Trusting My Gut

Once, at a three-month follow-up appointment for my thyroid eye disease (TED), my TED doctor saw something strange with my eyes. He sent me to another eye doctor in the hospital to get a second opinion on what he saw, since that office had machines his did not.

Getting a second opinion

I went upstairs to get some scans done on my corneas. This new eye doctor walked in, looked at my eyes, looked at the scans, and quickly diagnosed me with something called Keratoconus. He then went on to list all the symptoms that come along with this disease that mirror TED, such as light sensitivity and double vision.

Questioning the doctor's opinion

He was keen on bringing up how double vision was a main tell that I had Keratoconus. This took me aback. I had never experienced double vision until TED. I didn’t believe this symptom was caused by Keratoconus. I could feel my eyes were sitting in a different part of my skull because of the swelling due to TED, which was causing the double vision. I told him this. How I hadn’t experienced double vision until I woke up with it one morning the previous fall.

Getting dismissed by my doctor

He dismissed my logic by telling me we won’t know for sure what symptoms are from what disease until my TED was resolved. I felt uncomfortable when he kept on dismissing my point of view left and right about my own experience. Especially since he had only met me ten minutes prior to telling me this information. I had lived 25 years of life up to that point and yet I was not being heard because he figured out something about my eyes I had been unaware of until then.

I saw him again a couple of months later for a follow-up and his bedside manner was the same. He knew more about my body than I knew about my lived experience. Once again, he dismissed my double vision saying, we will know once the swelling goes down and I no longer had TED. I didn’t make a third appointment to see this doctor again.

Finding validation

My regular eye doctor has kept up with the Keratoconus. I continue to have a mild version of this disease. My double vision eventually subsided along with my TED. I felt validated with knowing more about my body than a doctor who has just met me.

Although, he did say one thing that stuck with me. When he told me I had Keratoconus, he specifically told me to never touch my eyes again. Major eye rubbing and touching is terrible for this disease. I loved rubbing my eyes, especially when I had TED. It just felt good to get in there. I have not rubbed my eyes since that day. And when I do touch my eyes, I am very mindful of the pressure I use. I believe that’s why my Keratoconus has remained on the mild side.

Trusting my gut

So while he was incorrect about where my double vision stemmed from, I am grateful for the one piece of advice that actually did help me in the long run. Not everything a doctor tells me is correct or has to apply to my experience. Through my experience with TED, I have learned when to trust what someone is saying and when to be hesitant of someone’s words.