Moving Beyond Thyroid Eye Disease

Finally! I made it! After a six-year battle, I am now on the other side of thyroid eye disease (TED). I am looking forward to the New Year, 2023, with healthy, opened eyes!  Is anyone else feeling like they won the battle too? Speak up so we can share the hope with our TED peers who are still in the depths of the active phase.

Any of you who have read my past articles know I am a pro at commiserating, but I can just as actively celebrate my success at kicking TED's butt! I became acutely aware of this during my last post-op visit with my oculoplastic surgeon. He was comparing my eyes to a picture of them before the last three surgeries. I followed his gaze to the picture on his computer screen. I felt my breath catch as I looked at those bulging, bloodshot eyes with retracted eyelids. I could only say one word to him..."Scary"...and we both smiled. Those scary eyes staring back at me reminded me of how far I have come. I felt that catch in my breath again as I realized, "I made it! I am on "THE OTHER SIDE OF TED"!

Moving to the other side of thyroid eye disease: the inactive phase

What does that mean to be on the other side of TED? It means my days are no longer all about my eyes! It means I am no longer wondering if I will ever feel and look normal again.

My eyes have stayed consistently stable and the longer I am in this phase, the better I feel. I am also aware that once we get to this point, a small percentage of TED patients can go active again. I choose to embrace that statistic for myself. Because of the scar tissue in the orbit of my eyes, I still get mild but manageable headaches. I can embrace those battle scars knowing that I never get the daily, intense headaches like the past. I remember vividly the gritty dryness of my eyes that refused any relief from teardrops and gel-drops. The sand in my eyes feeling is gone and teardrops actually soothe the milder dryness that I experience. I still choose to wear sunglasses for protection from the sun and white lights because I will never take the health of my eyes for granted again.

My quality of life has improved now that I don't have to worry about blurry and double vision. With my improved vision, I no longer feel off balance as I walk and I no longer make multiple wrong turns when I drive. As I am getting my eyes back I am getting myself back.

Along with feeling normal, I look normal again. What an amazing gift my oculoplastic surgeon has given me by skillfully correcting my damaged eyes. I no longer avoid mirrors, cameras, FaceTime calls, or face-to-face conversations. Living in avoidance is stressful. What a relief it is to just "be" now.

Improvements and compliments

Let's talk more about face-to-face conversations because this is so important in our relationships and so difficult when our eyes are being actively damaged. There will be a time when you will be able to converse with friends and family and strangers as seamlessly as you had before thyroid eye disease. I remember preempting conversations with saying, "don't worry about my eyes, I am not staring at you. My eyelids are retracted, because of thyroid eye disease..." then valiantly moving on with the conversation. Without giving this simple explanation, I was aware of some people kindly averting their eyes from me and not asking the obvious question, "What's up with your eyes"? During a recent casual chat with a fellow shopper, this stranger interrupted me with, "You have such pretty eyes. Do people tell you that all the time?" She had no idea of the gift she just handed me. I could only say, "Thank you," as I felt that now familiar catch in my breath. To all of my TED peers, I want this for you too, and I want you to believe it is reachable.

Appreciation and encouragement

As the new year approaches, I say thank you to my family and friends who all stood by me the past six years and did not judge my ups and downs. Thank you to my endocrinologist who answered my many repetitive questions. Thank you to my skilled, TED specialist who, in his quiet way, guided me to the other side of thyroid eye disease and whom I will never regret trusting with my eyes. Thank you to my husband who understood how desperate and lost I felt at times and always reminded me I was still beautiful. He gave me courage when I felt defeated.

To all of my TED peers, there are brighter days ahead for you. I am here for you when your days feel dark and I am here to celebrate those brighter days when you, too, kick TED's butt!