The Emotional Energy of Thyroid Eye Disease

Sometimes I think about how much easier my life would be without thyroid eye disease.

My eyes would often wake me up in the middle of the night. The eyelid retraction and swelling behind the eyes meant that my eyes could not close all the way. I relied on a heavy amount of eye drops, but that did not stop them from becoming painfully dry. I would eventually wake up in the morning, exhausted and having forgotten what a good night’s sleep felt like.

As I made my way to the bathroom I would avoid the mirror. I would wonder how swollen everything would look on a given morning, how red and irritated the whites of my eyes would be. Perhaps I’d steal a glance, lying to myself and saying that it was someone else in the glass I was looking at. Should I attempt makeup that morning? Perhaps everything except the eyeliner and mascara. Though makeup helped me feel a little more like myself, my dry eyes would overproduce tears, especially in the morning, smudging my makeup into a watery mess of black.

I would make my way to work, continuously dabbing the watery excess in the corners of my eyes that would threaten to destroy the little makeup I was able to wear. I would hope that when I got to work my colleagues and students would not notice how embarrassingly red my eyes were.

Physical and emotional energy I use with thyroid eye disease

Throughout the day I would be constantly triggered - Who is that in my reflection? No, I do not want to be in a photo, I will just make a quick exit to avoid the conversation. Oh no, a photo memory on my phone from ten years ago - I do not even remember that person. I used a lot of energy to avoid these situations.

I endured extra complications as an actor and singer. I no longer looked like my headshots, and the thought of paying for a professional photoshoot when I was constantly triggered by photos was nauseating. I was also afraid that casting directors would react negatively to the disarming stare that thyroid eye disease created.

I had been told my whole life that I was a very expressive performer, particularly when it came to my eyes. But when thyroid eye disease took over my life, I began using a lot of energy to constantly relax my eyelids. Though I felt like it helped me look less alarming, I lost something very important. I did not feel like I could express myself. I could hear my speaking voice becoming flatter and more monotone as I relaxed the muscles of my face. Singing (especially the quirky musical theatre songs I love) requires a lot of animation and activation of the muscles around the face, and I just could not reach that level of activation without looking...frankly - scary.

My voice teacher often used mirrors to help students pinpoint and correct tension and odd habits. This was very difficult for me. I would face the mirror but look anywhere else. I did not realize just how triggering it would be to watch myself sing, and one day I burst into tears in the middle of a lesson.

My hope to find myself again

Things have gotten a little better after orbital decompression surgery, and I am hoping they will improve more after lid surgery. I was told that I will not look exactly like how I did before, but things would be a lot better. As of now, I am triggered less frequently. Makeup is easier. I am actively practicing how to engage various muscles of my face again. The emotional pain is not gone. I still use a ton of eye drops. Mirrors are still difficult, and I have not even attempted photos yet. But every once in a while I catch a glimpse of the old me, and I can only hold onto hope that I will find myself again.