What Would You Title Your Documentary About Living with Thyroid Eye Disease?

We recently conducted the Inaugural Thyroid Eye Disease (TED) In America survey to better understand the daily experiences of people who live with this condition.

The survey asked the optional question, “Imagine you were going to make a Netflix documentary about living with TED. What do you think a good title for that documentary would be? Why?” The responses highlight the physical and mental challenges of living with TED.

Some documentary titles spoke to physical symptoms of thyroid eye disease

TED is an autoimmune disorder, and its symptoms are an abnormal immune response to tissues and muscles around the eye. Most TED symptoms result from inflammation and swelling of tissue near the eye. Some of the most common TED symptoms are:^1,2

• Dry or wet eyes
• Red eyes
• Puffy eyelids
• Double vision
• Itchy or gritty eyes
• Tight muscles around the eyes that reveal more of the whites in the eyes

Many of the survey respondents' proposed documentary titles used the physical symptoms of TED in creative ways:

• “Double Trouble”
• “Don’t Forget Your Sunglasses”
• “Battle of the Bulge”
• “Bug Eyed”
• “Crying Eyes”
• “Double Vision”
• “Eyes Wide Open”
• “Guppy: A True Story”
• “Jeepers Creepers, Where’d You Get Those Peepers?”
• “My, What Big Eyes You Have, Grandma!”
• “That’s Not Normal”
• “The Girl With the Serpent Eyes”

Some titles stemmed from the emotional impact

Of the survey respondents, 44 percent of respondents felt that TED had worsened their mental health significantly. Anxiety often comes with TED. The survey showed that 54 percent of respondents have experienced anxiety linked to TED.

The thyroid hormonal imbalance of TED also can contribute to psychological symptoms. Talk with your doctor about any anxiety, brain fog, low mood, and stress you experience. Bringing the thyroid hormonal balance into range may help these symptoms.³

Adjusting to TED and how symptoms affect you takes time. Many of the respondents' documentary titles showed the range of discomfort caused by life with TED:

• “All Eyes Are Beautiful”
• “Getting Used to the New You”
• “Learning to See Yourself Differently”
• “Fear Behind the Eyes”
• “In the Eye of a Thyroid Storm”
• “Life With My Crazy Eye”
• “My Struggles of Daily Life Living With TED”
• “Who Am I Looking at in the Mirror?”
• “Life Changes With TED”

Some titles showed others' lack of understanding

People who do not live with TED usually do not understand the disease. They often make insensitive comments about the physical symptoms they see. Half of the survey respondents felt judged by others based on their appearance. TED symptoms can cause people to isolate themselves and have lower self-esteem.

Several respondents' documentary titles addressed educating others and increasing awareness about TED:

• “A Look Into TED”
• “How Do I Explain the Pain in My Eyes?”
• “My Name Is Not Bug Eyes”
• “Through My Eyes”

Continuing the conversation

We are curious: What would you title your documentary about living with TED? Please share your thoughts with us!

The 2022 TED In America survey was conducted online from January 10, 2022, to April 6, 2022. The survey was completed by 100 people.