Category Archives: disease awareness

Talking Ankylosing Spondylitis with Imagine Dragons’ Dan Reynolds

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

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Ankylosing Spondylitis: Are We at a Tipping Point?

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?

Participate in The Spondy Project. Get Paid.

About a year ago I connected with the folks of Self Care Catalysts and downloaded their free app, AS Health Storylines (available on android and Apple products), that helps track medication, symptoms, diet, appointments and more. This, and other apps, has helped me – sometimes I need a reminder to take a certain medication; I also like all this information in one place so I can share it with my doctor and disability attorney.

Recently, Self Care Catalysts has also unveiled The Spondy Project, a paid research opportunity for patients with Ankylosing Spondylitis and other forms of Spondyloarthritis. Participants can receive up to $100 for sharing their experiences through an app for up to four months. Read more below to see why I think you should sign up: Continue reading Participate in The Spondy Project. Get Paid.

14 Ways To Become a Chronic Disease Advocate

There is not a one-size-fits-all way to become a chronic disease advocate or activist. Everyone’s journey will be shaped by personal experiences, interests, time and ability.

I’ve gathered these tips from my own journey, but by no means is this an exhaustive list and I don’t recommend attempting them all at once. Also, while directed at people who have chronic diseases, these tips can apply to partners, caregivers, friends and family who want to become allied advocates.

As long as the end goal is to raise awareness publicly for the sake of social or political change, there is no inherently wrong way to create an advocacy platform.


1) Get comfortable telling your own story. Come out as sick. Introduce your disease to friends, family, and peers in a manner that also outlines your clear desire for them to listen – you may even need to say, “This is my story and unless you have lived it, I expect you to really hear me.” No one can tell your story for you and owning your experience can be empowering. Also consider that there are hundreds, thousands, or millions more people experiencing the same things you are.

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Charis giving a TEDx talk in Sacramento, CA in September 2016

Continue reading 14 Ways To Become a Chronic Disease Advocate

One Lovely Blog Award | BeingCharis

BeingCharis has been nominated for a One Lovely Blog Award by Rhiann, who writes about her long-standing brain stem lesion and spastic paraparesis on her blog,  ‘My Brain Lesion and Me.’ Check out her blog to learn more about experiences, insight, and life from another chronic disease sister. Thanks for the nomination, Rhiann!

The One Lovely Blog Award is a novel way of recognizing and introducing bloggers to each other as well as readers to different bloggers. Read a few facts (encouraged) about me below and check out those I’ve nominated to receive this quirky, collaborative, community-connecting award.

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Continue reading One Lovely Blog Award | BeingCharis

A New Wheelchair User’s Experience at the Women’s March

The first time I used a wheelchair was after tearing my ACL during a college soccer match in Washington, D.C. in 2005. My teammates convinced me to use one when we visited the Holocaust Museum, instead of crutches. I remember feeling invisible. I remember being trapped in the middle of congested hallways and exhibit rooms, seeing nothing but the backs of people scooting around and in front of me like I was a planter box in their way. I remember feeling empathy for people who spend a majority of their lives in a wheelchair. I hardly remember anything about the museum from that visit. And I became terrified of ever needing to use a wheelchair again.


On January 21st, 2017, I rolled in the Women’s March on Sacramento alongside some 30,000 people. I have only recently, very reluctantly, decided to begin using a wheelchair because of deteriorating health. My experience from college still haunts me, but I am learning to embrace how much more fully I can participate in life by using assistive devices that reduce pain and fatigue caused by Ankylosing Spondylitis. It’s the difference between staying home and showing up.

However, I was nervous about navigating the march, even with friends to help push me. I expected that I would spend all my energy advocating for space just to be able to proceed in a straight line. I thought I might regret the decision to use the chair, even though not using it could result in being bedridden for days or weeks.

Would I return home wishing I had not gone? Continue reading A New Wheelchair User’s Experience at the Women’s March

People With Severe Health Conditions Dream of Simple Things

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I want to go to the doctor one day and once again check the box on the intake paperwork that says “generally healthy.” The once robotic maneuver of sliding my arm smoothly down paperwork to check off a straight line of boxes is now a chore requiring concentration and an agile hand zigzagging across columns.

Having the opportunity to check that “generally healthy” box would reinstate my self-worth as an able, capable human.

This dream is on my bucket list between trips to Hawaii and Zamibia. But the dream vacations do not get much attention – I’m distracted by the more immediate and unrealistic desire for good health. I’m waiting with open arms, but I don’t expect this invitation will be answered. Continue reading People With Severe Health Conditions Dream of Simple Things