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.
Even when you’re not in an active disease phase, the emotional impact of the disease can persist, so it’s important to stay on top of the treatment plan.
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.
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