Category Archives: Invisible disease

#sickbody, Advocacy, ankylosing spondylitis, Charis, chronic disease, Invisible disease, Patient Advocacy, sickness, spondylitis, spondyloarthritis

What do you use your chair for? How a Lyft driver wore me out.

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My phone rang – someone was calling from a Washington D.C. number. I usually ignore unknown numbers, but something made me answer this time.

“Hi, this is *Frank, your Lyft driver. I see you have a chair, will it fit in the back of a regular-sized sedan?”

I’d forgotten I had my account on the accessibility setting. This must have been why the only available driver was over 15 minutes away – Lyft had to find someone who could transport a wheelchair.

“Oh, I’m so sorry, I forgot I had the accessibility setting on. I don’t have my chair with me.”

“Oh…ok. Well, I’m – I guess I’m about 10 minutes away. Bye.”

In my mind I began creating an awkward (or worse – judgmental) hypothetical conversation for when Frank arrived. Continue reading What do you use your chair for? How a Lyft driver wore me out. →

ankylosing spondylitis, Charis, chronic disease, chronic pain, Invisible disease, spondylitis, spondyloarthritis

Q&A with Charis about her journey with Ankylosing Spondylitis

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*Note 11/28/19: Charis now uses they/them/their pronouns. This post was titled before that change.

These questions were asked by friends of mine after I was diagnosed with Ankylosing Spondylitis. If you have a question, add it in the comments below!

How old were you when you started showing symptoms of AS?

I was 13 when I first began showing symptoms, although I’m beginning to think I was younger since I had really bad “growing pains” in my knees as a young kid. At 13, my hips began aching and cramping – I recall my friends in their 60s telling me it sounded like arthritis.

When were you first diagnosed, and how did you handle it? 

I was officially (clinically/medically) diagnosed during the spring of 2013, although I knew what it was several months beforehand. I did not have insurance when I found out, so I couldn’t have an official diagnosis until after I found insurance. At the time I would have been charged more for having a pre-existing condition. My whole world was uprooted. I have accepted that I have the disease, but I have not accepted what I have lost and what I am and will continue to lose.

How did it present initially and how were you finally diagnosed?

Symptoms multiplied over time as I aged. In late middle school I began experiencing a dull achy pain in my lower back – it hurt to lie on my stomach and prop myself up on my elbows because it arched my back (that aggravated my pain). In college my back would spasm at night. Severe low back pain began my sophomore year in college, even while I was playing college soccer.

Throughout my life: I would be told by people I sigh a lot, but I did not notice it – it turns out I have always struggled to fill my lungs with air. I was also always a very fidgety person, never able to sit in one position for long.

Some upper respiratory bug caught me in the fall of 2012; it wouldn’t go away. I went to urgent care twice in two weeks for a pneumonia scare and a heart attack scare, but each time nothing was discovered. When doctors tried to give me anti-anxiety and anti-depressants, I did my own research and discovered I had inherited my father’s disease. This was days after my 26th birthday in 2013.

I didn’t connect all my symptoms to the same disease until after I was diagnosed. Continue reading Q&A with Charis about her journey with Ankylosing Spondylitis →

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Talking Ankylosing Spondylitis with Imagine Dragons’ Dan Reynolds

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I don’t always interview rock stars – it’s not really my thing. But this day was different. This was personal.

It was a chilly morning, much too early for my stiff body to roll out of bed. But this was a big day – I would soon be interviewing Dan Reynolds, the lead singer of Imagine Dragons.

“This wouldn’t be happening,” I thought, “if we didn’t share a wicked diagnosis.”

In late 2015, Dan announced during a show that he lives with Ankylosing Spondylitis (AS). A year later, he partnered with Novartis Pharmaceuticals Corporation and the Spondylitis Association of America to launch This AS Life Live!, an interactive talk show for and by patients living with AS.

Before I keep going, I want to express how lonely it can be to trudge through life surviving a disease that people do not know about. I spend substantial time and energy educating friends, strangers, and even doctors about my condition, which leaves little room for receiving compassion and empathy – like the supportive gestures people usually offer to someone who has a disease in the limelight. Everyone knows cancer is bad, but AS is not a well-known disease, so for a celebrity to name it on stage is life-changing. Continue reading Talking Ankylosing Spondylitis with Imagine Dragons’ Dan Reynolds →

Advocacy, ankylosing spondylitis, chronic disease, Invisible disease, Patient Advocacy, spondylitis, spondyloarthritis

Ankylosing Spondylitis: Are We at a Tipping Point?

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And I don’t just mean our bodies.

Recently, during a visit to the pharmacy, I noticed someone wearing the same compression gloves I was wearing.

“Hey, nice gloves!” I held up my hands to show mine.

She responded, “I have Raynaud’s.”

I said, “I have Ankylosing Spondylitis.”

…crickets. I might has well have just ripped off my clothes.

She looked as though I’d spoken another language. For a disease that is oh-so-NOT-rare, it sure feels like it in these instances. Not only is it a difficult pair of words to pronounce, people’s initial thoughts might revolve around names of dinosaurs – Ankylosaurus Spoondywhat?

Continue reading Ankylosing Spondylitis: Are We at a Tipping Point? →