Emotional Impact of Thyroid Eye Disease

Reviewed by: HU Medical Review Board | Last reviewed: October 2021

If popular medical shows are to be believed, every health problem can be solved and treated in an hour. When you live with a complicated and rare condition like thyroid eye disease (TED), that is not reality.

First, TED might be misdiagnosed. Swelling and redness of the eyes and the tissue around the eyes can mimic allergic reactions or seasonal allergies. Misdiagnosis or delayed diagnosis is frustrating and leads to emotional stress.1

Even once you are diagnosed with TED, the uncertainty continues. Symptoms can be unpredictable, and the cosmetic changes that TED can cause may be distressing and change over time.2

TED varies from person to person, so no one can tell you what your life will be like while living with thyroid eye disease. This uncertainty is common and sometimes hard to live with, but with practice, it can be managed.2

Why can living with TED be hard?

The visible signs of TED can be upsetting. Cosmetic changes to your eyes and face can leave you feeling nervous, scared, or isolated. Sometimes, you notice these changes yet no one else does. This can be frustrating and distressing.3

Emotional impact

Living with a chronic condition can be challenging. When that condition changes the appearance of your eyes or face, the emotional impact may be greater. Some ways that TED can impact your emotions include:3

  • Altered body image
  • Reduced quality of life
  • Poor self-esteem
  • Negative self-perception
  • Impaired social interactions

You might become angry and irritable because of your TED symptoms. Depression and anxiety occur more frequently in those with TED. You might choose to stop going to certain social functions. All of these things can lead to a depressed mood or feeling anxious. It is important to call your doctor if you have feelings of depression or anxiety. There is help available to you.4

How are your relationships affected?

It can be hard to explain your condition to others. Those who are close to you and care about you will want to hear you. Think about ways to explain to these people first. Keep it short and to the point to help avoid any myths or misconceptions about TED.

Try to be upfront with your partner about any flare-ups or pain you are having. You and your partner may have to make adjustments to your intimacy, but you can do it together.

The relationship you have with your doctor is important. Be your own advocate. Do not be afraid to ask for a second opinion or ask questions for the care you deserve. Find a TED specialist who can help you get the care you need.

Focus on the here and now

Having a rare disease like TED can be isolating, but you are not alone. Focus on the here and now. The challenges will come. Try to take care of yourself and understand that these hurdles exist, but there are ways to navigate over them. Find and grow your support system, find the right care team, and focus on you.

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