Model With Ankylosing Spondylitis Chases Dreams – All The Way to New York Fashion Week

Follow Charis Hill while she takes your behind-the-scenes at New York Fashion Week — while battling AS in 6-inch heels

Patient Expert
Charis Hill backstage at the Michael Kuluva 2019 New York fashion show with model Amanda Lepore.
Charis Hill

When I was a child, modeling was something I laughed about. When people said, “Charis, you’re tall and pretty, you should be a model,” I would reply, “No, I like to eat!” and run away.

I loved being barefoot and wearing baggy hand-me-down clothes from my brothers. Sports informed my identity and I had no desire to wear makeup or heels.

After I was diagnosed with ankylosing spondylitis at age 26, I lost the ability to be so active and struggled to find new passions, yet I subconsciously decided to say yes to new things. So, when a friend invited me to model for a charity fashion show, I said yes.

Despite my tendency to look like Jar Jar Binks while trying to walk in heels, I became a model at the age of 26.

I had no idea how to pose without falling over, much less walk gracefully in heels, but I learned quickly. I could pretend to be anyone with someone else’s clothes on my body, and somehow that escape helped rebuild my self-esteem.

Modeling also became a platform for raising awareness about ankylosing spondylitis. I found a way to wear my diagnosis with pride on the runway and I never tried to hide it. When I began my blog, I needed pictures to accompany posts. Rather than finding stock photos, I used my own modeling portfolio. People clicked on posts about my disease journey because they could not understand how I could be a model and sick at the same time.

Without meaning to, I became known as the model with ankylosing spondylitis.

Five years later I was invited to walk in New York Fashion Week for Michael Kuluva, a designer with rheumatoid arthritis. It was an opportunity to raise awareness together, thanks to CreakyJoints.

I knew I would be overdoing it, but I also knew it was worth the recovery time. I said yes.

Show day was a blur. Between bumping into famous people pursued by cameras, wearing six-inch platform stilettos, and changing three outfits in under 30 seconds each; I was too distracted to think about my pain levels. I had been dropped into a world I had only seen in magazines. It was like peering into a snow globe, then suddenly realizing I was inside it.


I grasped the opportunity to have fun and live in the moment, trying not to think about the next day. When I thought about my first step on the runway, I thought about the community I was representing, and from that moment on, I had all the confidence in the world.

For me, modeling is painful and exhausting, and I am only able to do it a few times a year. Yet, I continue modeling because I want to live for as long as I can in the body I have right now. It is important for me to do something that gives me joy, so I want to encourage others to find that something that brings joy, no matter whether it is having a movie night with a friend or walking down a runway in six-inch heels.

I have decided that it is more meaningful for me to use my energy on doing things I love than on protecting my body from the world. I was meant to live, and I am going to enjoy it while it lasts.

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