Tag Archives: rheumatoid arthritis

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 →

Advocacy, Arthritis, chronic disease, chronic pain, Invisible disease, Patient Advocacy

There Are Worse Things Than Cancer

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This will anger a lot of you.

It angers me, too. Likely because we don’t think about what we don’t already think about – that is, what we already know to be true. We’re good as humans at remaining steadfast in our knowledge of, well, what we already know. If you believe something to be true and then you are exposed to new information that may invalidate or challenge what you know, you can be thrown off your rocker.  Ignorance is bliss, but in no way is it a ticket out of learning and having your eyes opened. Sometimes growth – learning – hurts. A lot. And makes you angry.

That being said, are you ready to get angry? Ready or not… Continue reading There Are Worse Things Than Cancer →

#sickbody, Advocacy, ankylosing spondylitis, chronic disease, chronic pain, disability

When you see me I’m acting

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When you see me in public I’m putting on a show. Curtains and…action. Seriously. All the world’s a stage.

Especially when you’re sick. And I mean sick.

Whether you have cancer, ankylosing spondylitis (AS), multiple sclerosis (MS), lyme disease, amyotrophic lateral sclerosis (ALS), fibromyalgia, gastroparesis, vitiligo, rheumatoid arthritis (RA), depression, anxiety, post-traumatic stress syndrome (PTSD), etc etc etc, or a mix of more than one extreme disease, you’ll probably relate to the desire for “normalcy” in this post.

Continue reading When you see me I’m acting →