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

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“The God of All Doctors,” Sterile Environments, & Dirty Medicine

I held a tissue over my face with both hands, pressing my fingers gently into both eye sockets to catch water before it flowed down my cheeks. I breathed in as waves of emotion erupted faster tears and a scrunched up face to hold them in.

I had begun crying mid-visit. Again.

Two years before, I had sat in the same chair and cried the same tears, but today I felt different. Stronger, in a way. Less afraid. The tears felt good.

I heard the doctor stop typing and swivel their desk chair to face me.

I breathed out. Continue reading “The God of All Doctors,” Sterile Environments, & Dirty Medicine

I’m Just Another Lazy Faker Living With Chronic Disease

Staying alive is my job.

Taking pills, managing side effects and flares, figuring out the best mix of treatments for each day’s changing symptoms. Playing medical mystery with my own body every 12 hours.

This is my life’s work.

Managing doctor conference calls and meetings each week to negotiate the most effective care to keep me alive. Navigating the ever changing healthcare system, using my body as a bargaining chip for its own survival through treatments. I am my own case manager. Continue reading I’m Just Another Lazy Faker Living With Chronic Disease

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.

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