August 5, 2014

Pedaling Through the Pain

For Charis Hill, movement is crucial and her bike is central to this need.

You would never guess by watching Charis Hill artfully strut down the catwalk this past February, as a new model for Sacramento Fashion Week, that she is anything other than a beautiful young woman in her prime. Nor would you guess, if you caught sight of her biking daily to her jobs at Sacramento Area Bicycle Advocates and the Sacramento Region May is Bike Month Campaign for the Sacramento Area Council of Governments, or to various modeling casting calls, that she is anything but completely healthy. You would be wrong. Charis Hill is a young woman dealing with a rare and very painful form of arthritis called Ankylosing Spondylitis (AS).

For Hill, movement is crucial and her bike is central to this need. Being on her bike daily, she said, makes her feel powerful, independent, and in charge when in reality, dealing with such a challenging disease, she knows she isn’t. She understands that with AS she has to keep moving if she wants to be able to keep moving later today and in the future. The most challenging time for her body is at night – while she sleeps is when most of the damage occurs.

AS is such a rare form of arthritis that Hill is often the one who shares updates on research with her physician rather than the other way around. “Advocate” is not really a word she has applied to herself in the past, whether for biking or anything else, but she is getting more comfortable with the label – for her own health opportunities and those of others.

This past March she joyfully experienced DC via bike share after eloquently testifying to members of Congress in Washington as part of the National Arthritis Foundation’s annual advocacy summit.

At 27, Hill knows she is a bit old to be entering the modeling world but is taking a fresh approach that illustrates she’s in charge of her own body. This new, side career could become a positive platform for sharing her active living message. Her attitude is quickly gaining her fans and followers. Fellow models, casting agents, and photographers are first surprised then very impressed when they realize she showed up to a casting call or photo shoot by bike.

Hill began her life as a freerange kid on two wheels when her mother set her loose on her first bike around the age of five. It is that early independence that she feels serves her well throughout many aspects of her life today such as being an active advocate, arthritis spokesperson, and now a model.

“My bike is a huge reason why I’ve been so motivated not to surrender to my disease, to keep moving forward, and keep sharing my experience,” said Hill.

3 Ankylosing Spondylitis Quick Facts

Ankylosing Spondylitis is a chronic, inflammatory disease that primarily affects the sacroiliac joints (where the spine attaches to the pelvis), spine, and hip joints. Low back pain and stiffness in AS patients are worse after a period of rest or upon waking and improves after exercise, a hot bath, or a shower.

AS affects every body differently and is difficult to diagnose.

In addition to exercise, AS can be managed (but never pain-free) with certain medications.

Spondylitis Association of America spondylitis.org | Arthritis Foundation arthritis.org

Melissa Balmer is a writer, speaker, media specialist, and the Director of the Women on Bikes California.

pedallove.org

12 Comments

Danny Wade
August 9, 2014
Well this is awesome. Biking everywhere has helped control my AS more than anything else I’ve tried (partly because you can’t get around town by swimming). I started riding everywhere in 2008 and went off antiinflammatories very shortly thereafter. It became possible to go camping again, which made it possible to go for rides that can stretch on for weeks. My advocacy doesn’t extend far beyond telling people with AS to get a bike and ride it. I thank you for your efforts, both as a fellow person with AS, and as a fellow bike junkie. There’s no amount of pain in riding that’s worse than what we’d get if we stayed home.
- Charis Hill
  August 10, 2014
  Thanks, Danny. You hit the nail on the head with “There’s no amount of pain in riding that’s worse than what we’d get if we stayed home.”
Patrick Jones
August 8, 2014
I’m 61 and was diagnosed with AS at 25. Activity and exercise, along with many other things, are crucial to my health. Bicycling is not only my transportation it is my life.
Melissa
August 6, 2014
Charis, thanks for talking publicly about these challenges. I recently spent some time biking with 17 year-old Bethany Catlin (http://www.bethanywhere.com/), who rode 700 miles to raise money for arthritis research. Bethany has Juvenile Idiopathic Arthritis. Although most of us “know” that even people who appear healthy and fit may be dealing with chronic conditions, it’s something that’s easy to forget in our daily interactions. And, of course, no one wants to be defined by their disease. It’s good to see stories like this to inspire us all to take charge of our own health issues and to remember that you never know what the cyclist next to you is dealing with.
- Charis
  August 6, 2014
  Melissa, I’ve found that by sharing my story it gives me the strength and hope to continue fighting. There is so much misunderstanding and nonacceptance for chronic conditions – you really don’t know what it’s like unless you’re living it. Thank you for pointing that out. I’m glad this inspires you; in turn, knowing that inspires me to keep plodding along.
Steve Kayner
August 5, 2014
Taking charge of your disease and thus your life is a strong message for others who face similar challenges. I hope this momentum you’re generating carries you a long, long way and continues to inspire many others to keep moving, too.
- Charis
  August 6, 2014
  This is a battle I will fight my whole life – so the more vocal about it I am, the more in control I feel. By letting my light (and pain) shine, I allow others the freedom to do so as well. Thanks for your support. Keep moving.
  - venu
    September 11, 2017
    Hill, i am also cycling enthusiast, suffering from cervical spondylitis, its in initial stage. not severe. but i feel uncomfortable in the base of the neck. since last 5 months i haven’t taken out my bicycle. i feel very down. doctor told not to ride till the pain subsides.