That Little Voice in My Head and TED

When you are dealing with a disease as complicated and individualized as thyroid eye disease (TED), the facts can be a bit blurry around the edges. I have been diagnosed with TED, and experience a variety of symptoms on any given day, at any given time. It can be very difficult to stay positive.

A few years ago, I was suffering from itchy watery eyes. They were sensitive to light, and I often felt shooting pains in them. I can remember telling my eye doctor it felt like someone was poking my eyes with toothpicks.

Self-talk contributing to denial of thyroid eye disease diagnosis

This prompted a series of doctors’ visits. They looked for everything from allergies to tumors behind the eyes. Finally, my ophthalmologist suggested it may be thyroid eye disease. Which I then researched online and firmly denied. This was the beginning of the self-talk.

My thyroid was tested, and found to be functioning normally. Even though it is possible to have thyroid eye disease with normal thyroid function, this could not be what was ailing me. I was not comfortable with a diagnosis that was not cut and dried. The problems I was having with my eyes should be easy to diagnose, and easy to cure. More self-talk to help with my denial.

Trying to find answers

In the months that followed that initial diagnosis, I tried hard to follow my TED specialists' orders for treatment. With this disease, my eyes were not always dry, uncomfortable, or bulging. That made it difficult to know just how to proceed.

Although I had been given suggestions for treating the symptoms as they came, I wanted to get ahead of them, or not experience them at all. I found that I was continuously trying to figure out what caused each symptom.

What did I eat yesterday? How was my sleep last night? Did I look at my computer longer than I should have? These questions, and tracking my symptoms did help me feel like I had some control, but even that was just deceptive self-talk.

Entering the inactive phase

After a while, the symptoms related to thyroid eye disease eased ever-so slightly. They also seemed less frequent. I was hopeful my specialist would would deem me cured at my next visit. The tests they performed did, in fact, indicate a change in my symptoms.

My TED specialist explained that I was entering into an inactive phase of TED. I was thrilled to hear this and went on my way telling myself I may never have to see him again.

As time has quietly ticked on, I do occasionally have mild symptoms. I recognize them, use my tried and true tricks for coping with them, and go about my day.

I try hard not to listen to that little voice in my head that wants to panic. Accepting the symptoms as they come and not ignoring them is challenging for me. It is important for me to notice them, and accommodate them.

I am aware, and my doctor has reminded me, that the inactive phase may not last forever. So for now, I try to use my self-talk to remind me to live fully, experience things, and be kind to my eyes along the way.