Category Archives: invisible

What I Wish You Knew About Living with an Invisible Disease

You may look at my young, healthy-appearing body and ask, “You’re sick? Why don’t you suck it up and try harder? Why haven’t you tried XYZ?”


What you see is the poker face I’ve spent years creating, the one that allows me to pass in an able-bodied world so I don’t spend every moment defending my disease to faux-cure-evangelists.

What you don’t see is that I’m faking health to preserve my dignity, energy, and ability to accomplish whatever task it is I have to do before I collapse. Faking it is hard, but it’s easier than displaying my pain and then having to use more energy to defend my body’s permanent sickness.

What you don’t see are the grimaces I make when I’m in a safe place, when I allow myself to actually respond to the pain that is unrelenting, the pain that I do my best to ignore in public.

What you don’t see is the fear underlying my existence. Will I die young? Will I lose healthcare? What if my disability is denied? Will this new treatment work? Will I become homeless? Will I find a forever partner?

Continue reading What I Wish You Knew About Living with an Invisible Disease

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I Wore a Blindfold and Asked People to Write Their Pain on My Body. This Is What Happened.

If you don’t already know, pain is a deeply personal subject for me. I have been fighting ankylosing spondylitis (AS) since 2000, since I was 13. AS is an often-invisible, progressive disease that attacks joints of the body with painful inflammation. In severe cases, it can cause bone spurs to grow that can fuse the spine into a single long column of bone. AS can also damage multiple organs, including the intestines, liver, kidney, lungs, heart, and eyes. There is no cure.

I have made it my mission in life to do something about that ‘no cure’ part by raising awareness in all the ways that I can. I have been on the news, written articles, interviewed celebrities, represented patients at conferences and meetings, given speeches (including a TEDx talk), and testified in state legislative hearings and with members of Congress on Capitol Hill.

Recently I became a performance artist, too.

Each month, Crocker Art Museum in Sacramento, California hosts a themed ‘ArtMix’ night. In August 2017, the theme was Combust, inspired by Burning Man, and I was granted permission to be an interactive art installation. I named the piece ‘My Body the Temple,’ inspired by the Temple at Burning Man.

I wore a bikini, sat on a stool, blindfolded myself, and offered people the opportunity to write their invisible pain on my body.

Island
Image by Rich Beckermeyer, Rich Beckermeyer Visuals

Continue reading I Wore a Blindfold and Asked People to Write Their Pain on My Body. This Is What Happened.

Talking Ankylosing Spondylitis with Imagine Dragons’ Dan Reynolds

I don’t always interview rock stars – it’s not really my thing. But this day was different. This was personal.

It was a chilly morning, much too early for my stiff body to roll out of bed. But this was a big day – I would soon be interviewing Dan Reynolds, the lead singer of Imagine Dragons.

“This wouldn’t be happening,” I thought, “if we didn’t share a wicked diagnosis.”

In late 2015, Dan announced during a show that he lives with Ankylosing Spondylitis (AS). A year later, he partnered with Novartis Pharmaceuticals Corporation and the Spondylitis Association of America to launch This AS Life Live!, an interactive talk show for and by patients living with AS.

Before I keep going, I want to express how lonely it can be to trudge through life surviving a disease that people do not know about. I spend substantial time and energy educating friends, strangers, and even doctors about my condition, which leaves little room for receiving compassion and empathy – like the supportive gestures people usually offer to someone who has a disease in the limelight. Everyone knows cancer is bad, but AS is not a well-known disease, so for a celebrity to name it on stage is life-changing. Continue reading Talking Ankylosing Spondylitis with Imagine Dragons’ Dan Reynolds

A New Wheelchair User’s Experience at the Women’s March

The first time I used a wheelchair was after tearing my ACL during a college soccer match in Washington, D.C. in 2005. My teammates convinced me to use one when we visited the Holocaust Museum, instead of crutches. I remember feeling invisible. I remember being trapped in the middle of congested hallways and exhibit rooms, seeing nothing but the backs of people scooting around and in front of me like I was a planter box in their way. I remember feeling empathy for people who spend a majority of their lives in a wheelchair. I hardly remember anything about the museum from that visit. And I became terrified of ever needing to use a wheelchair again.


On January 21st, 2017, I rolled in the Women’s March on Sacramento alongside some 30,000 people. I have only recently, very reluctantly, decided to begin using a wheelchair because of deteriorating health. My experience from college still haunts me, but I am learning to embrace how much more fully I can participate in life by using assistive devices that reduce pain and fatigue caused by Ankylosing Spondylitis. It’s the difference between staying home and showing up.

However, I was nervous about navigating the march, even with friends to help push me. I expected that I would spend all my energy advocating for space just to be able to proceed in a straight line. I thought I might regret the decision to use the chair, even though not using it could result in being bedridden for days or weeks.

Would I return home wishing I had not gone? Continue reading A New Wheelchair User’s Experience at the Women’s March

“An Invisible Disease” – my TEDx talk

In September, I had the honor and privilege of giving a TEDx talk just two weeks after my father died from Ankylosing Spondylitis, a disease I inherited from him. I am so grateful for having this platform to share via the Sacramento TEDx Changemakers series.

I hope you’ll watch and share this video to raise awareness about living with chronic illness, but I also hope you’ll take something away for your own journey.

Click here to watch the 8-minute video:

An Invisible Disease : Charis Hill : Sacramento TEDx Salon


Dear Gate Agents and Flight Attendants, From People Who Don’t Look Disabled

Dear gate agents,

I’m one of those passengers who shouldn’t be in the pre-board line.

You know the ones.

I’m dressed nicely and I have makeup on; I appear healthy and able-bodied. I don’t use a wheelchair. I’m young. I sometimes sit on the floor and stretch. Aside from my pillow and sometimes my cane and wrist braces, there is not much evidence pointing to a broken body. According to popular opinion, I don’t look disabled.

You want to do your job well, and part of that is accommodating people with disabilities. But often, when I request a pre-board pass, you look at me like maybe I’m cheating, like maybe I learned a trick somewhere just to get a better seat or not wait in line. Maybe you think I’m smug or even entitled. Sometimes you question if I need the pre-board pass on the basis of disability right after you sweetly, wordlessly hand one to the woman in front of me Continue reading Dear Gate Agents and Flight Attendants, From People Who Don’t Look Disabled

Repealing Obamacare Could Kill me

The Affordable Care Act (affectionately termed Obamacare) is likely to be repealed in a few months.

I’m told personal stories are powerful, so I want to share mine.

I was always going to be healthy. Aside from a slight concern when I quit a job that offered health insurance and took another job without it, I never once considered I would need a team of doctors. I boast a background as a college athlete, professional mover (yes, heavy furniture, etc) and otherwise health-aware person.

But my body lied to me.

Nearly four years ago, I was diagnosed with Ankylosing Spondylitis, a severe disease that causes rampant and painful inflammation in the spine and other joints in the body, sometimes leading to the growth of bone spurs that fuse spinal vertebrae and hips. I wasn’t diagnosed by a healthcare provider at first – I found out I inherited this disease from my father after matching our symptoms.

Four years ago, I had a dilemma. Continue reading Repealing Obamacare Could Kill me