Category Archives: modeling

ankylosing spondylitis, modeling

Raising Awareness on the Runway | I Took Ankylosing Spondylitis to New York Fashion Week

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I modeled in New York Fashion Week recently.

Some might say it was a dream come true, but for me it was someone else’s dream I fell into. Alice didn’t expect to fall down a hole into Wonderland, and I didn’t expect to be diagnosed with a lifelong progressive disease when I was 26.

Around the time I was diagnosed with Ankylosing Spondylitis in 2013 I began modeling. Neither the diagnosis nor the modeling were expected. One happened by an invite I almost grudgingly accepted from a friend. The other happened via email from my estranged father. You can figure out which was which – at least I hope you can.

When I began modeling I had just begun hating my body. It had betrayed me by getting sick after decades of playing soccer, running marathons, and being a professional mover; none of which I could continue regularly after I was diagnosed. Being an athlete had been my whole identity. Suddenly I wasn’t anymore, and not by choice.

Being in front of the camera helped rebuild self-esteem and I began to love my body again, which surprised me. But, even more than enjoying being photographed, I uncovered a treasure trove of humanity behind the scenes. When I began sharing my story with Ankylosing Spondylitis (AS), I found many models, hair and makeup artists, designers, and photographers with their own stories of chronic disease.

We are by and large fed stories of health, ability, and perfection by the polished images we see of models on the runway or in magazines. We tend to believe models are perfect, healthy, able beings with happy lives. And in an industry known for celebrating a very narrow, specific type of beauty and body, nonconformity is ill-advised if you’re in the thick of it.

I learned quickly how easy it is to feign – yet also truly find – confidence and identity when performing for the cameras.

Image by Glenn Jones/Ikona Photography ©2014. My first in-studio photo shoot ever. I had no idea what I was getting myself into.

But anyone who knows me knows I’m not known for my conformity, so it wasn’t long before I was being myself. Continue reading Raising Awareness on the Runway | I Took Ankylosing Spondylitis to New York Fashion Week →

#sickbody, Advocacy, ankylosing spondylitis, Arthritis, Charis, chronic disease, chronic pain, health, Invisible disease, modeling, Patient Advocacy, public speaking, sickness, spondyloarthritis

“An Invisible Disease” – my TEDx talk

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In September, I had the honor and privilege of giving a TEDx talk just two weeks after my father died from Ankylosing Spondylitis, a disease I inherited from him. I am so grateful for having this platform to share via the Sacramento TEDx Changemakers series.

I hope you’ll watch and share this video to raise awareness about living with chronic illness, but I also hope you’ll take something away for your own journey.

Click here to watch the 8-minute video:

An Invisible Disease : Charis Hill : Sacramento TEDx Salon

#sickbody, Advocacy, ankylosing spondylitis, Arthritis, Charis, chronic disease, chronic pain, disability, fashion, fashion show, health, Heroes, Invisible disease, modeling, Patient Advocacy, Role Models, sickness, spondyloarthritis, Survivor

Tomorrow I Am Famous

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For 60 seconds I will be famous. On the runway, the catwalk – whatever surface my heels will be wobbling on as I make my legs appear longer than they are and my heart less frantic than it will be. Few in the crowd of celebrities, photographers, stylists, and designers will know my name, but for 60 long seconds I will be the one everyone is looking at. It doesn’t matter to them who I am, and that’s ok. I’m there to sell clothes.

But I’ll be selling something else, too. I’ll be selling dreams and awareness for those living with incurable chronic diseases.

For the five hours before I take the first bold step on that plank runway I will be backstage interacting with dozens of people – models, makeup artists, hairstylists, designers, stylists, photographers, and producers. Many of these people will see me as another model who wants to make it big in fashion. I’ll be another face to paint, another head to sculpt, another frame to drape and dress. I don’t blame them. That’s why most models walk in big fashion shows – to make it big. But I’m not in this to be America’s Next Top Model.

I’m in this to share my story. I’m in this to bring fashion and sickness together in a powerful way that changes people’s perceptions and awareness of invisible illnesses.

Backstage while I’m getting hair and makeup done, there is plenty of time for conversation. Continue reading Tomorrow I Am Famous →

Charis, family, fashion, fashion show, modeling, sewing

Finding the Maternal Trinity in my sewing machine

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My mother is responsible for this. It’s all her fault. Mind you, I’m not blaming her; I’m giving credit where it is due. In 2005, my mother’s high school graduation present to me was a sewing machine.

I remember being confused, a little upset, and perhaps a bit embarrassed by it. Not the machine, of course, it didn’t do anything to cause me anxiety, but rather the thoughts that intruded my mind when I considered the unspoken suggestion behind the gift – that I would use it.

Continue reading Finding the Maternal Trinity in my sewing machine →