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.

But anyone who knows me knows I’m not known for my conformity, so it wasn’t long before I was being myself.

I began talking about my disease.

And I learned that by sharing my story of living with AS backstage, it gave others permission to share theirs with me of living with Lyme disease, Rheumatoid Arthritis (RA), Sickle Cell Anemia, Multiple Sclerosis (MS), and more. Modeling became a physical platform for sharing my story, representing others with chronic diseases, and empowering others – in and out of the fashion world – to share their own stories, whether individually with me or with larger audiences.

Casting Call

So when I was invited to model during New York Fashion Week I searched for reasons to say yes. With my health the way it is – I’m disabled and live with constant debilitating significant pain and fatigue – I knew it was a risky decision to fly to New York right after Burning Man, an event I attend every year.

I did try to say no.

I really did try.

See, when my friend Latiya invited me early on to model with my wheelchair in her show in NY, I said yes immediately. There was no way I could refuse the opportunity to normalize the runway by using a wheelchair on it. However, the show producers refused to allow my chair on the runway, so I decided not to go. I had no energy to go head to head with the producers over their discriminatory decision.

See? I tried to say no.

But I couldn’t stop thinking about New York Fashion Week, so when Latiya contacted me three weeks before the show to say a model had dropped out, I reconsidered, even though it would mean walking the runway rather than rolling.

It should be noted that I’m an unbelievably stubborn person; I put a lot of energy into ignoring red flags regarding my health. So, even with overwhelming evidence pointing to “Don’t DO IT CHARIS,” my stubborn logic won: Say yes, reap the rewards, suffer the consequences later. Besides, if I said no this time, would my body even give me another chance?

I said yes.

More about Latiya, because her story is amazing: she’s is a single mother originally from Chicago, a Muslim convert who saw a niche market for her designs. Her vision of fitted covered fashion for all is bold and she believes in it with all her heart (not even exaggerating). I have modeled for American Umma (Latiya’s brand) in several shows, but this was her first time showing in New York.

A few years ago during Sacramento Fashion Week, when I first met her, she balanced her sewing, fittings, and rehearsals with the significant time and energy she spent caring for her youngest child, an energetic teenager named Lance, who lives with significant disabilities.

Saying yes to Latiya allowed me to pursue an additional opportunity in New York: to represent my entire community of people with AS on a big stage.

That opportunity was named Michael Kuluva. I reached out to say I would be in New York during his show and I was invited to be one of his models alongside personalities like Miss Betty, Amanda Lepore, Mirai Nagasu, and more.

Michael is a former professional figure skater who learned he had Rheumatoid Arthritis (RA) during fashion design school, when he was 28. Many of the clothes he designs through his brand, Tumbler & Tipsy, are accessible for people with arthritis and other mobility challenges and almost all of the items are so comfortable you feel like you’re in your pajamas all day.

Shortly after his fashion career kicked off, Michael partnered with CreakyJoints, an arthritis organization that now presents his annual show in NY. As one of his models, I would have a unique opportunity to work with him and with CreakyJoints to raise awareness of our respective forms of arthritis.

Partnering for awareness meant features, articles, and video interviews (linked at the bottom of this post) about chasing our dreams while living with AS and RA, and for me it meant reaching more people while doing something I enjoy.

It didn’t hurt that brushing shoulders with famous personalities meant my advocacy might rub off on some of their followers. You can call it advocacy by celebrity proxy: if I was lucky, because Amanda Lepore has 330,000 followers on Instagram, I might reach .03% of them by posting a picture of us together.

When I flew across the country to New York on a Friday morning I had not yet fully grasped the significance of what I was doing. It was only after I landed and caught a Lyft to my friend Sal’s studio apartment – by the way, she also has AS – that I realized the significance of representing people with Ankylosing Spondylitis during NY Fashion Week.

It’s so easy for me to get in the zone of just getting things done and processing them later that I can forget what I am actually doing in the moment.

I know. I KNOW. That’s not what I preach. But there’s my confession – sometimes I’m too busy living to realize I’m living while it’s actually happening. But here we are, I’ve written this thing and it feels like I’m still living it.

Show Day

Backstage on show day was extremely fast-paced and high energy: it was efficient, the opposite of what I’m used to. All I had to do was arrive on time, ready to model. My body was grateful not to be waiting all day in a cold warehouse with nothing to eat (many shows are like that). I slept in, took my time waking up, and spent less time and energy overall doing the actual work of modeling.

People told me where to go and what to do next. I snapped about five pictures backstage for social media, had no time to drink water, forgot to pee, and thought more about the chronic dark circles under my eyes (thanks AS) than about my nonexistent nerves.

