PHILADELPHIA — August 25, 2022 — People living with thyroid eye disease experience judgment from others based on their visible symptoms, anxiety and a negative impact on their self-esteem, confidence and mental health, according to a recent survey conducted by Health Union, the leader in social health. The inaugural Thyroid Eye Disease In America survey illuminates the perspectives and experiences of people living with thyroid eye disease.

These findings also support and fuel content and engagement for the recent launch of ThyroidEyeDisease.net, one of Health Union’s 40 condition-specific online health communities. 

Thyroid eye disease is a rare condition – estimated to impact 16 per 100,000 women and 2.9 per 100,000 men, according to academic research – in which the eye muscles, eyelids, tear glands and fat tissues behind the eye become inflamed. The condition typically develops in people with an overactive thyroid and is sometimes referred to as Graves’ eye disease or Graves’ orbitopathy. Thyroid eye disease commonly leads to bulging eyes, redness of the eyes and eyelid swelling, but the condition can also occasionally result in pain, loss of vision and corneal ulcerations.

A significant number of Thyroid Eye Disease In America survey respondents identified themselves as having symptoms that are visible to others. Specifically, 87% have experienced bulging eyes, nearly three-fourths have experienced bags under their eyes, two-thirds have had redness on their lids or eyes, more than six in 10 have experienced inflammation and swelling in their eye tissues and nearly half have had misaligned eyes.

Potentially related, half of respondents said they feel judged by others based on how their eyes look. In fact, nearly a fifth of respondents said people have assumed they are hungover due to their thyroid eye disease symptoms. Multiple respondents noted receiving, as one individual said, “comments and strange looks”; some examples from respondents included:

• “People stood up at family parties and mimicked bulging their eyes out to look like me. Of course, the ‘you look like a deer caught in the headlights’ comments were always not fun too.”
• “People assume that I am intoxicated or sleep deprived. Or that I may even have a mental health condition…Biggest thing is people don’t understand that sometimes I cannot focus and assume I am faking it.”
• “I have to wear glasses to see so that made the bulging even more noticeable. I would look in the mirror and feel a panic attack coming and start to cry.”

These visible symptoms and resulting experiences and perceptions likely contribute to a negative impact on quality of life for people living with thyroid eye disease. Only 14% of survey respondents agreed that they are satisfied with their current quality of life.

Specifically, 54% of respondents said thyroid eye disease brings added anxiety to their daily lives. More than six in 10 respondents said their condition has had a negative impact on their self-esteem or self-image, 53% said it has negatively impacted their overall confidence and 44% cited a negative impact on mental health.

Moreover, 42% of respondents said their condition has negatively affected their social life or relationship with their friends, and three in 10 said their thyroid eye disease has negatively impacted their family relationships. Additionally, 56% say their friends or family don’t understand the realities of living with thyroid eye disease.