The Washington Post recently published an article about CRPS titled “The Strange Pain that can Overcome Kids, Especially High-achieving Teenage Girls.” The article was shared with me by someone who has never experienced a chronic, physical illness and believes that you can actually have unlimited spoons. The premise for sharing this article was simply, “I thought it could be interesting”.

Here’s the thing about living with CRPS: it’s not interesting, it is excruciating. 

This article wasn’t an easy read for a person who lives with this condition or in general. The story was raw and real in its recollection of the girl’s suicidality and deep despair. I know that feeling. I could understand.

I shared this articles with several of my RSD sisters, and for those of us who have experienced programs like the ones described in the article, by the end of reading this piece we were feeling like we were fifteen again and meeting our parents by the PT gym at the end of the day. We too easily remembered our own puffy, red faces that were damp from crying, sweating, and working incredibly hard all day. We could feel our legs as wobbly as Jell-O from pounding the concrete stairs for “just thirty more seconds” over and over again. I was transported back to the days where I convinced myself I could do anything for thirty seconds. Later, this notion was expanded to “I can do anything for the length of one song” – just as long as it’s not Stairway to Heaven! As I was reading this article I could actually feel the roughness of a towel rubbing on my leg. I pictured the shaker machine – a machine meant to desensitize our bodies to vibration – and felt the heaviness of dread in my throat and chest. Honestly, it makes me shudder.

The truth is, this disease is horrific and the treatment isn’t glamorous or complacent. In fact, I remember coming home from the hospital after weeks of treatment protesting and boasting that my physical therapy regimen was more difficult than the gymnastics conditioning I complained about during every workout. I worked so hard for my recovery! I was thrilled to get back into my sport, but the emotional toll and trauma of this condition and the various treatments weighted heavily on me as I progressed through the rest of my life. I became one of those people who would do things “in spite of” my pain and to prove everyone wrong. During my physical recovery, I unlearned healthy limits and pushed my body too hard too often both out of fear of relapsing and losing everything I worked so hard to regain and out of sheer persistence – I had to prove to everyone and to myself that my pain wouldn’t stop me. I will never unlearn “doing too much” and I will always have a hard time differentiating between “good pain” and “bad pain”. Doing too much has been my emotional defense mechanism and my brick wall that has separated and protected me from the world ever since I was able to move freely, yet not pain free, again.

The problem with articles like this is that they present only one story and they’re oversimplified. First of all, the characterization of this illness as something that is common in high achieving girls makes it seem like we did this to ourselves. Or worse our parents’ ambitions for us got us into this mess. The article goes as far as to describe Type A overachievers as “one stone’s throw away from being a pain kid”. This simplification absolutely dismisses the severity and rareness of our lived experiences. For some of us, our bodies cope with stress in maladaptive ways – i.e., pain. For many of us, our capability to hone our Type A strengths is what helped us to overcome this debilitating out condition. We were taught to push through the pain. The mantra “If it hurts to do something, that’s what you should do” is how we learned to regain and reclaim our functionality. Discipline and commitment were the mechanisms by which we executed each day. Consistency is how we maintain our gains and continue to grow stronger. Those Type A characteristics saved my life.

In this intense program, we were taught to ignore the pain and prioritize functioning. It was the epitome of “fake it til you make it”. One person I talked to told me, “It was engraved in your mind as a kid that you have to act like it’s all fine but no one fully understands… that you’re not fine”. As I read this article I felt like my 3D, actual living body was squished into some 1000+ basic words on a page. A huge chapter in my life was minimized to a single story of one person’s “strange pain” that others might find “interesting” – my life and (my) pain became click bait. “Strange” is pathologizing language – one step away from “crazy” – that makes us feel less believed and like we’re making it up. This actual, legitimate pain is sometimes inexplicable and definitely described and experienced differently by each person, but regardless it’s tangible and all too familiar to me.

This isn’t the first time mainstream media has failed to adequately capture the lived experience of someone with RSD. In 2013, Dance Moms featured Nia’s experience with chronic pain. Nia’s mom says, “Nia says she has the pain but when she’s not thinking about stress… she’s fine… I think it’s in her head that something’s wrong with her feet… she has to tell her brain to shut off the pain signals”. This 2:20 segment of TV did not do Nia or our community justice. This mentality practically implies that we are choosing to live in pain. If it was that easy to just shut off our brains and decide that we are not hurting, then by that same logic many of us wouldn’t also have depression or anxiety. It is important to note that the comorbidity of these conditions is exceedingly high. The bottom line is: this is a real illness. We cannot shut it off. This simplification which occurred on a show that likely has a large audience of “high-achieving teenage girls” was a missed opportunity. Put another way, the public perception of this illness doesn’t align with how it manifests for everyone – with all our realities – and that’s harmful to us.

I realized this article and these “media moments” aren’t made for “us”. This Washington Post article wasn’t written for people whose doctors didn’t believe them, who have spent years warping their own experiences in their mind so relentlessly that they have convinced themselves they were faking it or that when they were feeling their worst it wasn’t really “that bad”, who felt like their pain and neediness tore their families apart and ruined their friendships. This article wasn’t written for people who know what it’s like to “lose what you are and what you love” and have to fight like hell to get some semblance of the life you knew back or worse, accept your new reality and deal with the implications or that – “even if – and especially if – it hurts”.  I finally realized this article was never going to be interesting to “us”.  And, it was interesting to “them” the same way a “freak show” is interesting at the circus. It’s othering and othering doesn’t take ever take the form empathy or compassion. It rarely even resembles pity.  It feels like on a smaller scale this article evoked the same thoughtlessness and naivety that “13 Reasons Why” did when it appealed to a privileged, untroubled audience, and “To the Bone” did for people who do not have explicit experience with eating disorders. Representing shock value at the expense or representation is irresponsible.

My painful disease reminds me daily that I don’t have control over my body and I will hurt physically and mentally sometimes just because the wind blows. However, I do have control over the choices I make each day about the life I lead and the way I love myself and my ambitions – fiercely. The article got one thing correct: “It is not as simple as “come for three weeks and now your life is all better.””

After all this ranting, I am left feeling energized by the possibility of a different conversation about “us”. My condition and my experiences living with chronic pain have shaped who I am today. I am hopeful to one day hear sentences like this, “this article was interesting to me because of what you shared about your experience. I want to understand you better. How do you relate to this article?” I will look forward to conversations that are powered by the curiosity to better understand my story and a willingness set aside expectations in order to make space for surprise, ambiguity, and maybe even genuine understanding.

What questions do you have? Let’s talk!