However, that fast-paced environment was anxiety-inducing. I had to be on my toes, and every direction I looked something different was happening. I discovered how much multitasking truly takes place during a highly efficient fashion show. If you’ve ever rubbed your belly and patted your head at the same time you’ll understand: one person was doing my makeup while three people were painting my nails.

Showtime struck and I walked in front of celebrities, press, and other influencers in the highest heels I’ve ever worn (ouch). Two people helped me change three outfits in about 30 seconds each for a 15 minute show in which I walked down the runway 4 times.

Say that three times fast.

The rest was pure adrenaline, great medications, and as much water as my body would take in immediately after the show.

I remember thinking to myself,

“None of these people know how much pain I’m in right now. They don’t how much pain I’ll be in tomorrow or the next day or the rest of my life. They only see a model with dark circles under her eyes. And that’s ok. Because I’m not just any model – I’m a model working to make AS a household name.”

On the red carpet after the show, Michael and I had an interview, so while a majority of the other models were undressing I was posing on the step and repeat with Amanda Lepore before the interview.

“How on earth did I get here?” I wondered while dozens of cameras suddenly swarmed five feet away. My pain was creeping into consciousness now that the actual show as done. When a photographer gestured me out of the way so he could take pictures of Amanda Lepore alone – “Ah, yes, I don’t belong here!” I laughed inside, “Get me out of these heels!”

The Real Behind the Scenes: The Day(s) After

Two days later, I was back home and in bed thinking about my dirty dishes and the groceries I had no energy to shop for, back in my normal life. My adrenaline was gone. I’d slept off the endorphins. My back realized what I’d done to it. I could barely move – my whole body was stiff and angry, and I could barely wake up from the fatigue.

I was angry that I had, yet again, pushed my body harder than it can handle.

But in the same moment I knew I would do it again.

I model for something bigger than myself; I model to build name recognition for a disease that, while not rare, is largely unheard of. There’s a different kind of confidence and drive that comes from representing millions of people whose pain and fatigue needs to be heard. When I’m on the runway, I’m not there to impress anybody. I’m not there to walk for me. I’m not trying to land a big contract or sign onto a big label (although that would be nice). I’m there for my community.

I made a decision early on to speak for others for as long as I can or as long as I am needed because, while it drains me and probably shortens my life span, advocacy is also the reason I keep living.

For My Followers

My message for anyone reading this, whether you’re sick or healthy or somewhere in between, is this: no matter your story, your pain, your losses or gains, you must find a way to live into yourself.

I’m not an optimist, I’m a realist. Which means I don’t sugarcoat what I live with. I don’t hide behind a façade of health. I’m open about the pain and the fatigue – it f**king sucks. But I’ve also found a way to live, not just survive, in between the parts where it truly feels like I’m dying, and I’ve found a way to make my disease visible even while doing things I enjoy.

I never planned on being a model. I never planned on having a popular blog. I never planned on being disabled. But in those contexts I found a platform for myself, a way to live into a passion.

So my hope is that you find a passion to live into – it may not be your first dream, or your second, or even your 18^th dream, but if you find something that gives you a spark and a reason to keep going, grab onto that thing and hold on for dear life.

Literally.

Find the thing that makes you feel alive, whether it’s reading, listening to music, being with friends, modeling, creating art, running, or karaoke or going to Burning Man. Find the accommodations that make that thing work for you. Do it when you can, how you can, for as long as you can. And when you can’t anymore, remember to save the pictures so you can look back on what you did and say,

“I did this. I made a choice to live while I could in the body I had for as long as I had it. I lived, not just survived.”

And when you find that thing (maybe you’ve already found it), tell me about it in the comments below. I want to hear what makes you tick, and I want to read your story, because no one can tell your story for you.

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­­­­­­CreakyJoints is a nonprofit dedicated to raising awareness and doing advocacy work in the field of arthritis. I am a member of their Patient Council, a group of advocates from across the country who help guide the organization’s work.

Learn more about CreakyJoints HERE.

Learn more about Michael Kuluva HERE

Watch the full Tumbler & Tipsy S/S 2019 show on Everyday Health’s Facebook (recorded live)

Watch a conversation with Michael and Charis on HealthCentral’s Facebook (recorded live)

Watch two videos by Healthline with footage from the show and interviews with Michael and me: Michael’s feature, Charis’ feature

Learn more about Ankylosing Spondylitis.

Some of my modeling portfolio can be found here (it’s always a work in progress)

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