Ways to Support Someone Who Has TED
Last updated: May 2023
When I was diagnosed with thyroid eye disease (TED), everything felt different. I had an answer, a name for what I was experiencing, but I did not quite understand the depths of what having this disease meant. The changes I would share, and the day-to-day struggles I would face. I felt I was being forced down a path I did not choose.
Luckily, I had my mom with me. Throughout my entire TED journey, she was the person I relied on. She was the one I complained to when I was frustrated and cried to when I was sad. She was there with me through the thick of it.
Thinking back on my journey with this disease, I have thought a lot about the ways in which loved ones play a role in our disease. How they support us and love us when they themselves do not know what is going on with us.
Ways to support someone with thyroid eye disease
Go with them to doctor’s appointments
Doctor’s appointments can be overwhelming and stressful. Being there for a loved one, supporting them through the process, and hearing what is being said in the room with the doctor is a great way to support someone. Knowing what questions they want to ask beforehand, taking notes on your phone for them, and reminding them it is going to be ok, are little things that can be done to make the experience better.
Validate their feelings
Validating someone’s feelings when they are going through a difficult journey can be extremely beneficial. This disease comes with a lot of frustration, worry, anger, and fear. You can tell them something like, "What you are going through is not easy and you have every right to feel the way you do. Your feelings are valid."
Listening to their struggles and letting someone talk can be more powerful than you think. This disease can be quite isolating. Allowing them to open up instead of bottling up their feelings inside can be quite cathartic.
Drive them places
TED comes with a lot of unpredictability and change. Sometimes, vision can fluctuate. Double vision can make it difficult to perform daily tasks, such as driving. Offering to drive a loved one someplace can be a nice gesture. It is a simple way to let them know you are there to support them.
Be a soft place to land
When I interviewed my mom about her experience with my TED diagnosis, I asked her what advice she would give to someone supporting their loved ones with this disease. Here was her response:
"My advice would be just to be there for their loved one. Ask them what type of assistance they need. Go to appointments with them. Drive them where they need to go. Maybe seek out people who have been there, and done that. Tell them to be patient with their loved one. Just be a soft place to land."
Share other ways to support someone with TED
Are you a person with thyroid eye disease? If so, what are some ways that other people can support you through your journey with TED? If you are a loved one of someone with TED, what ways do you support your loved one?
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What in your life has TED impacted? (Select all that apply)