Feeling Disconnected From Others

Sitting in the waiting room of my thyroid eye disease (TED) doctor, I am surrounded by his other patients. While he was referred to me by my thyroid doctor to treat patients with TED, that is not the only kind of disease he deals with. I look around and see people with all sorts of eye problems, many of which are not visible to the naked eye. In a waiting room of patients, I am once again on my own.

A lonely journey: Feeling disconnected from others because of thyroid eye disease

With TED being a rare disease, I felt disconnected from those around me. I could tell someone what I was going through and they could offer a sympathized response but that’s about it. At the time I was dealing with this, everyone who I would talk about it with did not know anyone else who had this.

People could mention thyroid issues. We could talk about a mutual understanding of the process of finding the right dosage of medication. We could talk about how much of a pain it is to get our blood drawn only to discover more changes have to be made to get as close to perfect or at least as steady labs as possible. But when it comes to this eye disease, I did not have anyone I could turn to.

Internet groups

There were groups on the internet, primarily Facebook, where people found solace in the hardships of TED. Those groups scared me. They scared me because everyone was either complaining about how bad the disease is or discussing their fears, or surgery, or how awful recovery is after surgery.

My symptoms were not like the people in this group either. My eyes were different than they were before but they were not entirely bulgy. Something was different and for some it was off-putting but behind my glasses, because my lower eyelids never retracted, those who did not know me prior to TED would have a hard time knowing how much I was struggling. It was visible to those on the eye disease spectrum but less so on the TED spectrum.

Finding community afterwards

I had just accepted that this was going to be a solo journey. TED was not on national television ads when I was in the thick of it. Seeking solace online only left me scared of what could happen to my eyes. I did not find community until I was out of the woods with this disease and was asked if I would write about my experience for ThyroidEyeDisease.net.

Through this process of writing my journey, I have been able to read other people’s journeys and connect with readers and other advocates. I did not realize just how lonely I was until I was surrounded with other people with their own experiences with TED and those who I could relate to too. Through this website, I found a community I wish had existed back in 2018. I am very grateful to no longer feel disconnected from others when it comes to thyroid eye disease (TED).

How have you found community in your TED journey?