What I Would Warn Myself About TED

There was no time between who I was before thyroid eye disease (TED) and who I became once I had TED. Of course, there was a time between the symptoms showing up and being diagnosed. But I was unaware of the changes until I woke up with double vision on a random Wednesday in October a few years ago. I had gone to bed as one person, the person I was familiar with, who I had lived with my whole life, and woken up as someone I did not know.

It is quite jarring, to have a sudden shift in perspective, to see reality through a lens I did not choose. If I could tell myself something over the summer before everything changed, when symptoms were quietly developing without me noticing, this is what I would share.

What I would have warned myself about thyroid eye disease before it started

Shock to the system

I am about to go on a roller coaster, not only physically but mentally. I am going to be dealing with doctors and people I never imagined I would interact with. I never thought about double vision or eye swelling or eye problems until I experienced them.

It is supposed to feel overwhelming and at times unnerving. I have never experienced this before. I will not feel this way forever, but it is a lot when I do.

Appreciate my old eyes

I wish I could take a second to look in the mirror with my old eyes and tell them, thank you. Silly, I know. But I took them for granted for so many years that I wish I could have taken a second to appreciate what I had before they were gone.

I did not get a chance to say goodbye because I did not know what was going on. I was not paying attention. I noticed little changes but I did not think much of it until everything changed all at once.

I would tell myself now to not overlook the little changes. The swollen under eyes. The photos I took when I could see little differences. Pay attention to them. They will be important down the road.

Getting used to my new eyes

It is a process. A process of accepting that the old reality of my eyes is gone and having no choice but to embrace what is here now. Yes, my eyes look different. Yes, my eyes feel different. My eyes have not gone anywhere, I can still see things. But the way I see them has dramatically changed.

This happens very gradually. Over a number of months, maybe even years, if I am being totally honest, to look in the mirror and see myself again. And even then, I would question what I see. Is this how I look to everyone? Is this how they see me?

I remind myself that most people are too busy living in their own heads to really notice my eyes are significantly different. The majority of people do not care. The people around me notice a difference but they do not say anything unless I say something first.

Knowing what you know now, what would you warn yourself about TED if you had the chance before your symptoms started?