Category Archives: Advocacy

Giving Back is About More Than Money

I recently wrote a narrative about my relationship with the Spondylitis Association of America for #MyGivingStory, a campaign that focuses on people’s relationships with giving to nonprofits. The story I submitted was not a finalist, but I believe it deserves a life beyond that campaign.


I still remember calling the Spondylitis Association of America (SAA), declaring, “I’m going to be a poster child for Ankylosing Spondylitis (AS).” I had just been diagnosed with AS – a severe, painful inflammatory disease that mainly affects the spine/low back and can cause bone spurs to fuse joints together, typically in the spine.

As you can imagine extra bone growing in your body that’s not supposed to be there can be quite painful.

Additionally, since AS is systemic it can also damage organs including the eyes, liver, lungs, and more. Over 2.7 million people have Spondyloarthritis (the type of disease AS is) in the United States – that’s more than twice the number of people who have Rheumatoid Arthritis. It’s also more than the number of people who have Lou Gherig’s disease (ALS) and Multiple Sclerosis (MS) combined. AS isn’t rare, but it often feels that way.

I was angry. So I became determined to use my physical strength and my pretty face to raise awareness of an ugly disease – I declared I was going to backpack across the country, give speeches, raise money, find a cure, and make Ankylosing Spondylitis a household name. Continue reading Giving Back is About More Than Money

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I Told My Story at the 2018 Women’s March in Sacramento

Below is a video and transcript of the speech I gave at the 2018 Women’s March in Sacramento. The current video may be updated with an official rally video after it is released.


(Video courtesy of Darcy Totten, Activism Articulated)


Sacramento!!!

My name is Charis.

Five years ago I was asked to testify on a bill and I said to the person, “I am nobody, how can you expect me to say anything to convince these lawmakers to choose the right thing?”

She said, “Charis, all you have to do is share your story. Nobody can tell your story for you.”

Sacramento! Can you share your stories? That’s all you have to do.


I’m a former college athlete. I graduated magna cum laude from a women’s college and I paid off my college loans in 6 years. I could do anything!

But.

Then I was diagnosed with Ankylosing Spondylitis. You can’t tell because I’m hiding the pain, but Ankylosing Spondylitis hurts like hell and my body’s working overtime just to survive. I also live with Post Traumatic Stress Disorder, Depression, and Anxiety.

In 2016, I made the hardest decision of my life. I applied for Social Security Disability. Now, two years later, I am still waiting for a decision on my case. For two years I’ve been surviving on savings and occasional financial help. But with Sacramento’s rent rising astronomically and my savings and health in decline, my future is uncertain at best. Continue reading I Told My Story at the 2018 Women’s March in Sacramento

Your Friend Just Got Diagnosed with Ankylosing Spondylitis. What the Heck?

 

First of all, what is Ankylosing Spondylitis (AS)?

Wait, how do you even pronounce it?

Ankylosing Spondylitis (An-kee-low-sing Spon-dih-ly-tuss) is a disease that causes inflammation throughout the body, especially in the spine and low back, and can cause bone spurs to fuse joints together, typically in the spine. As you can imagine, extra bone growing in your body that’s not supposed to be there can be quite painful. Additionally, since AS is systemic it can also damage organs including the eyes, liver, lungs, and more.

AS is generally treated by a specialist doctor called a rheumatologist. The clinical treatment recommended to slow down the progression of AS, as stated in the 2015 AS treatment guidelines published by the American College of Rheumatology, is a biologic drug if non-steroidal anti-inflammatory drugs fail (my understanding is that a combination of therapies is common, both pharmacological and complementary). A biologic is a specialty drug made from living cells (biologically, rather than chemically) that, in short, suppresses the immune system. In ankylosing spondylitis, the body constantly attacks itself, seemingly without a real danger present, which causes inflammation and damage. The biologic drugs slow that reaction but in doing so also decrease the body’s ability to fight infection. You can read more about how autoimmune vs auto-inflammatory diseases work here (hint: AS isn’t proven to be autoimmune).

So now that you know a teeny bit more about AS imagine you are the one who was just diagnosed with it.

Scary, huh?


Congratulations are in order simply because you are reading this blog post. It’s difficult to believe, but I often hear from people whose family and friends shun them for “faking being sick.” These same family and friends often don’t make an effort to learn what their loved one is actually experiencing. So thank goodness you believe your friend and want to learn more.

Continue reading Your Friend Just Got Diagnosed with Ankylosing Spondylitis. What the Heck?

Dear Prescription Opioid Debaters:

Dear debaters,

I am a 30 year old who inherited a lifelong inflammatory disease called ankylosing spondylitis (AS). AS can cause the spine to fuse together from bone spurs and can affect organs and other joints. AS causes significant pain, to put it lightly.

I am also a former college athlete and marathoner. I know what it means to push through pain as an athlete. But I cannot push through the pain caused by my disease. Pushing through it causes the disease to progress and the pain to increase.

My main treatment is a drug made from living cells (the same class of drugs that treats many cancers); it helps slow the progression of my disease. Because this treatment is [finally!] working, it also reduces some of the worst symptoms. But AS is a severe disease with no cure, so even with this specialty drug I still have plenty of pain.

And, like millions of chronic pain patients who fight simply to survive daily, I’ve tried everything to control the pain. Continue reading Dear Prescription Opioid Debaters:

I Told My Healthcare Story at a Press Conference Today

Today, Congresswoman Doris Matsui hosted a press conference in Sacramento in response to the Graham-Cassidy healthcare bill. I was invited to share my healthcare story as a Chronic Disease Patient Advocate alongside several elected officials in attendance, including the Congresswoman, California State Senator Dr. Richard Pan, California State Assemblymember Kevin McCarty, Sacramento Mayor Darrell Steinberg, and Councilmember Angelique Ashby.

Two leaders
Charis Hill and Congresswoman Doris Matsui

These were my remarks:


Continue reading I Told My Healthcare Story at a Press Conference Today

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

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.

Watch This Trailer For “Becoming Incurable,” a Documentary About Chronic Disease

The day before I turned 30 I received an email that would change my life.

It is not abnormal for me to receive emails from chronic disease patients, news outlets, doctors, and advocacy groups.

But this email was from Victoria, a videographer, sharing her vision of a documentary highlighting the stories of three people living with physically debilitating, incurable diseases. She wanted me to be one of them.

Participating would require me to open my heart, home, and schedule to her camera lens, questions, and vision. Saying no never even crossed my mind. Continue reading Watch This Trailer For “Becoming Incurable,” a Documentary About Chronic Disease