A woman holds a makeup brush and looks in the mirror at her reflection.

Trying to Move On: Post-Op Thoughts on Thyroid Eye Disease

New surgery, new me! Is that the right phrase?

I would like to say that my journey with thyroid eye disease (TED) has been a rollercoaster, but it has been more like a downward spiral. It has been traumatic, messy, hurtful, and deeply damaging - physically, emotionally, and mentally. I look back on the past few years, and I see a clear divide in my life - the me before TED, and the me with TED.

But now that I am on the other side of orbital decompression and lid surgeries (all of which helped correct some of the damage caused by TED), there is another new me. When I look in the mirror now I do not see the old me, and I do not see the person lost in the downward spiral. I see someone who has been through a lot, perhaps someone who can breathe a little easier, and someone who is trying to move on. But how? This is something that I have actively thought about and am taking specific steps towards.

Moving on after surgery for thyroid eye disease

Getting reacquainted with the camera

While surgeries certainly helped a lot, I do not look exactly like the pre-TED version of me. Between the physical changes and the fact that I’ve avoided being in photos for so long, I have no idea how to “smile for the camera!" anymore. I have started practicing with selfies - I do my hair and makeup, put on a nice outfit, and make sure I feel my best before turning the camera my way. If I like a photo, I post it on social media.

This seems simple, but I want to actively normalize seeing and sharing photos of myself again. I also plan to schedule a practice photo session with my husband. There is no pressure - I will delete all the photos without looking at them if I want to. The goal is only for me to get more comfortable.

Practicing looking at my eyes in the mirror

In the middle of TED, I often looked at myself in the mirror without looking at my eyes. I looked at my hair while drying it or my eyelashes while putting on mascara. By compartmentalizing my focus, I hoped to avoid a meaningful connection with the stranger in the mirror, afraid I would get lost in her sadness. This is a hard habit to break, but each time I catch a glimpse of myself in the mirror I try to make a connection.

Making bold makeup choices

What was once a tool to help me hide my symptoms is now an empowering tool for self-expression. Instead of taking baby steps, I went off the deep end and bought all of the bright eyeshadow palates I desired. Bright colors and sparkles were things that I would have strayed away from in the middle of TED, but now doing something big and bold that would actually draw attention to the area that I am most sensitive about? It felt scary at first, but it was empowering, and even fun, the more I explored.

Seeking out help

I have struggled with finding the right therapist and approaches that work for my needs. Explaining how awful my journey with TED has been can be a daunting task, especially if I am speaking to someone who is not as familiar with autoimmune conditions. I will continue trying to find the right fit, perhaps with someone who specializes in working with individuals who have chronic illnesses.

Doing things I enjoy

For years, I spent so much energy every day navigating TED symptoms, and it was exhausting. I still have some things to navigate (mostly using eye drops in the morning, eye drops before bed, and being mindful of my latest surgery site), but now that things are a bit easier what would happen if I spent that energy, once reserved for TED, doing activities that I love?

I am buying theatre tickets, singing more often, baking bread, and having game nights with friends - could I trick myself into forgetting about TED for just a little while? It’s a practice that is helping me find a greater sense of peace and normalcy.

So, how do I move on after surgery for TED?

People often ask me “How did you get past this? How did you come to terms with how you’ve changed?” The simple answer - I haven’t, but I’m taking small steps forward. It’s not a race to get to the other side. Maybe there is no other side. Maybe I’ll always be in a constant state of adjustment. Maybe I’ll surprise myself and there will come a time when I don’t think about my eyes every day. Only time will tell, but until then I’ll continue one step at a time.

Do you have a thyroid eye disease (TED) story? Click the button below to share with our community!

By providing your email address, you are agreeing to our privacy policy.

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

Join the conversation

Please read our rules before commenting.