Living with Ankylosing Spondylitis | This AS Life

I can’t plan as much as I could before I was diagnosed - I end up cancelling – but, when I do schedule something really special, I do everything I can to save my energy for it. Just having something to look forward to can do wonders.

Having something exciting in my diary gives me a boost of energy and helps me feel control over some aspects of my life. “Ha! See? I can still do things!” I want to be able to look back when I am older and say, "I had moments of joy, look at these wonderful memories and connections I created! And I raised awareness while I did them."

Walking the (cat)walk

What I ask of others is that they follow their dreams; so it is only fair that I follow my own when they come knocking. It just so happens I’m a model. While this seems an odd hobby for someone with ankylosing spondylitis, in a sense my painful back helps me on the runway: with a rigid spine and my shoulders thrown back, no one has to know my perfect posture is because I don’t want to fuse like the Hunchback of Notre Dame.

I do feel as though I have snuck into a world I shouldn’t be in; if designers saw what my spine was doing inside that dress they’d probably kick me out. It feels sneaky, but modeling is really just a revolutionary way of reminding people that I don’t have to look sick to be sick. If you want my image, you get the whole package.

“I don’t want to simply survive; I want to participate fully in life!”

Recently I was given the opportunity to model in Los Angeles Style Fashion Week. I said yes. I said yes because walking in a fashion show in Los Angeles is the real deal – career models dream of big shows in Los Angeles, New York, and Paris. This show suddenly became a new dream for me; one I never expected to have.

I couldn’t say no but I was terrified of the energy it would drain, the fatigue it would cause, and the pain I would have to push past. I knew I could get through the show on adrenaline but what about the travel there and back? Would that push me over the edge?

Model behavior

There are accommodations I have to make when I model. I am learning better how to "save spoons" for the days I have fashion shows, and getting better at putting a big ‘X’ on my calendar for several days after each show to recover.  Adrenaline gets me through the shows, then a lot of rest helps me recharge. 

I have a set routine and a checklist for the times I model. Bring a pillow for my back while people are doing my hair and makeup. Bring plenty of pain medication. Ask to arrive later than other models so that I can rest longer beforehand and be on-set for less time. Say no to after-parties unless I have planned ahead to attend. Drink more water than I want so I am hydrated, so my joints are better lubricated (and so I have to pee a lot - which keeps me moving). Wait until the very last minute to put on heels and wear the most comfortable (and lowest) allowed for that show.

“Just having something to look forward to can do wonders”

Challenging myself, defying AS

Modeling is a temporary escape from my body. Actors perform, many of them for the thrill of being able to temporarily inhabit the life of another person, to adopt a persona that provides an imaginative, temporary space away from the harsher realities of life. That's what modeling does for me.

The truth is, I’m scared every time I chase a dream. But I do, and I make the necessary accommodations along the way so that I can succeed. I want memories to look back on that aren’t selfies of my pale face in bed. I don’t want to simply survive; I want to participate fully in life!

Every day that I manage to do something I enjoy, I prove AS is not winning. I will not let my poor health keep me from participating in my life with ankylosing spondylitis.

Charis recently walked for Fuschia Couture by Liliana Chavez-Cardona (who has Rheumatoid Arthritis) on the Los Angeles, CA Style Fashion Week runway at the Pacific Design Center Saturday, March 19th, 2016.

 

 

This article was written by Charis Hill, with help from the resident experts at ThisASLife.com. A social site helping the whole AS community to: Learn. Share. Inspire. Discuss.

 

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MEET CHARIS

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Charis
Hill

AS Patient

Charis Hill is an active advocate for arthritis, autoimmune and chronic diseases. She was diagnosed with AS in early 2013, and now leads the Spondylitis Association of America Support Group in her local Sacramento, California.
She works as a fundraiser, event planner, and valet bicycle parking lead for Sacramento Area Bicycle Advocates, and is also a professional model.

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