Tag Archives: chronic illness

The Doctor Will See You Now

It’s the season of dropping things, hips and elbows knocking door frames, “Will this flare ever end?” weeks, buckling knees on flat ground, brain fog competing with memories of the years when I felt younger than my age.

It’s the season of “But you don’t look sick, you look Great!” and “Have you tried yoga?”

It’s the season when, as soon as the door latches shut, the safety of our homes becomes the hell of letting our guards down, removing the mask. Our yoga is the inching off the bed on our bellies, gripping the prescription bottle to suck down a pill and doze for 30 minutes in half-inchworm-half-human-pose before grasping our walker to pee in the middle of the night with shuffle-steps amid stifling stiffness and the pain of partially fused joints that used to swim in the joint juice of cartilage. Chronic yoga.

“Yes, I already do yoga. Maybe I’ll show you sometime.” Continue reading The Doctor Will See You Now

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The Disease Everyone Loves to Hate

Content note: this post discusses the topics of suicide and death.


I had a pretty good treatment day recently.

I didn’t even get upset that a new nurse tried and failed to get my infusion started. What’s another blown vein, anyway?

The infusion team was excited because they thought they’d seen a picture of me on a Facebook ad (it wasn’t me) – they’d even saved a screenshot to show me. My conversations with the nurses were light-hearted before I transitioned into catching up on emails.

I hid myself in my favorite corner where I can sometimes pretend I’m the only one in the room and I nearly forgot I was in a building with the word “cancer” all over the front of it.

I love the infusion team. And I better love them – these are treatments that I’ll need for the rest of my life unless this drug stops working or a better treatment shows up. I’m what you call incurable.


But as I was leaving my appointment I almost walked into a vendor table being set up for an event. On the table was a sign reserving it for a lingerie business. And then my eyes caught something else: pink.

Pink was everywhere. Rose petal fabric. Pink shirts. Pink everything. Pink was in the air. It smelled pink.

October. Breast Cancer Awareness Month.

I can’t explain how crushing it was to leave my better-than-usual treatment, then turn the corner into an explosion of pink for an event that screamed, “You’re in someone else’s space.”

I have Ankylosing Spondylitis. The infusions I receive for my disease happen in a medical complex named Mercy Cancer Center. Every time I enter the building I see the name in big bold letters above the door and behind the check-in desk. While I wait for my appointment I see poster-sized lists of support groups and special events specifically for people with cancer. Continue reading The Disease Everyone Loves to Hate

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

My Running Shoes Are Waiting for a Cure

My running shoes shuffle hesitantly by the door, moving in unplanned rhythm with cat hair and dust bunnies that create a grey veil over their silent, still tongues. How long have they been sitting there? They peer at me hopefully every time I open the front door, but I can see they feel more neglected each day, every time I look at them and shake my head: “No, not today. I don’t know when. I’m sorry. I miss you, too.”

Continue reading My Running Shoes Are Waiting for a Cure

To the Social Security Administration About Denying My Claim for Disability Benefits

When I first wrote about applying for disability, I mentioned a standard practice of the Social Security Administration: default semi-automatic denials of disability claims. On average, it takes 3-5 years for someone who is disabled to be awarded benefits. This routine dragging out of claims affects me and many others financially and emotionally and also feels immoral and unjust. The disability process has been intentionally crafted to be as difficult as possible to navigate and even survive, yet this program was founded for the purpose of helping people live better lives.

The following letter is my formal response to a denial of my first claim. To be clear, many claims are denied twice before moving to a hearing with a judge. I am sharing this publicly because I want to expose the vulnerability so many go through as they seek disability – as they seek resources so they might live longer, healthier, fuller lives in the face of significant barriers to a substantial work-life.

Before I share my letter, here are some reasons I was told I am not disabled under the rules of the Social Security Administration:

Continue reading To the Social Security Administration About Denying My Claim for Disability Benefits

Healthcare Is a Privilege. It Should Be An Inalienable Right.

I grew up privileged – white, yes – but also without ever considering what life would look like if my mother’s job did not provide her and her family with healthcare.

When I had walking pneumonia in fifth grade and was in bed for three weeks, I never considered what it would mean if my mother had to choose what to do or where to seek help if we didn’t have insurance.

When I was on birth control pills in high school, the drug co-pays were predictable. I didn’t fear my medication would suddenly become cost-prohibitive.

When I broke my nose, I never once considered that some people couldn’t go to the emergency room because they didn’t have insurance.

When I was in college I tore my ACL and later broke my hand playing college soccer. My bills were covered. I didn’t know other students didn’t have the healthcare I accessed.

I believed healthcare was something everyone had. If someone got sick or injured, s/he went to the doctor, paid the copay, then went to the pharmacy, paid the copay, etc etc.

I was blindly privileged. Continue reading Healthcare Is a Privilege. It Should Be An Inalienable Right.

We All Need Gathering Places

Arthritis Introspective 9th Annual Gathering: #GrowTogether16

Nashville, Tennessee

May, 2016

Dear Journal,

I’m spending the weekend with a lot of really special people. We’ll drink alcohol, many of us. And take lots of drugs combined. Lots and lots of drugs.

Drugs we wish we didn’t have to take. Did you think this was Burning Man?

No. We’re all sick. We all have some form of arthritis, and many of us brought loved ones with us. We came to have fun – not despite – because we have arthritis.

We didn’t come here to complain. We came to share experiences and be reminded that we aren’t alone. We are a family. We know exactly what it means to survive, and we are determined to be whole humans in the process.

Many of us suffer from multiple chronic conditions because of and/or in addition to our arthritis: depression, anxiety, heart disease, diabetes, chronic respiratory conditions, high blood pressure, etc.

And the drugs. Oh the drugs. Did I mention the drugs? Biologics. Corticosteroids. Chemotherapy. Non Steroidal Anti-Inflammatories. Analgesics (oral and topical), Disease Modifying Antirheumatic Drugs, eye steroids (did you know there are steroids for eyes?). Sleep medication. Anxiety medication. Depression medication. Blood pressure medication. Insulin. Medical Marijuana. Etc. Etc. Etc. Continue reading We All Need Gathering Places