Surrounded by clouds, a person walks through a doorway with a large question mark.

Questions I Had About TED a Year Into the Disease

Last updated: December 2022

Editor's Note:This is part three of a series. Read the first and second article from this series by clicking the following titles: Questions I Had About TED When I Was Initially Diagnosed (Part 1), and Questions I Had About TED After I Was Diagnosed (Part 2).

These questions came out of desperation. A year into my thyroid eye disease (TED) journey, I had not yet seen the light at the end of the tunnel. I was surrounded by the unknown of this disease, wondering how I was ever going to get out. If I was ever going to move on from TED. These are the questions that kept me up at night and the answers I was not sure I would ever know.

More questions I had about my thyroid eye disease

Will I need surgery for my eyelids and swelling?

The last visit I will have with my TED eye doctor, almost three years into my diagnosis, I will be told it’s my choice whether or not I want to have surgery. It’s not crucial for the well-being of my eyes or their appearance. My upper eyelids are slowly changing on their own. The change to my eyes is significant to me but not drastic enough that it is too noticeable by anyone else. I choose to not have surgery. I will not regret this decision.

Will my upper eyelids go back to the way they were pre-TED?

No. My right eyelid will begin to drop back down two and a half years after my diagnosis. It will take another two years for that eyelid to fully drop back down and will appear almost like it was pre-TED. My left eyelid will always be a year behind my right eyelid. Whatever my right eyelid goes through now, my left eye will experience a year from now. It’s a slow process but I am patient with my body and set no expectations.

Will the swelling around my eyes go away?

Yes. The swelling will improve over time. The discomfort will eventually fade. My eyes will feel as close to normal as I can remember. Though, because the swelling around my eyes was present for years, it will leave the skin around my eyes to continue to appear bulgy even after the swelling is no longer there. It’s like the extra skin a woman has after being pregnant for nine months. It’s just extra skin around my eyes that now exists from being pushed out for so long. It won’t be noticeable enough for me to obsess over or even be annoyed about. Of course, there are moments that I remember I have it and sigh. But I won’t feel the need to change the appearance of my eyes with surgery. I put on my eye cream, use my eye pillow, and get enough sleep when I can. I also think wearing glasses daily helps me not focus on how my eyes look now.

Will my vision improve?

Yes! With time, my vision will get better. After going on steroids to try to help my eye swelling, I will get a strong glasses prescription. Though over time, as my eyes improve, I will no longer need strong lenses and when I get new glasses, my lenses will be more like how they were before TED.

How long will it take for the disease to go away?

About three years for me. Though I will still have some very minor lingering symptoms almost four years after I was diagnosed. Two years in, the double vision will go away. The light sensitivity will slowly fade out of my life about two and a half years into my journey. Everything else will improve with time. The less I focus on it, the faster I will heal. This is a chapter in my life, not my full story.

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