What It's Like Living With TED

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

Living with thyroid eye disease (TED) affects your physical, mental, and social well-being. It comes as no surprise that your eyes and face are the most significant point of contact between you and others.1

If you have TED, you may have changes to your face and eyes that can affect how others react to you, which can be socially isolating and hard to cope with. Because of this, your relationships may change. All of these factors can lead to distressing mental health symptoms and cause a decrease in your self-esteem.1

Quality of life

Your quality of life and how you cope with TED matters. Your TED specialist will want to know how TED impacts all aspects of your life, including your mental and physical health.2

The way that TED impacts your quality of life can influence how your doctor classifies the severity of your symptoms. This can affect your treatment. Your TED specialist will look to manage the serious effects of TED while preserving or improving your quality of life.3,4

A study reporting insights from 714 people with moderate to severe TED looked at self-reported quality of life scores. The study revealed that TED had a considerable impact on the participants' quality of life. Vision problems (including double vision and misaligned eyes) and eye pain were the highest impact on quality of life.4

Coping with vision problems

Pain and vision problems can limit how you do certain things in your life. This might include driving, reading, or performing daily tasks. When first diagnosed with TED, many people worry that they will not be able to drive again. People with TED should not drive if their vision blurs or they experience double vision.2,5

People with TED may be legally required to let their state motor vehicle department and insurance company know about a diagnosis that could impair their driving. This varies from state to state and country to country.2,5

Social and emotional impact

The symptoms of TED can vary widely. Even if your symptoms are mild, you may still experience pain or discomfort that is hard to see. This can make it hard for those around you to understand why you are in pain or uncomfortable.1,2

The visible signs of TED can be upsetting. You may have significant changes to your face and eyes. This can lead to emotional distress and worry, along with the pain these may cause.1,2

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.2

Coping with the costs of TED

Thyroid eye disease can be especially damaging to a person’s finances if it becomes hard to work. The main symptoms of TED – vision changes and pain – plus time lost to doctor’s visits can make work-life balance difficult for many people and impossible for some.2

Finding financial support can help relieve the anxiety of how to pay for the extra medical expenses that come with TED. The Graves’ Disease and Thyroid Foundation offers many suggestions for groups that can help.2

Finding your strength

Understanding your own thoughts, feelings, and reactions to living with TED can be your first step in learning to cope with the condition. Once you understand these, you can begin to communicate to the people in your life who are important to you.

Remember that your mental and emotional health are important to your overall health. You are not alone in your feelings. Talk to your doctor about these things.

Online communities and forums for people living with TED may provide you with more support. Surround yourself with those who love and understand you. You will find and develop a meaningful quality of life while living with TED.

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