What I've Learned From Writing About AS Online
As a writer who shares a scary amount of personal information all over the Intenet, one of the most powerful things I've realized along the way is that people are hungry to connect, to understand, and to be heard. We may all be different and come from different backgrounds, but when it comes to pain and fear, we're more alike than we know. And there's a weird comfort in that.
Of course, the Internet is also vicious. People will shame you, blame you, send you dumb suggestions like, "have you taken a multivitamin?" or "you should try this DNA activation meditation" (yes, this is a real thing) to "cure" your ankylosing spondylitis. They will pretend to know more about your body or your disease than even you or your doctor. And they will make ridiculous, insulting generalizations and statements about your disease ("at least it's not cancer," or "if old people can deal with arthritis, I'll think you'll be okay.")
The positivity in writing about my condition
But I'm going to put all of that nonsense aside for a moment and focus on the positive. Before I was formally diagnosed with ankylosing spondylitis in 2017, I was writing professionally. I'd written all sorts of personal, confessional essays — some that I regret, others that have gotten me literal book deals. But when AS came into the picture, I suddenly felt myself come to an impasse.
If I chose to write about it, it'd become very real. If I talked about AS on the Intenet, then it'd become "my thing." I'd be "the girl with the spinal disease." There's no going back in time once you announce your illness — and yet, if I stayed silent, there's also be no going back. No way to time-travel to my past, before my back felt like an iron rod. Before it wasn't me and my tiredness existing as proverbial conjoined twins in a single body.
I spoke out and things changed
I may as well speak out, I thought. And when I did, things changed for me. I realized that people wanted to hear from others — just as I did when I was diagnosed. I'd troll Instagram hashtags like #ASWarrior or #AnkylosingSpondylitis, looking for pictures of people taking their injections or recovering from Uveitis or working out in the gym with the same brittle, painful body parts I had.
My readers would say things like, "I really needed to hear this," under my AS-related Instagram posts. "This piece reflects my journey!" someone would say, sharing a piece I'd written on Twitter. Over time, I got hired by different media companies and magazines to write about my experience. I felt like I was doing something special and helpful because when a person has a platform, I believe we should use it for good.
I wanted to change the face of arthritis
My goal was to dispell myths. To show that young people could suffer from arthritis. My goal was to show the reality of living in daily pain. My goal was to share the silver lining in the dark moments — something I did when I felt particularly vulnerable and sad and alone. It was like my writing for others would conjure a new mindset for myself. I would write myself stronger, and for a while, I didn't even realize that that's what I was doing.
Over time, the goals changed. The goal wasn't just to inform or dispel. It was to tell the truth, to be radically vulnerable, to ignore the need to embrace the strictly literary, lyrical mindset I'd always had (I studied poetry in graduate school — something I half-regret) and just write — plainly and openly and clearly.
In my writing, I have joined communities, attended meetings, polled patients, and read countless other writers' work and I have learned that people are misunderstood, silenced, and erased by their families. People are in pain every day and they feel alone. People lose their creative hobbies and jobs. People feel like bad parents. People lose intimacy. People fear death. And this is all because of AS or another disease.
But I have also seen people rise above it all, push past the pain, rewrite their lives to accommodate their disease, make space for others, find inspiration in new activities and ways of seeing life, and strive to grow despite the darkness.
So, as a writer, I've seen the darkest and the most beautiful parts of humanity, and it's given me permission to find my reflection in all of that and to translate it for the masses. We only have one another — and I'm so grateful for you!
Other than back pain and fatigue, what is the most common symptom that AS patients experience?