Thyroid eye disease, or TED, is rare. But for those who have it, the effects can be wide-ranging and sometimes lead to others. Facial changes like bulging eyes and a “staring” look can make you feel self-conscious or spark negative social feedback. Eye pain and vision problems may not only cause physical distress, but can also take an emotional and psychological toll.
When you think about the sources of your discomfort, though, you can start to pinpoint what you can do about them. There are many treatments for TED, including new ones. There’s also a lot you can do to take care of yourself and stay mentally healthy.
What Are The Physical Effects of TED?
How you look. Common signs of TED are bloodshot or watery eyes and red, puffy eyelids. Some symptoms come and go. However, facial changes such as the “staring” expression that comes from swollen eye muscles and fatty tissues pushing your eyes forward – which is called proptosis – can linger.
Pain and discomfort. Other symptoms only you might notice, such as dry, gritty-feeling eyes and light sensitivity, can cause emotional stress. This can grow with problems such as double vision, which happens when your eye muscles swell and stiffen so your eyes don’t align.
Hormonal changes. Fluctuating thyroid levels can affect your moods. You might feel anxious or on edge. These effects likely will get better when your hormone levels even out with treatment.
What Are the Social and Emotional Effects of TED?
Dealing with changes in your appearance and managing pain can trigger profound emotional issues. For example, you might feel anger about having the condition and struggle with your confidence and self-esteem.
Your changing looks can affect you not only personally, but socially. For lots of people, one of the hardest aspects of TED is how the physical changes can not only disturb your self-image but be deeply upsetting if other people make judgments or react poorly.
The emotional challenges of dealing with TED can branch out to public places, social situations, relationships, and your place of work. All these things might make you want to withdraw. The good news is that there are growing numbers of treatments for the physical effects of TED and ways to improve your mental health.
A small U.S. study of people who have chronic, or ongoing TED found that 28% had feelings of depression and 34% had anxiety related to the disease. These effects lasted for some time after the major symptoms had gone away. Researchers noted that these challenges were helping to drive the search for new treatments.
How Can My Care Team Help With the Non-Vision Effects of TED?
As you talk with your doctor about your TED treatment, let them know about how the condition affects your mental state. Ask for info about counseling or therapy with someone who specializes in TED. Get to know all you can about how this condition will affect your daily life. Knowing what to expect will help you plan ways to manage it and help you feel more in control.
What Can I Do Right Now to Ease the Emotional Impact of TED?
There are several things you can do to ease the stress of managing TED and take charge of your emotional well-being:
- Stay connected. Keep up with your family and friends. They want to support you, so don’t be afraid to talk with them about how you feel.
- Get support. Search out support groups for people who live with TED. The Graves’ Disease and Thyroid Foundation has a list of both in-person and online communities that enable people living with these conditions to meet and share their experiences.
- Stay active: Physical activity is a great way to deal with stress. Ask your care team what types of exercise might be right for your fitness level and the current state of your vision.
- Stay engaged. Spending time doing activities or hobbies you enjoy will help you relax and focus on what makes you feel good about life.
- Remember that you’re in charge. For most people, the emotional impact of TED eases as they treat the disease and the physical symptoms are controlled. Staying on top of your treatment will help you feel better mentally as well as physically.
