Thyroid Eye Disease and Mental Health: How to Cope With Emotional Challenges

If you have thyroid eye disease (TED), you may have experienced emotional or mental issues, such as anxiety, body image distress, depression, and emotional exhaustion, that are often associated with this chronic autoimmune condition.
If you’ve experienced emotional or mental effects of TED, there are some key strategies that can help you improve your quality of life. Here are some common issues TED can cause and strategies that might help.
Common Emotional and Mental Issues Related to TED
The impact of TED goes far beyond physical symptoms, and the mental effects of living with chronic thyroid eye disease can affect your quality of life. Some common issues include:
Anxiety
For many people, anxiety begins during the diagnosis process. You may see an ophthalmologist because of eye or vision problems, only to find out you have a chronic autoimmune disease, which can be overwhelming, says Catherine Hwang, MD, an ophthalmologist and oculoplastic surgeon at Cleveland Clinic Cole Eye Institute. “A lot of patients come into the office and don’t know what to expect from the disease,” she says. “It’s the anxiety of the unknown.”
Living with a chronic condition that can be unpredictable can also contribute to anxiety, says Stella Chung, MD, an assistant professor of ophthalmology at New York University Grossman School of Medicine in New York City. “The disease fluctuates, with patients never feeling fully the relief of being in remission forever. They are waiting for some kind of change, whether an improvement or a worsening.”
Depression
The higher rate of depression among people with TED can stem from a change in appearance caused by eyelid retraction, which can lead to bulging eyes or eye misalignment. “It can affect their eyes and whole face [and affect their sense of] identity, because they don’t look like themselves anymore,” says Dr. Hwang. “It [can be] very taxing to patients.”
Social Isolation
Anxiety and depression may fuel a tendency to withdraw socially when you have TED, and changes in physical appearance can make social situations feel especially difficult or overwhelming. A change in appearance may also mean having to deal with repeated questions. It can be frustrating and exhausting to explain it over and over again, and you may find yourself wanting to avoid social situations as a result.
Low Self-Esteem
Strategies to Cope With the Emotional Challenges of TED
Just as physical symptoms of TED must be managed with treatment, it’s also important to address the emotional challenges. Here are some effective strategies you can use to help ease anxiety, feelings of isolation, and other emotional and mental health symptoms.
“In treating TED, I view emotional care as inseparable from medical and surgical management,” says Benyam Kinde, MD, PhD, an assistant professor of ophthalmology at Stanford University School of Medicine in Palo Alto, California.
Here are some things Dr. Kinde and Hwang suggest to improve your emotional health:
Stick With Your TED Treatment Plan
Having a chronic autoimmune disease can make you feel like you’re not in control. Staying on top of medications, appointments, and follow-ups can result in relief from symptoms such as eye dryness, pain, and swelling and double vision. And this will improve your overall emotional health and give you a sense of control.
Easing symptoms can help in other ways, too. “Proactive treatment of ocular surface symptoms improves sleep and daily comfort, which directly supports mood,” says Kinde.
Educate Yourself
“Education about the disease course reduces anxiety by restoring predictability,” says Kinde. Ask your doctor questions, go on reputable medical websites, and look at new research. There are many ways you can learn about the disease.
Join Support Groups
“There’s a lot of social media support,” says Hwang. Between online groups and national organizations that host support groups, there are many ways to reach out to others who are going through the same thing. “Learning from other people’s journeys is really important,” she adds. It will help normalize your experience and ease the sense of isolation.
Get Mental Health Support
Counseling or therapy can help with anxiety, depression, and low self-esteem. “I strongly encourage mental health support, particularly cognitive behavioral therapy, for patients struggling with anxiety or depressive symptoms,” says Kinde.
Know all of your options.
Depending on disease severity, there are a number of procedures and surgeries that can help you return closer to your baseline once the inflammation is under control. Outlining a clear reconstructive road map, which may include eyelid surgery, orbital decompression (to decrease bulging), or strabismus surgery (for misalignment), can provide hope and a trajectory. “When patients understand that there is a plan and a team to provide guidance, their resilience often improves,” says Kinde.
The Takeaway
- Living with thyroid eye disease leads to emotional and mental concerns on top of physical symptoms.
- Anxiety, depression, and low self-esteem are common in people with TED because of the pain and discomfort of the disease and resulting altered appearance.
- You can help manage your emotional health by following some basic strategies that include educating yourself about the disease, seeking out mental health support, and sticking to the treatment plan.
- Smith TJ et al. How Patients Experience Thyroid Eye Disease. Frontiers in Endocrinology. November 9, 2023.
- Lee TC et al. Evaluation of Depression and Anxiety in a Diverse Population With Thyroid Eye Disease Using the Nationwide NIH All of Us Database. Ophthalmic Plastic and Reconstructive Surgery. May/June 2023.
- Wang Y et al. Inflammatory and Noninflammatory Thyroid Eye Disease: Comparison of Disease Signs, Symptoms, and Quality of Life in Patients in the United States. Endocrine Practice. September 2022.

Edmund Tsui, MD
Medical Reviewer
Edmund Tsui, MD, is an assistant professor of ophthalmology at the Jules Stein Eye Institute in the David Geffen School of Medicine at UCLA.
He earned his medical degree from Dartmouth. He completed an ophthalmology residency at the NYU Grossman School of Medicine, where he was chief resident, followed by a fellowship in uveitis and ocular inflammatory disease at the Francis I. Proctor Foundation for Research in Ophthalmology at the University of California in San Francisco.
Dr. Tsui is committed to advancing the field of ophthalmology. His research focuses on utilizing state-of-the-art ophthalmic imaging technology to improve the diagnosis and monitoring of uveitis. He is a co-investigator in several multicenter clinical trials investigating therapeutics for uveitis. He is the author of over 80 peer-reviewed publications and has given talks at national and international conferences.
Along with his clinical and research responsibilities, Tsui teaches medical students and residents. He is on the Association for Research in Vision and Ophthalmology's professional development and education committee, as well as the advocacy and outreach committee, which seeks to increase funding and awareness of vision research. He also serves on the editorial board of Ophthalmology and the executive committee of the American Uveitis Society.

Nina Wasserman
Author
Nina Wasserman is a journalist with more than a decade of experience interviewing people and writing on a variety of topics, including health, medicine, business, and faith, as well as human interest stories. Wasserman also home-schools her two children in New Jersey and teaches writing to middle school students. Her passion is foraging for mushrooms and edible plants in the woods, a practice that contributes to her health and wellness.