How Has TED Impacted Your Mental Health?

Mental health can be affected by anything at any time. Every person is different, and what impacts you and how you take care of your mental health is unique to you.

Having any chronic condition, including thyroid eye disease (TED), can affect your life in a variety of ways. We wanted to know more about the impact TED has on mental health, so we asked our patient leaders to share their experiences with us. Here’s what they said.

Jessica described her experience:

"TED has unfortunately been disastrous for my mental health and sense of self. I felt incredibly self-conscious in front of the camera and made excuses to avoid group photos with friends. Seeing pictures of the old me became just as triggering as photos with TED.

I could no longer recognize myself in the mirror, and I had forgotten what I looked like before. Everything felt unfair – I would never see the person the old me would grow to become, and I was left with this new person who was burdened by the long-term trauma of this disease.

Everything was made worse by the significant delays in my treatment caused by the COVID-19 pandemic. While I fully grasped the incredibly complicated circumstances, I couldn’t help but feel helpless, hopeless, and tossed aside, like my pain didn’t matter. Every day was difficult, and my mental health continued to decline.

Now that I’m on the other side of orbital decompression and lid surgeries, I’m working through a lot of emotions. My symptoms have certainly improved a lot, but I will never look exactly like the me before TED. I’m working on coming to terms with that, getting to know this new person, and discovering how I want to express myself now."

Roxann shared:

"Growing older (I am a senior citizen) can be difficult for any woman. Am I vain? Yes, I am but with a reality twist, meaning I am mindful of changes in my body and work to stay ahead of them.

An example would be osteoporosis. I know my bone density can be at risk, so I take the prescribed calcium supplements and do resistance exercises. Then there is weight gain. I am mindful of eating healthy and moving daily to keep a healthy weight. I always felt I could accept the aging process, and I had reasonable control over it.

That is until TED raged all over my face! Not only did my eyes change, but my overall facial features changed. Nothing I did could help me stay ahead of it or change it. I felt defeated and depressed. When I expressed these concerns, I felt judged or regarded as a senior, so why does it matter? Through this time before Tepezza and surgery, I secretly just lived with the depression and sadness."

The importance of mental health

These patient leaders kindly shared their personal experiences with TED impacting their mental health. We also know that TED can affect a person’s life in so many other ways, including physically, financially, and emotionally, and that these all contribute to a person’s overall well-being.

We value your mental health and hope this community space provides a safe, educational, and social environment for our community members to connect with one another and feel heard.

To read about some self-care and coping practices, please visit these pages.

• Why Is Self-Care Important, and How Can We Practice it?
• Self-Care and Comfort Items for People With Thyroid Eye Disease
• Quality of Life and Coping With Thyroid Eye Disease

To learn more about general mental health and access to helpful resources, please read the article below. You can visit our entire mental health resources section on our site menu.

• General Mental Health Resources

Do you have a TED story? Click the button below to share with our community!