Reflecting on Active Phase Photos with Thyroid Eye Disease

I do not enjoy looking at photos and videos of myself from when I was in the active phase of thyroid eye disease (TED). Granted, I didn't take many because the photos were so triggering. I hated how I looked in all of them. I could hardly recognize myself between the redness, eyelid retraction, and forward shift of my eyes.

Photos of myself during active thyroid eye disease

Unfortunately, I couldn't escape photos completely. There was periodically someone walking around at gatherings with a camera. I remember one of my bosses approached me one day asking for a quick photo for social media. In a way, it seemed like such a standard request, but my situation was abnormal. Would it be easier just to take the picture or painfully explain TED and why I was uncomfortable?

My concert performance

Then there was the concert performance that I organized. A friend who had volunteered to manage social media for the concert posted a truly horrific photo of me mid-song. I think perhaps he thought I looked passionate, but to me, it looked like my eyes were going to pop out of my face.

I was absolutely mortified, and I didn't know what to say as he showed me the post with an excited grin. I was in the middle of preparing for the performance while also busily running things behind the scenes. I didn't want to get into a conversation about my emotional medical condition, so I let it go for the moment. I deleted the photo as soon as I took over the account.

An amazing wedding photographer

I also got married during my active phase. Still, fortunately, I had a kind photographer who was very understanding when I reached out to her to explain my condition and request specific angles that worked better for me than others. And I never needed to see the outtakes and photos that didn't turn out well. She delivered a bundle of beautifully edited images. While I didn't look exactly like my old self, it was the very best that I could have hoped for, with all things considered, and I absolutely adore many of those photos.

Photos of my TED symptoms

The active phase

For symptom-tracking reasons, I also had a folder on my phone of photos that I despised - very bland, no facial expression, in the same room/lighting, no makeup, all to have a controlled environment so my doctor and I could track the progress of the disease.

The inactive phase

But once I reached the inactive phase and had several surgeries to help correct the damage TED caused, I decided I didn't want those photos in my life anymore. I went through my library and uploaded all of the symptom-tracking photos (along with various others) to Dropbox to access them again if my doctor ever wanted to see pictures from that timeframe. Then, I deleted them all from my phone.

Photos after my surgeries

I'm still getting used to taking photos as the "new" post-op me. I had 2 incredible surgeons, but going into the operating room, I would never look the same as I did before TED. It's been a process, but it's definitely getting better. I don't shy away when a camera is out. I'm finding that I'm much less triggered and less judgmental when I see myself in new photos. Sometimes I realize that I'm analyzing other components of a photo instead of my eyes.

The other day, a video from my active phase popped up on social media. Who was that person? I thought. I recognized the haircut; I had been experimenting with bangs, hoping to find a new look that might better frame my eyes (I admit now that it was not my best choice).

I recognized the clothes from my closet, the voice, and the makeup techniques I had used to help minimize the appearance of my symptoms. But that person with that face. I watched the video for a minute, observing her talk, trying not to let her face get too animated because that would make her big eyes look even bigger. And I took a moment to appreciate how far I've come.

I've come so far

I still have things to work through and tactics to help me get even more comfortable with photos. I still look in the mirror, knowing that my face is different. But I am doing so much better, and my surgeons were frankly really f***ing amazing. I've come so far and have been through so much. I am so very grateful and fortunate to be where I am now.