The Diagnosis Process

For a few years, doctors' waiting rooms were common place in my life. At first, there was a lot of fear around it because I did not know what was going on. When I did know what was going on, I was scared it was going to last forever. Now, looking back on when I was first going through the early stages of thyroid eye disease (TED), here is what sticks out.

Doctors

The first doctor I was referred to by my eye doctor was not a match. My mom was my main support through all of this and came to every appointment. With my numerous health issues over the years, this was not uncommon for her to play the supportive role. However, I knew the first doctor I saw was not a match when he mostly addressed my mom during the appointment. He spoke as though I was not there or could not advocate for myself. And when he would address me, he would touch my knee. I am not even sure he was intentionally doing it but it was enough to turn me off from continuing to see him.

The second eye doctor I saw was a referral from my endocrinologist, someone who has seen TED patients before. He was very friendly, personable, and patient with me. As he saw me improve, he would tell me it would be up to me what I wanted to do as far as treatments and surgeries were concerned. Nothing was mandatory in my situation which gave me control in the situation that I was grateful for.

During the diagnosis of thyroid eye disease

There was period of 2 weeks between my double vision showing up and when I was diagnosed with TED where my life was utter chaos. In the sense that there was a lot of back and forth debate as to if I really had TED.

I was not diagnosed with Graves', I had Hashimoto’s so surely this could not be TED. There were lab tests done and a lot of vision evaluations, even an CT scan to determine why my eyes had suddenly and drastically changed.

In the end, it was TED which ended my 2 weeks of denial. I honestly do not know what I was thinking other than not having a diagnosis meant that I could look at this as an alien thing. I did not have to label it or deal with it, it could just exist. Now I know that this was my way of living in denial and putting it off to the side.

Fears

My biggest fear in the early diagnosis phase of TED was not seeing a way out of it. I was told I could be dealing with this for 2-3 years (I ended up dealing with it for 3 years) and that seemed like an eternity at the time. The future seemed dark and I just had to sit still. That is just what it was, unfortunately. But I made it out the other side. There was a light at the end of the tunnel.

What’s your biggest fear with TED? Share your story by clicking the button below.