Why I'm An Arthritis Advocate
"What a time to be alive" is my official motto of 2020. The super-utility infielder of sayings, it works for triumph, pleasure, and excitement, but somehow manages to carry calamity, numbness, and despondent existential angst. We have a winner! It also fits for arthritis advocacy, but for mostly good reasons.
How I got going
I was diagnosed with AS in 2002, after about a year of symptoms. My GP and rheumatologist worked together for my diagnosis. Both were caring and compassionate, but had little to offer me besides some pamphlets and hand-me-down treatments. My diagnosis was the first step of my trip out into the spondyloarthritis dessert, without support.
I believe that this is the best time in history to be working in the spondyloarthritis space. Clinicians have helpful treatments, with promising options on the horizon. Patients and advocacy organizations make fruitful partnerships for research and awareness. Most interested parties are using communications technologies for a public health engagement and representation renaissance. All of this adds up to a golden age of spondyloarthritis advocacy.
Have you ever been for a car ride with elders that keep exclaiming with wonder that wherever you're at used to be all farmland or vacant lots? That's how the spondyloarthritis space used to be, closer proverbial farmland and vacant lots than the bustling city it is today.
We used to be on our own, especially Black women
There was a time when our patients were pretty much on their own, without diagnosis-specific treatments, few support groups, and limited diagnosis awareness. When I was diagnosed there was no space for the concerns of Black women in the limited existing community. Our inquiries about the status of research for our demographic was considered divisive, even though our outcomes lag well behind the expected benefits of treatment advances. I was essentially pushed out into the spoonie sea to sail the choppy waters with "those other" patients.
These days, we have a wealth of personal platforms providing direct access to the public, to tell our stories on our own terms. That's how Creaky Joints and The Spondylitis Association of America found me. And that's how the advocate I'll always bow down to found me! Ms. Christi Taylor-Gentry, the founder of what's thought to be the world's only support group for Black women with AS slid into my Facebook DMs! That's a story for another day, but these relationships allowed me to start attending conferences, and buttonholing researchers, demanding to know what they're doing for Black women and all of our people.
What I do
A lupus friend introduced me to The Spoon Theory, and that got me started trying to help any rheumatology patient I met. A different friend talked me onto Twitter in 2011. I started Spoonie Chat in 2013, eventually circling back to the spondyloarthritis space once I was invited in, in 2016. Did you do the math? That's about nine years all alone. My goal is to become what I needed through participating in writing, Twitter, research, patient engagement, and press availability. Every day, the young woman I used to be, the one offered a stack of pamphlets and little hope keeps me going.
Are you an advocate?
Do you use the word disability to describe your AS?