getting acquainted with this new version of myself (both inside and out, I am not the same person I was before thyroid eye disease), I feel very fortunate to be in this position. With limited access to TED specialists, resources, and health care, I know that not everyone is able to get the treatment they desperately need for this condition. That’s not fair - nothing about this condition is fair - and I’m going to continue doing my best to help spread awareness and create change.

As nervous as I was to hear you were going on sabbatical (thank you for recommending your wonderful colleague for me to see while you’re away!), I’m so glad that you’re traveling the world and doing nonprofit work to help create surgical resources for underserved communities that need more support.

For my own sake, I hope that I’ll never need to have frequent appointments with you again. Hopefully, I’ll see you periodically to monitor TED and I’ll begin to truly move on with my life. I know that I will always be scared that my symptoms could someday resume and push me into a new active phase, but knowing you’re there in case I need help is comforting.

So thank you. This has been so hard, and you made my life so much better.

Jessica