Two people waving at each other in a forum

Repeat After Me: You Are Not Alone!

Last updated: May 2022

Finding out about my Graves' disease diagnosis and later my thyroid eye disease (TED) diagnosis, I definitely felt alone. I mean, I did not know anyone else who was diagnosed with either disease. Although my grandma and mother both had thyroid issues, they never had exactly what I had. You can have a million people around you saying they are here for you, but unless you can relate to someone, sometimes it really does feel lonely.

Who can relate to me? Who would really understand? No one gets it! Those thoughts were what crossed my mind daily. There is something about sharing stories with someone else going through the same thing that just hits different.

Speaking openly about thyroid eye disease on social media

A couple of years ago, I started talking more about my experience with thyroid eye disease and Graves' disease and writing about it on my social media. I think it was one of the best things I ever did. Writing it out was a form of therapy for me. For the first time, I completely opened up about everything I had been going through for years. This time, it was to a bunch of people on the internet and not my close inner circle. Completely scared to hit post, I did it anyway and waited to see what would happen.

To my complete shock, I had an outpouring of comments and messages from people dealing with the exact same thing as me. We would talk about symptoms, treatments, and everything that happened to us in between. We would ask each other for advice. It was as if we all joined forces, and it was a great feeling.

A safe space

Forums and spaces like this one that I am writing on, are SO important. You can have family, you can have friends, and you can even have the MOST amazing doctor. But it is even more important to have a safe space where you feel comfortable talking and asking questions about anything and everything you are going through with people who are going through it too. Even reading a story about someone going through a similar issue as you could make you feel less alone. At least that is how it was and is for me.

As I have talked about previously, I have opened up to my friends and co-workers about it, but what can they really say? Especially when they are not going through it. Like I also stated in one of my previous stories, it is nice to have your loved ones check in. It is nice to feel that they are thinking about you and are trying to give you support. I have come to realize, though, that some of the best support are those that are dealing with it too. When you have someone say, “Yeah, I understand and I’ve been there” and know that they actually HAVE been there. It just hits different. I am very grateful for forums that are open, safe spaces for people to share and talk with one another about the similar things they are going through.

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