Pain Paves an Unlikely Path to Becoming Whole
Charis Hill, 35, delights in wordplay. As a person who identifies as nonbinary and uses they/them pronouns, Charis playfully refers to themself as a “king and queen” of puns. And when the elegant tail of their cat, Juno, flicks in front of Charis’s face, they wryly smile and offer another quip: “I call myself the cat theydy.” Four cats currently share their home, including two former ferals taken in during the COVID-19 pandemic.
The furry housemates are nurturing companions to Charis, who navigates the chronic pain of axial spondyloarthritis (axSpA), a multisystemic inflammatory rheumatic disease primarily affecting the spine and other large joints, and sometimes the body’s organs. In addition to severe joint pain, symptoms include fatigue and limited mobility.
In their blog, BeingCharis (beingcharis.com), they use metaphors to describe the disease’s bodily sensations, ranging from “a pocket of lava explodes in my joints” to “zapped by a live wire.” Charis adds, “There are times that it’s like being stabbed in a joint with a barbed poker.”
FINDING AN ANSWER IN GENES
Psychological pain and invalidation flanked Charis’ decades-long quest for an official axSpA diagnosis. Charis first sought treatment for debilitating lower back pain, a common symptom of axSpA, during their years as a collegiate soccer player. Prior to playing in college, as a person assigned female at birth, they played as the only girl on the high school boys team. However, even after an MRI showed that Charis’ lower vertebrae were starting to fuse, doctors routinely told them that the pain was simply a result of being an athlete. Furthermore, health care providers were particularly dubious on account of their gender. A 2014 study reported that all general practitioners who were interviewed believed axSpA was almost exclusively diagnosed in men.
Charis reflects, “I was socialized as a girl, and was told axSpA was a man’s disease.” At one point as a young professional, Charis struggled to breathe, which they now realize is a response to ribcage inflammation, and was told it was “all in their head.” The doctor prescribed depression and anxiety medicine for panic attacks.
Determined to find an answer for what they knew to be primarily physical pain, Charis heeded intuition’s call and emailed their estranged father to glean more understanding of possible genetic factors, and maybe even uncover an answer. According to a 2020 study, the disease is indeed highly heritable. Their father explained his own symptoms of axSpA, which immediately opened a long-bolted door of understanding for Charis: “I realized that all these separate symptoms I’d had over the years were the same disease.”
FROM ATHLETE TO ADVOCATE
Recognizing the genetic component of their health issues emboldened Charis to press even harder for a diagnosis, a quest that finally gave a name to the source of the pain and knitted together the strands of symptoms. However, to accomplish this feat, Charis needed to draw on their grit as an athlete: “I had to go down the road of convincing doctors that’s what I had with minimal income, very bad insurance, and with the fewest tests possible,” they note. “From the very start, I was advocating for myself.”
In 2013, after a rheumatologist officially diagnosed Charis with axSpA, they felt grateful but “gutted.” Within two years, on account of increasing symptoms, Charis sought and was eventually granted disability benefits. In spite of experiencing pain since youth, they had always identified as an athlete, which helped them cope after the diagnosis. While initially shaken by this new aspect of their identity, Charis soon experienced a metamorphosis, a strengthening, of voice and purpose, and even an epiphany—they had been unknowingly preparing for this ever-arduous trek their entire life.
While Charis recognizes that pain paved their path, they are now in an unexpected role: fierce advocate for disabled people. As a writer, speaker, and activist, Charis fights to dismantle the current ableist paradigm. Speaking softly but with a firmness that reveals steely focus, they say, “The disability process is dehumanizing, forcing you to define yourself by everything that you cannot do.” Part of Charis’ mission in becoming anti-ableist is to embrace a proud disabled identity. “So many disabled people will not reach that first level of Maslow’s hierarchy of needs [physiological; the most basic needs a person can have]. To consider the hypervigilance, the fight or flight, that’s been forced on us by negligence of government policies is infuriating.”
ILLUMINATING VULNERABILITIES TO INCREASE POWER OF AWARENESS
Charis continues to act to use their power to spearhead awareness and change. In their work, Charis refers to the social model of disability and pinpoints how society creates obstacles for equitable movement through the world. Charis believes, for example, the current medical model works in a way that blames the individual for not being able to climb the metaphorical stairs in front of them.
Today, Charis serves on several nonprofit committees, including CreakyJoints, part of the Global Healthy Living Foundation; Spondylitis Association of America; and the National Pain Advocacy Center. In addition to striving to expand awareness of axSpA and improve disparities in health care, Charis is an advocate for the nonbinary and transgender community. Since coming out as nonbinary in 2019, they have personally experienced ignorance and carelessness from medical professionals in recognizing their identity. They share, “My clinical notes are a mixture of misgendering and appropriate gendering, which feels awful.” Charis also references the mental fatigue of deciding when to correct health care providers in an already vulnerable space.
CHALLENGING DISABILITY MODELS
Charis continues the search for well-being and dignity for themself and others, redirecting the societally accepted and flawed framework of disability by channeling focus on a person’s capabilities rather than limitations. Charis’ own life is a testament of approaching their disability on their own terms. They share that not only do they use braces, a coccyx cushion, cane, rollator, or wheelchair when needed, but also that they proudly use these resources.
Prior to the pandemic, Charis lived an adventurous life. They modeled for three years for Tumbler & Tipsy in New York City and for Fuschia Couture in Los Angeles Fashion Week; attended Burning Man—where, at times, friends pushed them in a wheelchair through the fine dust of the desert; and even interviewed Dan Reynolds—the lead singer of Imagine Dragons, who also lives with axSpA—for their blog. Now, sheltering in place since February 2020, Charis funnels their creativity into their home and nearby community in Sacramento, California. They have become an urban homesteader, aiming to grow or create, rather than purchase, all that they consume.
A brown-bag chandelier of sorts hangs in Charis’ home, each parcel containing dried herbs ranging from citronella to sage. Their newest project is growing alfalfa to provide hay for the neighbors’ chickens. Charis refers to gardening as their form of meditation and estimates they’ve put in 10 or 11 miniature fruit trees, including peach, lemon, plum, and cherry. Their yard is an example of regenerative landscaping, an intentional type of cultivation with an objective to restore nutrients in the ground, provide shade or food, and attract pollinators.
As Charis considers the garden, they smile: “It all serves a purpose.” Fitting words for how Charis shows up each day—broken, whole, and proudly disabled.