Growing up, Charis Hill knew that her father had an illness with a hard-to-remember name that curved his back and left him in chronic pain. But she’d been told this disease only affected men, so she lived her life without concern for her genetic inheritance. A star soccer player in college, she found work as a professional mover, a bicycling advocate, a fashion model — jobs that took advantage of her physical strength and willowy good looks. Then she was diagnosed with ankylosing spondylitis (AS), just like her father. Today she blogs about her experiences, leads her local AS support group, and advocates for the chronic-illness community — including women with AS. Current studies show that more men than women have AS, with some sources claiming the ratio is 3:1, yet that ratio has decreased and is expected to continue to decrease. Charis shares her story with HealthCentral.
HealthCentral (HC): When and how were you first diagnosed with AS?
Charis Hill: I learned I had AS five days after my 26th birthday, in 2013. I had been battling an upper-respiratory bug for months and was having significant trouble breathing. Antibiotics were not helping — in fact, I kept getting worse and became mostly bedridden. I even went to urgent care twice over a two-week period for a pneumonia scare and a heart attack scare, but tests didn’t indicate anything abnormal. On paper, I was the picture of health. In person, I was very sick. When doctors tried to say it was all in my head and give me anti-anxiety medication and antidepressants, I reached out to my estranged father to find out more about our family’s medical history. I knew he had AS, but I never once considered I would inherit it — growing up, I was told it was a man’s disease. His email response still haunts me: “Charis… it sounds like you could have AS… I need you to call me.”
Although I was diagnosed at 26, my symptoms began when I was 13 or even younger. I used to think my growing pains were worse than my peers. I kept quiet about it because I was embarrassed, but looking back I realize this was an early symptom of AS.
HC: You gave a TedX talk in which you call AS “an invisible disease.” How so?
Charis Hill: We live in a world that is so fast-paced, it almost seems that everything is temporary; that if someone is sick today, they should be better tomorrow. I think this attitude causes society to blame people who have a chronic illness. This creates a stigma, leading most people with AS to, well, hide it as much as possible so we can “pass” as functioning members of society. People with ankylosing spondylitis are often in pain 24/7, but we’re also some of the strongest people you’ve ever met with our superhuman pain tolerance and ability to accomplish things with no energy. We didn’t choose to be strong — we have no choice but to be strong, just to survive.
HC: How did your father’s experience with AS shape your perspective?
Charis Hill: Growing up, I saw my father only once a year in wintertime. I struggled to understand why he was hunchbacked but was more curious about how he adapted to his physical deformity. I spent a lot of time practicing (in private) how he would balance on one foot and point the other toe into the ground to pivot his torso backward so he could look at me instead of directly at the ground. I knew he had a disease but I could never remember its name.
My father also smoked a lot and was an emotionally scarred person who handled anger in really unhealthy ways, and I somehow connected that to his disease. When I was diagnosed all I could see in my future was becoming a severely physically deformed, manipulative, violent, and lonely person living in a RV. I am still doing a lot of self-work to believe that my future is completely different!
HC: What have you done to improve your day-to-day life with AS?
Charis Hill: I have learned — incredibly slowly, as I am stubborn — to embrace anything that makes my life easier, no matter how geriatric it makes me feel. I used to believe that using a brace, compression gloves, or a cane would drastically compromise my identity as a young, formerly active person, but I have learned how much more they help me participate in life! I now shamelessly take advantage of any assistive technology, whether it’s special pillows for my bed or a wheelchair at the airport, so I can do more important things with the energy I have.
Another simple thing I do is freeze ready-made food in single portions so I can just thaw and microwave a healthy meal whenever I am not able to spend any energy cooking.
HC: Can you talk about the intersection of AS and mental illness?
Charis Hill: According to the National Institute of Mental Health, people with chronic diseases have a higher risk of depression, and people with depression have a higher risk of developing chronic diseases. Ankylosing spondylitis is a very stressful illness and since people tend to hide it, they are more likely to feel isolated — a common theme for many chronic-disease sufferers — which leads to poor mental health. I live with a few mental illnesses on top of AS, including depression, anxiety, and post-traumatic stress disorder. They all interact with each other and require different approaches to treatment. The challenge is not just juggling medications, but also paying attention to how my physical symptoms are exacerbated when I am having a particularly stressful time mentally, and vice versa. Since my psychiatrist works in a different office than my AS specialist, I often have to be their liaison, which puts a lot of pressure on me as the patient. Sometimes I will get dizzy and it takes a lot of work on my part to communicate with all my doctors to figure out whether the dizziness is a symptom of a medication or an effect of one of my conditions.
Many people do not understand that I also struggle mentally because I can generally interact with people without showing that I’m under psychological duress. It’s hard for me to express that my mind is as broken as my body, and that I often climb right back in bed as soon as I get home to rest my mind as well as my body.
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Pamela Kaufman, a writer and editor in New York City, got her professional start covering health and fitness for Vogue. Learn more about her life as an adventurous eater and mom to two feisty young boys by following her on Instagram @pamkaufman.