Worries of TED

It’s been 6 years since I was diagnosed with thyroid eye disease (TED). It’s been 3 years since I have been in the active phase. Every October, around the time I first had double vision, I find worries will creep into my mind.

Worrying about thyroid eye disease

The what if’s...

What happens if I wake up with double vision? What happens if light bothers me again? What happens if I suddenly have irritated eyes? What happens if all this progress I have made over the last three years vanishes within a single morning? 

Being out of the active phase now longer than I was in it is a feat within itself. When I was going through it, I could not see the light at the end of the tunnel. Then the pandemic happened which allowed the worry of TED to shift into the background.

This caused my body to heal without the stress of my worries overwhelming me daily. The focus shift was a blessing in disguise in some regards. It was replaced with something even more terrifying, something I could not imagine was possible.

When I was going through the extremely uncomfortable symptoms of TED, I couldn’t write about it. Thinking back to who I was in the active phase, I feel overwhelmingly sad.

Fight or flight

Living in fight or flight mode for years on end, being in survival mode, had always been a comfort place. Medical problems weren’t new to me. TED was just another diagnosis I added to my already long list for someone as young as I was.

I hadn’t heard of TED before being diagnosed with it. This was before ads for TED treatments played on every major TV network. All I had were Facebook groups overwhelmed by people suffering from the disease seeking solace from strangers online. I left the groups after seeing one too many people sharing photos of their changed eyes irritated by the discomforts of this awful disease.

Present process

When I no longer felt the symptoms and the light sensitivity finally faded, I was amazed at how quickly I carried on with my life. Once I was out of the tunnel, I could look back at where I had been.

Processing thyroid eye disease takes time. It’s a lot of hard work and energy to sort through the mess of how much change TED causes in one’s life. Though taking some time off this year from writing about TED to work on myself in therapy and adjust to the changes happening in my life, I have felt the worries have returned.

They’re not actual worries, more like thought bubbles that float around in my head when there’s even an inkling of my TED days. When I first wake up in the morning and I have a hard time reading a book on my Kindle, I panic a bit. Why aren’t my eyes adjusting? What’s going on? Nothing is going on but the thought is always there, waiting to pounce.

Are you currently worrying about thyroid eye disease?

How do you manage your worries surrounding your TED? Leave a comment in the comments section or join the conversation with others in our forums.