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
About a year ago I connected with the folks of Self Care Catalysts and downloaded their free app, AS Health Storylines (available on android and Apple products), that helps track medication, symptoms, diet, appointments and more. This, and other apps, has helped me – sometimes I need a reminder to take a certain medication; I also like all this information in one place so I can share it with my doctor and disability attorney.
Recently, Self Care Catalysts has also unveiled The Spondy Project, a paid research opportunity for patients with Ankylosing Spondylitis and other forms of Spondyloarthritis. Participants can receive up to $100 for sharing their experiences through an app for up to four months. Read more below to see why I think you should sign up: Continue reading Participate in The Spondy Project. Get Paid.
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
I want to go to the doctor one day and once again check the box on the intake paperwork that says “generally healthy.” The once robotic maneuver of sliding my arm smoothly down paperwork to check off a straight line of boxes is now a chore requiring concentration and an agile hand zigzagging across columns.
Having the opportunity to check that “generally healthy” box would reinstate my self-worth as an able, capable human.
This dream is on my bucket list between trips to Hawaii and Zamibia. But the dream vacations do not get much attention – I’m distracted by the more immediate and unrealistic desire for good health. I’m waiting with open arms, but I don’t expect this invitation will be answered. Continue reading People With Severe Health Conditions Dream of Simple Things
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
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
I grew up privileged – white, yes – but also without ever considering what life would look like if my mother’s job did not provide her and her family with healthcare.
When I had walking pneumonia in fifth grade and was in bed for three weeks, I never considered what it would mean if my mother had to choose what to do or where to seek help if we didn’t have insurance.
When I was on birth control pills in high school, the drug co-pays were predictable. I didn’t fear my medication would suddenly become cost-prohibitive.
When I broke my nose, I never once considered that some people couldn’t go to the emergency room because they didn’t have insurance.
When I was in college I tore my ACL and later broke my hand playing college soccer. My bills were covered. I didn’t know other students didn’t have the healthcare I accessed.
I believed healthcare was something everyone had. If someone got sick or injured, s/he went to the doctor, paid the copay, then went to the pharmacy, paid the copay, etc etc.
I was blindly privileged. Continue reading Healthcare Is a Privilege. It Should Be An Inalienable Right.