A sour note at a music festivalA few weeks ago I made a grand escape from life and headed to the desert of California to attend Coachella, a three day music and arts festival.  While anyone who heads purposely into the desert might be prepared to have their sanity questioned, I was not prepared to be mocked for my very real need for pain medication.

On the first day, as epic names in music busted out their beats and riffs, I attempted to pace myself.  I had three days ahead of me, I had done this last year, I could do this better this year.  I had filled up my little pretend jar of spoons  during the previous week, and planned to decimate it with glee over those three days.

The temperature was agreeable, a warm 80 degrees was met with a cooling breeze.  As the sun set, it cast it’s watercolor strokes of muted oranges and purples across the desert hills. With so much beauty around me, why were my knees failing me?

I had prepared this time, yet as any of you who live with a form of arthritis or any autoimmune disease know, it will always be if nothing else – unpredictable.

I could feel my knees swelling, no need to look at them and validate it.  The fluid they filled with began to restrict movement, and it was time to ask for help.

I stumbled into a medical tent, explaining that I didn’t injure myself, thereby bypassing the need to fill out any CYA forms. I explained to the EMTs that I have Rheumatoid Arthritis because they would at least have preconceived notions of what that meant.  I didn’t mention the rarer form Undifferentiated Spondyloarthropathy for fear they would start to see me as a hypochondriac, or grossly contagious.

One EMT said, “my wife has that.” After some discussion on living with the disease, this became questionable, but his kindness to my plight was no less diminished.  He got me settled with ice and insisted on wrapping my knees in compression to try to stop the swelling.

I rested, listening to the muffled throbbing the tent had deformed from otherwise well-crafted songs.

Then I hear, “So you addicted to Norco yet?”

I felt like I must have been high on Norco, because I was looking at the face this stupidity came out of: an on-the-clock EMT, a healthcare professional, someone I am supposed to be able to trust.

Pissed, I said, “Excuse me?!”

She continued on, leaning in with a smirk on her face.  Her eagerness made it seem like she wanted to share in this “Norco addiction” she assumed I had.

Firmly I stated, “I take pain killers as needed to control the pain of my LIFELONG condition.”

Met with half laughter, I got a smug, “Uh huh.”

“For your information, I successfully weaned myself off of narcotics over a month ago. I have more self control than you could ever hope to have.”

Finally having scared her off, and left in utter shock, I wanted to cry.  I was horrified that my pain was mocked, that my strength was put into question by a random healthcare professional and I struggled to make sense of it.

But there is no sense to be made of it. Ignorance is pervasive, even in the medical community.  For some, their jobs can become work like any other field, where they grow tired of showing up and only put in the minimum effort to collect their paycheck.

This is a problem with our healthcare culture, a problem with the stigma of chronic pain and the use of pain medication.

I left my anger in that tent, and walked back into the gleeful festival crowd, determined to enjoy my evening, as she was not worth my tears.

I will thank her though, as she provided kindling to my advocacy fire.  We as patients have to know that we deserve to be treated with empathy and respect.  We have to have the strength to speak up for what we know is right.  The more we do it, the faster the culture will change. Our voices have power.

Be Well,

Britt Johnson

Author’s note: the local fire department responsible for this EMT crew has been contacted and made aware of their need for further training in empathy and respect.

To read more by Britt and to contact her:  www.thehurtblogger.com

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