Tag Archives: Charis Hill

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 →

ankylosing spondylitis, Heroes

I Talked with Zach, the Try Guy with Ankylosing Spondylitis (Part II)

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Since Zach’s vlog announcement of his Ankylosing Spondylitis (AS) diagnosis in September 2017, the video has been viewed over 4.9 million times (as of time of this publication).

In part one of this series I talked about Zach’s story’s impact, the validation that came with his diagnosis, and lessons learned living with a disease that is always beneath the surface.

In part two I dive deeper into Zach’s decision to announce his diagnosis on YouTube, his approach to coping with AS, and whether he calls himself an advocate. Finally, I’ll share his exclusive message to the AS community.

Before I continue, I want to clarify that I am neither doctor nor medical professional. None of the following should be taken as diagnostic, medical or treatment advice. Please consult with your physician before starting, stopping, or changing treatment.

Let’s get started.

Why the video? Continue reading I Talked with Zach, the Try Guy with Ankylosing Spondylitis (Part II) →

ankylosing spondylitis, Heroes

I talked with Zach, the Try Guy with Ankylosing Spondylitis (part I)

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When Try Guys member Zach Kornfeld announced he has Ankylosing Spondylitis (AS) in September 2017 I was so relieved.

I know what you’re thinking. Relief sounds super self-centered, so let me say right now that I was also really sad for Zach’s diagnosis; I wouldn’t wish Ankylosing Spondylitis on my worst enemy. But when you live with a common-but-unknown disease, awareness is what you live for.

Well, it’s what I live for anyway. And when a celebrity makes an announcement a lot of people pay attention.

Zach’s video marked the second “Ankylosing Spondylitis coming out” by a celebrity figure in two years (Dan Reynolds announced his in 2015) and it made a big splash in the AS community. Spondylitis Twitter was buzzing. Spondylitis Facebook and Instagram were buzzing, etc etc. It was exciting to see someone talking frankly about AS to a really large audience (as of April 27, 2018 the video had nearly 4.9 million views). Zach was telling all our stories by telling his own and we clung to this moment as a chance to be seen and heard.

Here, let me lay this out for you better.

Ankylosing Spondylitis is an immune-mediated inflammatory disease that can progressively damage joints in the body, especially in the spine, and in some cases cause the spine to fuse into a column of rigid bone. Additionally, AS is a systemic, or whole-body, disease; so it can cause fatigue, cognitive impairment, sleep impairment, and damage multiple organs in the body. There is no cure, so the goal for treatment is to reduce inflammation to slow the progression of the disease and manage symptoms.

Many of us who have AS had never even heard of the disease before a doctor sat us down and opened their mouth to a flood of slow motion gibberish, “You have A n k y l o s a u r a s d i n o s a u r S p o o n d a c t y l a u r u s B l i b b i d y B l o p p i d y B o o.”

Then, as if our disease isn’t hard enough to pronounce, our own friends and family struggle to even understand what we’re experiencing and that it’s serious. And a lot of general practitioners have already forgotten the one paragraph about AS they read during medical school. There are even rheumatologists (the specialists who treat AS) who refuse to diagnose women. More about that another time.

And yet AS affects so many people. Ankylosing Spondylitis falls under an umbrella of diseases called Spondyloarthritis, which affects an estimated 2.7 million people in the USA alone. That’s more than Amyotrophic Lateral Sclerosis (ALS)/Lou Gherig’s Disease, Multiple Sclerosis, and Rheumatoid Arthritis combined. Estimates vary regarding the number of people specifically with AS in the US, but it is the most prevalent type of Spondyloarthritis. That’s a LOT of people.

I wish nobody had AS, but since a lot of us do and we largely suffer in silence, Zach’s video was cause for celebration – not for his being diagnosed, but for his willingness to talk about it in front of millions of people.

When I saw his video I knew I wanted to help his story reach more people. I knew I wanted to talk to him.

So six months later I reached out to him about a chronic disease documentary I’m in (shameless plug) and it turned into a Skype interview.

Continue reading I talked with Zach, the Try Guy with Ankylosing Spondylitis (part I) →

Advocacy, disability

I Told My Story at the 2018 Women’s March in Sacramento

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Below is a video and transcript of the speech I gave at the 2018 Women’s March in Sacramento. The current video may be updated with an official rally video after it is released.

(Video courtesy of Darcy Totten, Activism Articulated)

Sacramento!!!

My name is Charis.

Five years ago I was asked to testify on a bill and I said to the person, “I am nobody, how can you expect me to say anything to convince these lawmakers to choose the right thing?”

She said, “Charis, all you have to do is share your story. Nobody can tell your story for you.”

Sacramento! Can you share your stories? That’s all you have to do.

I’m a former college athlete. I graduated magna cum laude from a women’s college and I paid off my college loans in 6 years. I could do anything!

But.

Then I was diagnosed with Ankylosing Spondylitis. You can’t tell because I’m hiding the pain, but Ankylosing Spondylitis hurts like hell and my body’s working overtime just to survive. I also live with Post Traumatic Stress Disorder, Depression, and Anxiety.

In 2016, I made the hardest decision of my life. I applied for Social Security Disability. Now, two years later, I am still waiting for a decision on my case. For two years I’ve been surviving on savings and occasional financial help. But with Sacramento’s rent rising astronomically and my savings and health in decline, my future is uncertain at best. Continue reading I Told My Story at the 2018 Women’s March in Sacramento →