A person has their finger hovering above their phone contemplating whether to press post.

How I Became an Advocate: Jill's Story

Last updated: January 2023

It was January of 2021, and I was feeling more alone than ever. We had been going through a pandemic and so everything was scary and there was still so much that was unknown. I remember thinking to myself that I am tired of hiding the fact that I have Graves' and thyroid eye disease (TED). I also happened to discover that it was thyroid awareness month. So I just decided to write a post about it on my personal Instagram, and if nothing else, it was out there and maybe I will feel a weight lifted off my chest for finally talking about it. Little did I know the effect the post would have on me.

Just post it! My first post about thyroid eye disease

I remember rewriting the post over and over again. Was I saying what I wanted to say? Does it sound like I was trying to get sympathy? That’s not what I wanted or why I ultimately posted about it. I just wanted it out there because I felt like it was not talked about enough. I mean, I had never heard of it until I was diagnosed. So I finally stopped overthinking and hit "post." Up it went.

I got tons of comments and messages about other people dealing with what I am. I had some people ask me questions and some asked for advice, which I was happy to give. It was incredible and it made me feel like I had this new community of people that I could relate to, which I had never had before. I liked being able to help people and if I could make one less person feel alone, that was great.

Now, writing for thyroid eye disease.net, I have never been more grateful. People need to be able to share their stories and not feel like they are going to be judged for it. They need to be able to talk about the highs and lows, and they need to feel connected to other people. They need to feel that they are not on this rollercoaster alone. Thinking that you are alone is a scary place to be.

The brightside

I’m so happy we have this forum for anyone to look at. I wish I had this when I was first diagnosed because I just remember being so confused and having so many questions. I wish I had a site that I could go to whenever I had a concern or question. Sometimes it can be hard getting in touch with a doctor, but I know if I had a forum to go to back then, I wouldn’t have had the high anxiety that I suffered through at the beginning. I would have been able to read stories about other individuals dealing with what I am dealing with. It can be scary to just search for answers randomly on the internet, it’s much better to be on a site and read real stories from other people diagnosed with what you are diagnosed with.

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