Tag Archives: ankylosing spondylitis

Dan Reynolds Hasn’t Beat AS

I have noticed when Imagine Dragons’ Dan Reynolds is in pain on stage. I see it surface briefly in the form of a grimace with pained eyes, a determined glare into space, or a barely detectable stretch after standing at the microphone for too long. I’ve said to friends, “He’s in pain right now.” Then I blink, and the moment is gone.

I know what Dan’s pain feels like. I know because I have the same disease he has, the one with a name that sounds like a dinosaur: ankylosing spondylitis.

I, too, have learned to mask my pain in public.

Ankylosing spondylitis (AS) is a systemic immune-mediated inflammatory disease that causes pain & stiffness primarily in the spine and low back, but it can also impact other joints. AS can damage the eyes, heart, and lungs; as well as cause fatigue and cognitive impairment. The disease is difficult to diagnose, often missed or misdiagnosed by doctors for years, and it impacts everyone differently. There is currently no cure.

For most observers, Dan looks the perfect picture of health; he posts regularly about his fitness journey, and mainstream media encourages that perception. One might think he has conquered AS and that perhaps everyone with else AS would feel great if they just copied his approach.

I had the chance to interview Dan about living with AS in 2017 for This AS Life and again in 2019 to learn about his new project, the Monster Pain in the AS campaign. I discovered in both interviews that his journey with AS is more multifaceted than mainstream media suggests. Continue reading Dan Reynolds Hasn’t Beat AS

Advertisements

What the Flare? Ankylosing Spondylitis In Distress.

It’s another week of electrocution.

Today, it’s my left side, zapped by live wire, spasming every time I think it’s OK to stop holding my breath. It’s my sacroiliac joint, screaming.

They say a solar flare is a sudden flash of brightness from the sun. My body is the sun, on fire, flaring bright. Continue reading What the Flare? Ankylosing Spondylitis In Distress.

What Does Ankylosing Spondylitis Feel Like? Try This Written Simulation.

Pro-tip: if you have the opportunity, ask a friend to read this to you while you close your eyes so you can really imagine it.


Hey Spondy,

There’s a thick rigid belt around your hips & a dull pitchfork attached to the inside being pushed firmly against your lower back, forcing your stomach to curve perpetually forward in effort to escape the uncomfortable pressure.

A steel wire strung between your sacroiliac joints (the back of your hips) – drilled into the joints with hot barbed-wire screws – is being slowly tightened across your back, pushing that pitchfork deeper into the base of your spine. It’s progressively aggravating a deep, aching, stabbing pain at the core of your being.

Your body is pulsing with a desire for relief. Anything.

There’s a rope attached to the outside of both hips. It’s being pulled backward, forcing your hips to open slightly outward and making your lower back fold in on itself even more. It’s unnatural, limiting your ability to move your legs. You shuffle step to fight against the simultaneous pushing and pulling from behind. Your hips are fighting to function, but they can really only move a fraction of an inch with each step with this pain and stiffness, so you swing your legs forward to walk. Forward movement is the only option to escape the pressure of the pitchfork, even as you are being pulled from behind.

Large, flat weights are hanging from the front of the belt around your hips, rubbing and rigidly pushing against your thighs, restricting range of motion and weighing down your legs. You can barely lift your legs to push them forward to take a step.

Walking is so hard. Every step hurts more. It’s jarring. Your hips don’t propel you forward, your back doesn’t pull its own weight, your legs are sacks of sand, and you can only manage with an uneven shuffle push-pull of your legs into position. It feels like your spine is settling, crushing in on itself as you jostle it into sediment or quicksand. Or, as Mick Mars puts it, “quick-drying cement growing on the inside of your spine. Continue reading What Does Ankylosing Spondylitis Feel Like? Try This Written Simulation.

Women’s March: Make Universal Accessibility a Cornerstone

Millions, possibly billions, of people were devastated on election night in 2016.

I was one of them. I feared for my life.

I graduated Magna Cum Laude in 2009 with a bachelor’s degree, but I now try to survive on under $1,000 per month on Social Security Disability (SSDI) because of a disease I was born with. As a result of this incurable disease’s progression, I am fully disabled and impoverished. I am a living, breathing, pre-existing condition.

After the election sunk in, I desperately sought hope. I clung to the gleam of The Women’s March, craving for throngs of women to somehow save me from this new hell. I had dreams of attending the 2017 march in D.C. but wasn’t sure how I’d survive it. My inflammatory disease, Ankylosing Spondylitis, causes debilitating pain and fatigue if I exert too much energy or stand longer than a few minutes. I would have to rely on my cane, pain medications, and a slim chance of places to sit and rest during a march where I wouldn’t know many people. In the end I settled for attending my local march in Sacramento, CA.

I borrowed a huge, clunky wheelchair from my church and asked friends to push me in it. I noticed people’s kindness – those who made room when I asked for it – and I called it accessibility, when in reality the march’s overarching inaccessibility made it such that I had to rely on the kindness of strangers in order to participate (I remain grateful for the kindness). I had to do what many with disabilities must do in order to survive: ask for help; rely on others; and say, ‘Thank you,’ for not being trampled.

If I could make it to the front, I was told, there was an area for people with disabilities, but I learned of it a hundred yards away – and about two thousand ambulatory people swarmed in a pink pussy-hatted mass between it and me. So, I settled for less and pretended it was sort of OK that my primary view was of people’s butts and shoulder bags. Continue reading Women’s March: Make Universal Accessibility a Cornerstone