Ask the Advocate: How Can I Manage the Emotional Challenges of TED?

Before treatment, I was dealing with very red, dry, and watery eyes. My eyes often looked strained or like I was crying. It was both concerning and embarrassing.

My worst symptoms came when the muscles behind my eyes swelled so much that they pushed my eyes forward and my eyelids started to retract. This created a startling effect, and I looked like a completely different person. It got to the point where I couldn’t close my eyelids all the way while sleeping. I would constantly wake up at night in pain, which affected my energy level during the day.

It was a really emotionally difficult time because I felt like I completely lost myself. Not many people know what that’s like to look in the mirror and not recognize yourself. It was heartbreaking, traumatic, and completely outside of my control.

Seeing my face in mirrors and photos became incredible triggers. I would see myself in new photos and think, “Who is that person?” Old photos reminded me of who I was before and what had been taken from me.

I completely avoided photos for years because they were too difficult to navigate. Someone would pull out a camera and a million thoughts would go through my head: “What am I going to look like in this picture? Are they going to post it on social media? How are they going to feel when I asked them to untag me or take it down?”

I don’t like saying the phrase “facial disfigurement,” but that’s what the condition caused.

It’s the most difficult thing I’ve ever had to navigate. My symptoms are a lot better after surgery, which I’m incredibly grateful for, but things will never be the same. The person I see in pictures from years ago is a different person who’s unburdened by this trauma.

I’m still doing a lot of emotional work because while my mental health is better now that I’ve gotten treatment, surgeries don’t fix the emotional effects.

There are online groups for people with thyroid eye disease, but it’s important to find the groups that work well for your needs and where you’re at.

There’s understandably a lot of sadness and fear in groups for this condition. For some people, seeing those posts might be validating. It might help them feel better. But for me, I often felt more scared.

I stayed in some groups for the condition on Facebook, but I had to change my settings to turn off the notifications. I might be having a good day and then a post about the condition would pop up in my newsfeed. If I wasn’t emotionally ready for that, it would hit me like a ton of bricks.

I found that going to online resources that were dedicated to thyroid eye disease was more helpful because I could choose when to visit them.

I’m glad that online platforms exist, but I think it’s important to find the right one for you.

If someone isn’t feeling connected to the communities they find for thyroid eye disease, they can look for resources for people with chronic and autoimmune conditions more generally.

I have a lot of friends with different chronic conditions, and it’s freeing to talk to them. We can talk broadly about our life experiences, many of which are similar, without all of the triggering details associated with my own condition.

How we talk with doctors, how doctors respond to us, requesting special accommodations at work, navigating relationships with friends and family members — I think there are a lot of shared in the chronic condition community.

Makeup has been incredibly helpful for me — and how I use it has changed over time.

Before surgery, I used dark eyeshadow and adjusted the focal points, shapes, and shadows around my eyes to mask some of my symptoms and help me feel more like myself.

After surgery, I’m using makeup more as a form of expression. It helps me connect more with the person I see in the mirror and express who I am and who I want to be.

After multiple surgeries, my eyes look more like they used to but they’re still quite prominent. I thought, “What if I own that and purposefully draw focus to my eyes?” So I bought makeup palettes with bright colors and sparkles that would draw attention to my eyes.

It’s been very freeing because now someone will stop me and say, “I love your eye makeup. It’s so cool!” Before, people would say, “Wow, your eyes are so big.”

Now, they’re commenting on a choice I’ve made about how I creatively express myself. It’s a nice change.

It can be really hard to understand what someone else is going through, especially when they’re coping with a rare medical condition. When someone we love is in distress, I think it’s human nature to think, “I’m not sure what to do. I’ll say something that would make me feel better.” But that might not be what helps them feel better.

People would often tell me, “I don’t see a difference in how you look.” I know they were trying to be kind and helpful, but comments like that had a negative effect on me. It’s similar to saying to someone with an invisible condition, “Oh, you don’t look sick.”

I’m a big fan of listening and asking, “Is there something that I can do to support you?”

And I think when someone is going through something traumatic, a direct approach like a phone call may not always be the right approach because it’s emotionally demanding.

Again, I think it’s important to try to look at things from the point of the receiver. I might be having a great day, not thinking about my eyes, and then I get a phone call asking questions about the most traumatic moments of my life.

It might be helpful to take a more indirect approach, like a text: “Hey, I’ve been thinking about you. I hope you’re doing OK. I’m here if there’s anything you ever want to chat about.”

That leaves space for the person to decide if and when they want to talk about it.

Oftentimes, I just need a break. I live with this condition every moment of my life but don’t want to talk about it all the time. I would much rather hang out, laugh, play a board game, or talk about literally anything else.

I’m so much more than this condition.

Jessica Hanson is an actor, singer, writer, yoga fitness instructor, and patient advocate in New York City. She lives with multiple autoimmune conditions, including Celiac disease, Graves’ disease, and thyroid eye disease. She’s the founder of a gluten-free blog, Tasty Meditation, and she writes and speaks about her experiences living with autoimmune conditions to create resources and connections that she hopes will help others feel less alone.