Quality of Life and Coping with Thyroid Eye Disease

Reviewed by: HU Medical Review Board

Dealing with the pain from a broken bone or sprained ankle can be agonizing and disrupt your life, but at least you know there is an end in sight for recovery. The reality of living with a rare condition like thyroid eye disease (TED) could mean unanswered questions, frustrating emotions, and changes in your quality of life. The light at the end of the tunnel might be hard to find while living with the symptoms of TED.

TED occurs in phases, with an active (acute) and an inactive (chronic) phase. The active phase can last months to even years and then spontaneously move to the inactive stage. This means symptoms may come and go or last for long periods, changing in severity. This uncertainty can make it hard to know if your TED symptoms are getting worse, remaining stable, or improving.1

The unpredictability of symptoms from person to person can be made worse by the fact that symptoms of TED often impact your cosmetic appearance. Changes to your face and eyes are often the first thing other people notice and can severely affect your quality of life and coping.

Facial changes

Changes to your face and eyes from TED can lead to depression, isolation, and self-consciousness. What you saw earlier may not be what you see now. These changes can make life difficult and coping hard.2

In today’s society, where looks have become increasingly important, living with a visibly different face can be severely distressing. Stigma about attractiveness, success, and severity adds to this distress.

The reality is, you might feel invisible even though you have visible symptoms from TED. People can stare, or strangers can feel like they can make comments about your appearance.

Dealing with staring or uncomfortable questions

If someone is curious about your appearance, it does not necessarily mean they are cruel. When someone is staring at you, try looking back, holding your gaze, and smiling. Many people will smile and look away.

If someone asks, “What is wrong with your eye?” you might choose to say something simple and tell them, “I have a condition that makes my eye swollen.” You can choose to respond however you want, but understanding that most people are curious and not mean might help frame your response.

Emotional strength

Living with TED will mean finding an approach that is both realistic and positive. It is true that living with TED will likely change some parts of your life that may be hard to accept. However, finding a way to accept your new normal will also help you find the path to enjoying what you do have.

Stress can increase the signs, symptoms, and severity of TED. Finding ways to reduce stress will be essential to helping you manage TED.3

Some tips that may help you cope with stress and TED include:3,4

  • Get help for depression and anxiety quickly.
  • Be kind to yourself and remember you are bound to have good days and bad days.
  • Keeping a gratitude journal or participating in counseling, biofeedback, or mindfulness might help.
  • Join a TED support group.
  • Educate yourself and those around you about TED. Be your own advocate. Take control of your TED journey.
  • Eat well and rest. Sleep and proper fuel are essential when facing challenges. This is sometimes easier said than done, as TED can cause sleepless nights and other sleep problems. Talk to your doctor about what options are available and how you might be able to improve the quality of your sleep.

Facing challenges with coping

Even when you do your best to face the challenges that TED gives you, coping can be hard at times. Sometimes those closest to you may not see the changes to your face or eyes or may not acknowledge them. At times, even your doctor may not see what you do. Feeling unsupported by those around you can make coping challenging.

Trust your body, and give yourself grace. Sometimes, taking selfies along your journey can be helpful to show your progress to those who may not see it otherwise. Pictures are also useful for your doctors and can be helpful to show treatment progress.4

Joining support groups with others who understand can be emotionally healing. Online communities and forums allow for support regardless of your location. Finding common ground with others who have TED can help you cope with the condition.4

Changing Faces is a nonprofit organization that provides advice and guidance to those living with visible illnesses. Their peer group chat, online community, and self-guided tools can be helpful when navigating the visible hurdles of TED. Your TED specialist might help you find in-person support as well.

You do not have to cope with TED alone. There is help and, while there will be ups and downs, you can expect to live a happy and fulfilling life while living with TED.

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