Living Well With Thyroid Eye Disease

Living with Thyroid Eye Disease (TED) can be challenging—physically, emotionally, and mentally. From changes in appearance to vision problems and eye discomfort, the impact of TED often goes far beyond the eyes. But with the right support, treatment plan, and mindset, it is possible to live well with TED.

As someone who’s been on this journey, I’ve learned that living well doesn’t mean pretending TED doesn’t exist—it means learning how to manage it, advocate for yourself, and prioritize your overall wellness.

Here are a few things that have made a difference in my journey:

Find the Right Care Team: Working with a knowledgeable ophthalmologist, endocrinologist, or TED specialist is key. Don’t be afraid to ask questions or seek second opinions.

Educate Yourself: Understanding TED and your treatment options can help you make informed decisions and feel more in control of your health.

Protect Your Eyes: Sunglasses, cold compresses, and proper eye care can help manage day-to-day discomfort and light sensitivity.

Join a Community: Support groups—whether online or in person—can connect you with others who truly understand what you're going through.

Advocate for Your Needs: Whether it’s insurance approvals or access to emerging therapies, being your own advocate (or finding an Independent Patient Advocate to help) can make a big difference.

Living well with TED means finding joy where you are, taking back your power, and knowing you're not alone. Healing isn’t linear, but hope is always within reach.