Three Years Later - Navigating Thyroid Eye Disease After Surgery

My last surgery for thyroid eye disease (TED) was a little over three years ago. I’ve often said that surgery profoundly helped me and gave me so much of my life back. Orbital decompression surgeries essentially helped to create more room in my face for my eyes, and upper eyelid surgery corrected my eyelid retraction. As monumental as these surgeries were for my physical, mental and emotional health, I knew that I wouldn’t look exactly like I did before TED - closer to the old me, but not exactly.

Navigating symptoms after surgery

I want to be very clear - surgery changed everything for the better. But because my eyes are different now and the damage from TED has been done, I still navigate some symptoms, mostly dry eyes. I often joke that I should buy stocks in eye drops. On my end table you’ll find four different types of eye drops - preservative free drops for the day, gel drops for the night, a normal larger bottle of lubricating drops that I often use to flood my eyes when I wake up in the morning, and a prescription eye drop that I’m currently trying.

But my other symptoms - watery eyes, redness, along with the proptosis and eyelid retraction - are so much better. During my struggles with Graves’ disease and TED, my face shape had also changed and had gotten fuller. This combined with my drastic eye changes made my reflection totally unrecognizable. But now I see more of me in the mirror, and I feel more comfortable in my own skin. I feel like my body is working with me, not against me.

Experimenting with makeup

I still love doing my makeup in creative ways with sparkles and bright colors, but I’ve also become more relaxed about it. Before TED I wore makeup every day. During my active phase I used makeup tricks to help minimize the appearance of my symptoms, and I wouldn’t dare go anywhere without my eyeshadow in place. While I still prefer doing my makeup (especially for social gatherings), now I often skip it on workdays, prioritizing rest and other needs in the mornings. Do I like seeing my eyes in the mirror without makeup? Not particularly, but it’s no longer an emotionally painful experience.

Embracing the new me

Do I still mourn the loss of the old me? Yes. I do catch glimpses of myself in the mirror or see photos of myself from years ago, and a little voice reminds me about the changes to my eyes and the sadness that came with the trauma I experienced. If I could wave a magic wand, I would change everything and give myself a chance to grow older as the previous me. But these voices which were once loud in my head are quieter now. And when I do my makeup and fix my hair, I often smile at my reflection, allowing myself to enjoy feeling pretty because there were several years in which that feeling was lost.

Challenging moments after surgery

There have been more difficult moments. I was going through a particularly stressful week (my phone was stolen and I thought my beloved cat was dying), and I woke up, looked in the mirror, and saw one eyelid was resting much higher than the other. “Sh*t, the icing on top of the cake,” I thought. This unfortunately wasn’t my first scare post-surgeries. I booked the next available appointment with my ophthalmologist. Was it scar tissue tightening? An acute flare up? A reemergence of the active phase? We monitored it, and fortunately it resolved on its’ own. “Thanks doctor,” I said, “it’s always nice to see you, but I hope I don’t have to see you again for a very long time.”

So that’s me now in a nutshell - TED will never be fully gone, but things are much much better. And if you’re reading this, I wish much much better days for you, too.