“The Other Side” of Thyroid Eye Disease

I suffered from thyroid eye disease for years, and there was little that I could do but wait for treatment. I knew for a long time that multiple surgeries were inevitable, and I woke up each day with one thing in mind - one day closer to surgery.

When will I be on "the other side" of thyroid eye disease?

I had seen anecdotes from others online - how surgery gave them their lives back, they finally saw themselves again, and they no longer had to think about their eyes. Was that even possible? Would I ever get to that place? I grasped onto those hopes, and they helped pull me through my worst moments.

It took nearly six months to get through and recover from three surgeries - two orbital decompression surgeries (one for each eye) and an upper eyelid surgery. Recovery was long, and even now tissue is still healing. Each day of recovery I analyzed my reflection, searching for signs of the old me through the swelling and bruising. Every once in a while my husband (who held my hand throughout this entire rollercoaster) would smile at me and say, “I can see you,” and that meant the world.

Mourning the loss of the old me, and getting to know the new me

I’m very open about my experiences in the online autoimmune disease community. Occasionally I receive messages asking, “How did you get over this?” or “How were you able to come to terms with the changes to your appearance?” The simple answer is - I haven’t. This experience has been heartbreaking and truly traumatizing. I was aware before going into my surgeries that things would be a lot better, but I wouldn’t look exactly like the me before my diagnosis, and that’s really difficult. This disease destroyed much of my sense of self. I continue to mourn the loss of the me I see in old photos - happy, unburdened by this trauma, expressive - I won’t see her again. I won’t see who she would eventually grow to be. And that’s not fair.

So now I’m working on getting to know the new me. I’m incredibly grateful for my wonderful surgeons, and I want to emphasize that, yes, things are much better. But I still have my difficult days. I have a lot of work to do to feel comfortable, accept that life is different, and help my heart heal.

I’ve also been very scared. Scientists know so little about this disease. What causes it to start and re-start? My doctor believes that my stable thyroid levels thanks to my thyroidectomy are helpful along with the fact that I’ve never smoked. Even so, will I be one of the unlucky ones who goes through the emotional and physical trauma of thyroid eye diesase and surgeries only to have to endure it all over again? If my symptoms resume will surgery even be an option again?

And I have to wonder - will I ever be on “the other side” of this? Does that even exist?

I truly don’t know. I can only take one step forward at a time and see where life leads me.