Explaining Thyroid Eye Disease to Others
Thyroid eye disease (TED) is a rare condition. This community is for people living with TED and caregivers or friends and family of people living with this condition. Our goal is to be a safe online community for people to connect, learn, and be validated about the different aspects of living with this condition.
People may sometimes ask you in-person to talk about your condition, or you may want to explain what TED is to someone. This can be complex because it may be difficult to know where to start or what to share. While people within the community may have similar experiences or symptoms, the way each person experiences their condition could be different. Therefore, the way you explain your condition to someone may also be different.
We asked our Health Leader team, "How do you explain thyroid eye disease to people who have never heard of it before?" We hope their answers may help others share what they feel comfortable sharing about TED.
Explaining thyroid eye disease to others
Sharing about my symptoms and difficult moments
"I try to list examples of the symptoms I was experiencing and stories about moments I’ve had because of this disease to help people make sense of what I was experiencing. When I would tell people I have thyroid eye disease and one of the symptoms is double vision, I think they envisioned something more extreme than what I was going through.
I recently saw a painting of a cat with 4 eyes, with 2 eyes floating above the other 2. It’s exactly how my double vision was, and it was quite trippy for my brain to register. I sent it to a few close friends and said, 'For me, this is what it was like having TED.'
I talked about running into corners in spaces I wasn’t familiar with because of what this disease did to my depth perception. I had bruises all over my knees and shins because of it. I would show them my eyes and how puffy they were and share pictures of how I looked before this disease.
I shared my day-to-day struggles more than how it impacted me overall, because those are the kinds of things that have stuck with me and seem to resonate with most with people. I haven’t had TED for a few years now, but those difficult moments are always the touchstones I share when I explain to someone what it’s like to have this disease." – Kelly
Highlighting the emotional toll of TED
"Explaining thyroid eye disease can be tricky, especially because my personal treatment timeline was complicated due to the COVID-19 pandemic. Also, my mental health deeply suffered during the worst years of my experience with TED. It was all so new, and I didn’t have any emotional distance from the disease. Repeatedly going into in-depth discussions wasn’t the healthiest thing for me. I will always choose to educate when I have the emotional energy, but I think it’s important to remember that we as advocates are not obligated to share every detail of our medical condition with every person we meet on the street. We have to take care of our mental and emotional health too, so depending on the person or situation I would give different answers.
'Wow, your eyes are so big and beautiful!' I would sometimes randomly hear from new acquaintances. 'Thanks!' I would respond and quickly change the subject. Any comments about my appearance (even positive ones) brought up a lot of emotions. They were often seeing the makeup tricks and other things I did to help mask some of my worst symptoms, and they weren’t seeing the pain and emotional suffering. But I didn’t need to get into an emotional heart-to-heart about my medical condition with a person I just met.
When casual acquaintances learned that I would be having surgery I might say, 'I have an eye condition called thyroid eye disease. It’s autoimmune related, and I need to have several surgeries.' Often someone would respond, 'Oh yes, one of my parents has (insert vision problem),' trying to find something in their personal lives to relate it to, not realizing how different an autoimmune condition is.
However, when closer friends asked, I often chose to help educate and discuss it more in-depth. 'Thyroid eye disease is my third autoimmune condition. It affects the muscles behind the eyes, and it’s really emotional because it has significantly changed my appearance. Not everyone notices right away because I do a lot of things to try to mask my symptoms, but normal things like taking a photo are really difficult. I need to have multiple surgeries to correct the damage, and it’s a really long road.' I think it’s important to highlight the emotional side of TED. Sure, I could talk about the optic nerve, but I find that people understand emotions on a different level than they do clinical terms. Depending on how I was feeling, I may have a much longer discussion about my symptoms, surgeries, etc." – Jessica
Respecting comfort levels with different people
"I personally found it difficult to explain thyroid eye disease to friends. My family, who saw me through the beginning of TED and watched its progression with the forever-changing symptoms, understood what thyroid eye disease was. They were concerned enough to research it themselves so they could support me. They knew from watching the TED progression that it was a serious condition and truly wanted to understand.
It was more difficult to explain it to friends who I didn't see regularly. When I wanted to explain why my eyes looked so outrageously red, swollen, and bulging, I cringed when they would shrug it off as 'It's just signs of aging; it happens to all of us.' Another response that I found irritating was, 'I don't see any difference,' as if retracted eyelids were normal.
There came a time when I realized that many people are not comfortable discussing health issues. By saying they didn't see the difference in my eyes or stating that the changes are just part of aging, it was an effort to protect themselves from the discussion and me from having to address it. I had to respect their comfort level and learn to accept that not everyone needs an explanation. This experience has made me more empathetic to friends who do struggle with health issues. I hope I never brushed them off. Now, I see the relief they feel when I ask about what they are going through and truly want to understand." – Roxann
How would you explain your journey with thyroid eye disease to others?
Our Health Leaders shared their specific approaches to explaining TED to people who have never heard of it before. These approaches may not be an exact fit for how you would want to explain TED but could give you some options if that conversation ever comes up! Have you had to explain TED before? How did you approach the subject? How was your explanation received? How did you feel after the discussion?
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