What I’m Proud Of - Graves’ Disease, Thyroid Eye Disease, and Singing

The same question has been posed to me several times in interviews and chats with other rare disease advocates - "What are you most proud of?" And I never knew how to answer that question. Proud? That word feels so complicated. I had been so focused on just getting by - I guess that’s something? And I’m very glad that through my advocacy I could help others feel a little less alone, but proud is not quite the right word to describe that feeling.

And then I felt it. Some back story -

The risk of vocal damage during surgery

I’m a singer. I love singing with every fiber of my being. And I was terrified by the idea that this was something that could be taken away from me. After not responding to medication well and another option being taken off the table due to thyroid eye disease, my only option to treat my out-of-control Graves’ disease was a thyroidectomy. I wrestled with this decision for months because the nerves that control the vocal cords are very close to the thyroid, and about 1% of people who undergo a thyroidectomy have permanent vocal damage. Sure 1% - but what if that was me?

A long road to recovery

Surgery recovery, and speech therapy

I eventually found a surgeon who specialized in vocal preservation during thyroid surgery, and long story short - I left the operating room, and the nerves that control my vocal cords were happy and healthy. However, my voice was still very raw afterward, and I had to go to months of speech therapy with a specialist who worked specifically with singers and performers. And despite all of this, it still took a long time for my voice to fully return, especially my lowest notes. For many months I thought I had lost them for good.

After my thyroidectomy, I had four surgeries to treat thyroid eye disease. Besides the normal recovery process, my voice had to recover after each surgery. Between tubes in my throat, recovery complications, and just the amount of time I needed to spend focusing on my recovery - I felt like I was constantly moving backward, then forward, then backward, then forward again.

Adjusting to a new normal

And then there were things about my body that were just different. Something that had been in my throat was no longer there. I also developed a sinus issue after one of my surgeries. I’ve had many follow-ups and while things technically looked fine, the space in part of my sinuses felt different. It may be in part because a slightly deviated septum was corrected out of necessity during the surgery (so yes, the space would be slightly different), but it felt like I had a lot of congestion far back in my sinus. This affected my perception, especially as it related to resonance and airflow when singing.

I was frustrated. There were a lot of hurdles while I was practicing that made things difficult. And sure I could sing, but even my favorite songs felt like a lot more energy and effort than they used to. Then I had an emotional conversation with my voice teacher. My assignment was to spend time getting very, very intimate with my voice and how things are now - not how they used to be.

Putting in hard work

So I did. I spent months by myself working very technically, exploring different placements and sounds (also with my last surgery/recovery and an awful cold mixed into the timeline). All of the things that were different - I had to learn how to work with them, not around them.

Some days were harder, and some days had more celebrations, but things were getting better. My lowest notes returned, relaxed and full. Belting my favorite songs was now virtually effortless. My voice felt open, free, and much more expressive.

I scheduled my first voice lesson in a long time and asked my teacher if they would indulge me - could I sing a few songs for them so they could hear the difference? Cue the music -

It was a great day. I left that lesson feeling positive and ready to take on the next challenge.

I found what I am proud of through Graves' disease, thyroid eye disease, and singing

I’m now a better singer than I was before. I’m exceedingly grateful to my voice teacher - both their teachings and support throughout this difficult time in my life have made me the singer I am today.

And I realized that I finally found the answer to that question. I’m proud of myself. I’m really, really proud of myself for getting here.

Do you have a thyroid eye disease (TED) story? What are you most proud of from your journey? Click the button below to share with our community!