An eyeball is holding a letter.

My Letter to Thyroid Eye Disease (TED)

Last updated: November 2022

Dear Thyroid Eye Disease (TED),

You crept into my life in 2017, no introduction, no common friend, no invite...but there you were. On and off throughout my days you would interrupt me by injecting pressure behind my eyes. I tolerated you like an annoying friend. I assumed you would leave soon, so I went about my business but you started to insert yourself in every activity I did.

Because of your unwanted presence and all the pressure you put on me to hang out together, my eyes started to swell and tear. Do you hear how not welcomed you were/are in my life? I would do anything to eliminate you from my daily guest list, so I started enlisting the help of doctors; many doctors. I thought for sure they would make you go away. You went to those appointments with me and I thought they would recognize your presence. When they did not, you would sit in the opposite chair from me and cross your arms threateningly, like the bully you are! When one doctor suggested I see a therapist, I saw you laugh and give me a sarcastic wink. You held me captive and nobody recognized it. You were always there even when I deliberately ignored you. I started popping Tylenol to relieve the pain in my eyes and you reveled in your power over me! But after two years of our secret relationship, even the most inattentive doctor could see the drastic changes in my eyes and sent me to a TED specialist!

I was so relieved when he diagnosed YOU as thyroid eye disease. I thought that was the end of our toxic relationship. I was going to take some magic pill and you would disappear. When he told me I had to wait it out until you were done doing your damage, you dug your claws in deeper. You ruled the relationship by making my eyes bulge and retracting my eyelids. You seemed to think you had a free pass with my eyes. I heard you laughing when driving with me and I would continuously make the wrong turns because of the crazy blurred vision you gave me. And how emboldened you felt when I saw two of everything.

Am I supposed to thank you for all of the special sunglasses and sun hats I got because of you? What about all the bottles of teardrops that only rinsed you away for almost a minute? After three years you took a rest and I could finally get the Tepezza treatment. While you rested, I did not. I fought the side effects of the infusions but was relieved to do it without you hanging around. Did you get nervous when I had my surgeries and recovered with somewhat normal-looking eyes?

I acknowledge I thought being 'on the other side of TED' meant you would go away. Imagine my despair when I found out you are FOREVER! I feel you lurking in the anxious part of my mind. I see you giving a little wave and nod as I search for my sunglasses. I hear your satisfied snort when I purchase yet another bottle of GEL eye drops.

But guess what...I have decided to embrace you and I say that with some resistance. You know that saying,"keep your enemies close"? I am not doing it for you. I am doing it to warn everyone else diagnosed with you, TED. I am not going to leave them alone with you. You see, we are TED peers. We have long discussions about you and not a single one of us like you. We are a community that helps each other find doctors and share what treatments worked for us. We acknowledge the pain and despair each of us feels because of the damage you have done. We pick each other up and choose to live a quality life despite you. We are taking the power away from you, TED. If my dreams come true, one day there will be a treatment that blocks you from the very first symptom.

How do I close this letter...sincerely...ugh! Get lost!
-Roxann

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