How TED Changed My Eyes
Last updated: November 2022
My eyes changed over one summer. It was gradual in the moment but obvious in pictures. I did not notice a difference until fall and even then I was told by peers it was what happens when you age. This does not happen when you age, it happens when you are unaware you have a rare disease.
Thyroid eye disease changed my eyes
The swelling expanded around my under eyes first. Why were my eyes suddenly puffy? I would trace under my eyes with my finger as if that could tell me what was going on with my body. Over time, the swelling doubled in size piling on top of itself all around my eyes. It looked like two giant pillows resting below my eyes. I would look in mirrors and wonder who the stranger was with purple bags under her eyes. Eye cream helped a little but could not mask the clear evidence that I was going through it.
The bulginess and upper eyelid retraction came along with the onset of double vision. It felt like in one day, the eyes I knew had vanished and in their place were alien eyes, sensitive to everything and always irritated. I would be crying without any emotions at random moments throughout the day. And all I could do was wait, wait for the moment to pass, for the tears to subside.
The whites of my eyes turned red and became like spiderwebs around my eyes. Months into this disease, the side of my right eye turned purple and looked like glass like something had broken through the surface of my eye and was cracking it open. My thyroid eye disease (TED) doctor informed me it was a vein in the eye that got over a muscle caused by the swelling. He told me not to worry about it, and it should improve in time.
Waiting, and healing
At the peak of my thyroid eye disease journey, I was so uncomfortable and overwhelmed by how much my eyes had changed and how much that change impacted my life, that all I could do was wait. Steroids did not help me and in fact, only made things worse. Any drugs for TED that are available now were still in the clinical trial phase when I was experiencing all of my TED symptoms at once.
The journey to healing is slow. I wish I could tell you one day I woke up and it was all better, my eyes returned to how I saw them before. But alas, I cannot. The days were slow and the pain of it all was at times unbearable. It took three years of having this disease to recognize my old eyes in my new alien ones.
My doctor was right. Everything improved with time. The glass has healed and turned back into a regular vein in my eye. The whites of my eyes are now white. One of the upper eyelids has completely come into place while the other is still a little raised but not noticeable enough to worry about. The swelling has lessened to a point where it is not obvious. My eyes will never be how they used to be but they are not like how they were and for that, I am grateful.
What in your life has TED impacted? (Select all that apply)