4 Things I Would Tell Myself About TED Now

The puffiness under my eyes is not from aging.

When the puffiness from the swelling first formed around my eyes, I asked someone if it was normal. They replied, "Yeah, it's a sign of getting older." I had just turned 25 then and I was almost sure this sign of aging did not occur seemingly overnight.

Until I was diagnosed with thyroid eye disease (TED) a month later, I occasionally wondered if this was just a part of getting old. Then I would laugh at myself for thinking that because of how worse the swelling would get every morning. I was right, it is not a sign of aging. But without any answers, I wondered about all sorts of scenarios that would explain this sudden change around my eyes.

Running into things constantly is my current normal.

Sides of couches, corners of counters, and tables, I ran into anything and everything. Door frames were my enemy, especially when I was not paying attention. My shoulders would hit the side of many door frames more than I would care to admit. This is silly because most of the time, I do not have to consciously be aware of walking through a door. But, when I had TED and an off-balance depth perception issue, moving through spaces caused more awareness than before, or else I would run into things. Do not even get me started with learning new spaces because that was a whole other labyrinth within itself. I just got used to living with the outside of my shins bruised from bumping into things I knew were there but somehow did not see.

It is ok to feel frustrated with my body.

For a long time, I felt a disconnect from what was happening with my body. I had no say over when my eyes would get irritated or puffy or cause a migraine. I had no control over the situation. Which left me feeling really frustrated. Especially when I was reading and I could not read because all the words on the page had split into two. Or I couldn’t drive because my vision was worse than it had ever been and I couldn’t get a new glasses prescription because I was told my vision would change in the near future (and it did).

I think if I didn’t feel frustrated in the moments I couldn’t control, something would be wrong with me. Frustration is a normal human response to situations like this. The frustration lessened as time went on and my symptoms improved.

I am going to be ok.

When I was in the thick of this disease, time moved so slowly. But it moved, even in the moments when I felt like it had stopped. Slowly but surely, my ever-changing eyes started healing. Things got better. I turned a corner of this dark road I had been on for so long and saw the light without it blinding me.

I learned so much about myself and my body along the journey of having TED. I wouldn’t be the person I am today had I not gone through it and for that I am grateful.

What would you tell yourself about thyroid eye disease?

Is there anything that you would want to tell yourself now about TED that you didn't understand or know at the beginning of your journey? Share in the comments below or by clicking the button below.