Who Is That in the Photo?

I first noticed that my eyes were changing when I looked at myself in a photo. Something was different. Why did I look so…off? The whites of my eyes were red, and while I was smiling (and I remember being legitimately happy), something about my expression looked strained. I reasoned that it was early in the morning, and maybe my eyes were dry from the cold winter weather. Of course, I now know that day marked the beginning of the rollercoaster ride that is my journey with thyroid eye disease (TED).

Who is in that photo?

It only got worse as my symptoms progressed. I hated how I looked in photos, and I often didn’t recognize myself - it must be someone else in my clothes, standing with my friends, staring into the camera lens with those wide red eyes that weren’t mine, masquerading as me. I found that I couldn’t casually “smile for the camera!” I had no idea how the photo would come out, and it never seemed to make me happy. I eventually found one angle that I didn’t completely despise, but wearing sunglasses in photos became an easier solution compared to risking a pose and finding out how it went when it was posted on social media for all to see.

Emotions around photographs

I began dodging photos with friends. If I was hosting a party and the camera came out - “Oh, I left something on the stove!” helped me make a quick exit. I untagged myself in photos on social media because I didn’t want them on my page. I considered asking a friend to take down a photo, but I didn’t think they’d understand. With little success I tried to disable the “Memories” and “On this day in (insert year)” features in apps because seeing a happy photo of myself with my normal eyes and normal face felt just as triggering. 

My emotional journey with TED was complicated by the fact that I was getting married just a few months after my symptoms began, and I was worried about the photographs. I wanted to feel like myself and look back on this day with happiness. I didn’t want to look at pictures and think, “Oh yes, that’s when I was sick and struggling.” So I wrote to my photographer a few weeks before the big day and explained TED along with my concerns. “Thank you for understanding and working with me on this. Basically, if I’m looking straight forward into the camera and smiling I won’t look like myself. I’ll feel much better with candid or posed photos where I’m looking down, looking at my husband, looking anywhere else.” I was grateful that she was so supportive, understanding, and genuinely willing to help me feel more comfortable.

Impact of thyroid eye disease and photos

I think it’s hard for loved ones to grasp just how impactful not recognizing yourself in pictures is and how damaging it can be to self-esteem and mental health. Comments like “We’re your friends, we don’t care what you look like!” and “You’ll have surgery and everything will be fine!” though well-intended felt dismissive and diminished the true emotional trauma I was going through. But on two occasions I felt seen. “Oh let’s take a fun group photo with sunglasses!” She looked at me, leaned in, and whispered, “Is that okay? I’ve been listening.” And a tear came to my eye. I eventually came to accept that it was okay to not take pictures for a while. It was better for my mental health and overall well-being, though I was always game for group sunglass photos.

I’m happy to say that I finally had orbital decompression surgery a few weeks ago. As I wait for the internal swelling to go down and for my upcoming lid surgery, I can’t help but have a million questions - What will my eyes look like? I know it won’t be exactly the same as it was before, but will I look more like me? Will I have to re-learn how to tilt my head and smile for the camera? Will I feel comfortable in photos again? I have hope.