Unexpected or Surprising Moments With Thyroid Eye Disease

It is likely that many of us have experienced a moment or 2 when someone says or does something about our health that takes us by surprise. When managing a rare condition like thyroid eye disease (TED), these comments or actions may occur at different times for various reasons.

Perhaps a person does not know how to respond to something that you are explaining, or does not know how to behave while you are going through a difficult time. It may come from a place of meaning well or wanting to avoid an uncomfortable moment. Or maybe they are trying to cheer you up! Regardless of the reason, these moments may cause many emotions from the person on the receiving end.

We asked our Health Leaders to share the most unexpected or surprising thing a family member or friend said or asked them about TED. Here are some of their responses.

Laughing with me about my double vision

"The most surprising thing a family member did for me when it came to my TED was laugh along with me when I said I was experiencing double vision. My double vision was very inconsistent and all over the place. Not everything would be double, nor would I experience double vision the same way every day. But when I did have double vision, it was mainly people and pets having four eyes. I remember experiencing it while watching television (TV) more than in real life, or words on a page would double.

Whenever I would watch TV and I would experience this, I would express to the person sitting next to me what I was seeing, and they would laugh. Then I would laugh too. It was either laughing or crying. Living with double vision for a few years for me was both absurd and bizarre. Like, this was what my life had become? I was not expecting this to happen, or did not see it coming (pun intended). So when it did, it was jarring.

My double vision was not serious to the point where everything I saw was doubled, most of the time anyway. Any moments when I did experience that kind of double vision, I have erased from my memory. However, I did have friends ask me about my double vision then get really confused when I mentioned the four eyes thing." –Kelly

Making awkward comments in response to my explanation about my eyes

"When I was going through the worst stage of TED and my eyes were distorted looking, I recall just wanting to hear that those in my circle of friends knew these were not my normal eyes. My normal eyes do not bulge with retracted eyelids. I also wanted to make them and myself feel more comfortable in social situations.

I realized because of the muscle damage, people thought I was staring at them with a surprised and startled look on my face. In my effort to make them and myself feel more comfortable, I would preempt our social gatherings and conversations by simply stating something like, 'I am not staring at you. I have a condition called thyroid eye disease that has done some damage to my eyes, causing retracted lids and bulging eyes.'

Most times this did enable all of us to feel more comfortable, and we could move beyond the obvious. Yet sometimes there were those awkward comments and reactions. The most ridiculous was, 'I don't see any difference.' SERIOUSLY! After more or less dismissing my retracted lids and bulging eyes, they would avert their gaze to anywhere but me. I guess that is when my action plan backfired on me.

Another surprising remark was, 'Oh, that just happens to our eyes as we age.' I do realize some people made this comment in their effort to make me feel less self-conscious, so I had to talk myself down from the annoyance I felt. Through my experience, I have learned that we all just want to be heard and understood. I try to be more empathetic to those struggling with different diseases." –Roxann

Unexpected or surprising moments in your thyroid eye disease journey

Have you experienced an unexpected or surprising moment with someone close to you in your TED journey? Did they say something unexpected, or did a look they gave you catch you off guard? How did you feel? How did you react? Share your story with the community by clicking the button below.