A woman is screaming and crying rainbows as an emotional release.

It’s Okay to Not Feel Strong - Thoughts on Thyroid Eye Disease

Last updated: May 2022

Something that people tell me quite frequently regarding my journey with Graves’ disease and thyroid eye disease (TED) is, "Wow, you’re so strong to have gone through all that."

Not feeling strong with thyroid eye disease

Honestly, strong is the opposite of what I have felt. I did not feel strong when I was watching my face change. I did not feel strong when I locked myself in the bathroom after my surgeries and treatments were repeatedly canceled due to the COVID-19 pandemic. I did not feel strong when I cried myself to sleep again and again because my eyes were farther forward than my eyebrows. Even now I do not feel strong as I type this.

I put much of my life on hold as I waited for treatment. Most of the past two years have been spent waiting for a phone call - for surgeries to be scheduled, and treatments to resume. If my doctors could squeeze me in the next week I wanted to be available. Nothing was more important to me than getting treatment and hopefully getting a bit of myself back again.

Coping with feelings, finding perspective

While I waited I made makeup tutorials for thyroid eye disease, wrote about my experiences, and answered questions from others in the community. I did not do any of this because I felt strong. I was in the midst of a very painful experience. I find that being productive helps to ease my anxiety, and if I could help others as I waited for treatment, then that was time well spent.

One day I was walking through the park with a friend. We were discussing how it was difficult for me in that time of deep sadness to focus on things that brought me joy - music, singing, dancing. I felt like I needed to compartmentalize - if I could just get past my surgeries for TED maybe then I could start moving on with my life. We discussed how it is important to cut ourselves some slack during times of trauma, and that’s when I said it - “This experience has been f***ing traumatic!!!” Something about raising my voice and saying those very specific words out loud gave me release, like a deep exhalation. It’s true - I have been going through a life-altering and deeply traumatic experience that has shaken and permanently rattled everything in my world. I needed to hear myself say those words, and that’s when I started giving myself a break. It was okay to take a break from singing and come back to it when I felt like I had more to give. I had to take care of myself first.

Now every time I need to cut myself some slack and every time someone comments about how strong I am, I remind myself - this experience has been f***ing traumatic. It does not make things better, but it certainly helps to put things in perspective.

It is okay...

So, just in case you need to hear this -

It is okay to not feel strong.

It is okay to feel hurt.

It is okay to take time to take care of yourself.

Some things are f****ing traumatic.

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