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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.

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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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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