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Shades of Rare Illness

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I submitted the following essay to The Cannabist last Friday in response to Season 3, Episode 9 of The Cannabist Show. Ultimately, editor Alex Pasquariello decided it wasn’t a fit for their publication, noting in his response that, “as your submission observes and a cursory Google search reveals, EDS is an incredibly complicated medical topic,” and suggested that I submit it as a comment on Facebook.

This language is familiar to any disability or rare illness advocate. Regardless of the time you spent explaining the case, few journalists will understand. Most will do as Alex has done above and attempt to school me on the complexities of my own condition. I may publish more of our exchange in the future, as it reveals a collision of ideologies that few in the media industry are privy to.

How disability and chronic illness are dealt with in contemporary journalism outlets is one of the most important media conversations of our time. Organizations like The Cannabist ignore this narrative at their own peril, and yet, actively choose to do so.


“Look here,” said my orthotist, pointing at a handy diagram of the human foot. I squinted. After removing the frame from where it was hanging and placing it gently in my lap, he continued. “This is connective tissue. You have a connective tissue disorder,” gesturing now much more carefully towards the point of pain and extreme laxity in my ankle. “We can’t exercise that.”

My name is Nicholas Young. Since I can recall, I’ve battled chronic pain and extreme fatigue from severe, progressive scoliosis, joint instability, and autonomic nervous system dysfunction. After fighting for almost three decades without so much as the name of my medical enemy, I was finally granted answers in 2015. What felt like a lifetime of genetic testing and clinical observation culminated in one terrifying moment when I was diagnosed with a rare, incurable genetic connective tissue disorder, Ehlers-Danlos Syndrome.

Ehlers-Danlos Syndrome (hereafter referred to as “EDS”) affects the body’s ability to produce collagen, a crucial structural protein. Thirteen subtypes exist within the EDS family of disorders, some more severe than others, but each with its own collection of symptoms and comorbidities. Needless to say, the experience of most patients can be startlingly complex. Even checkup visits with my doctor are fraught with many questions and doubt. The future quality of life for any EDS patient depends on successfully plotting their way through the minefield of symptoms, misinformation, and disinterested physicians: oversimplifying the diagnostic process can be deadly.

Last week’s installment of The Cannabist Show did exactly that, leaving viewers with a poorly rendered portrait of the daily struggles endured by EDS patients. Make no mistake, though our bodies are weak, all who carry this diagnosis are warriors. It is also our collective responsibility to explain that not all who struggle with the syndrome will win. Complications of the Vascular EDS subtype include sudden arterial rupture and fragility of internal organs.

Most of us who fight EDS daily cannot, and will not beat this multi-systemic condition through exercise. Until just over a year ago, I was an avid street cyclist navigating the stop and go traffic of Chicago. Some days, covering 30 miles of city streets wasn’t unrealistic as I sped between my studio, various breweries, meetings, and events. While I do not represent the worst of what EDS can do to the human body, I’m a prototypical example of how symptoms rise out of nowhere, intensifying until the pain is so great suicide becomes a viable option. Today, multiple systems, both in-and-outside my body are failing despite attempts to live an active lifestyle and frequent cannabis consumption.

This is the narrative long ignored by the media, in print and online. Outlets lap up the promise of inspiring viewers, but only if the story is overtly unrealistic. I’m disappointed, but for my own mental health, cannot expect otherwise. The onus is on the on-camera guest, specifically if they’re a patient or caretaker, to share an accurate description of the disorder at large. There’s no other way to slice it: both the host, Jake Browne, whose comic banter often soundtracks my days, and his guest were derelict in their media duties. I can’t completely steer away from co-host Janae Burris’ comment about starting rehab with “water aerobics.” Please, do some research.

I say all of this as the former producer of a fitness radio show that occasionally touched disability as a concept. Even as my own mobility was being drastically reduced by EDS, I struggled to diffuse common ableist tropes in my midst. I’m writing not to shame those on camera, but to educate them. Central to that education is understanding how disabilities and rare illnesses are represented in media and practicing responsible journalism by steering the conversation away from common tropes.

Instead, the broadcast turned a rare disorder that I and countless others struggle with into a footnote; a jumping off point for the all-too-common superman narrative, which becomes extremely problematic when adopted as medical culture.

Contrary to the message viewers encountered in the interview, doctors are often hesitant to label a patient with limitations. All it takes is reading a handful of articles on The Mighty, or another publication primarily authored by chronic illness warriors and you’ll find that most of us are accused of faking symptoms in order to be seen.

In writing this piece, I’ve found myself between two worlds. I strongly believe the pharmaceutical industry has wrought untold damage in its’ years of economic supremacy, and while opioid pain relievers are unhelpful to a significant percentage of EDS patients they’re beneficial to others. Living with EDS often means rejecting simplistic fixes that inadvertently erase large swaths of our community.

Advocating that patients ignore all doctors’ advice and instead rely solely upon exercise, diet, and cannabis is equally reckless.

A few weeks ago, I saw a neurologist in hopes of finally diagnosing why standing has become so difficult. If I’m upright for more than a minute, I become clammy, breathless, and disoriented. At worst, I can faint, collapsing into a heap of dislocated bones on the spot. I no longer have the stomach to listen as self-styled disability advocates drone on about a life some of us may never have.

EDS manifests itself as one or several of thirteen different subtypes. Thirteen. Thirteen degrees of severity. Thirteen unique perspectives.

I missed even a hint at the other twelve narratives.

The next time you’re tasked with sharing a story like this one, please set your view a little wider. This is Colorado, after all, the land of sweeping panoramas and gorgeous mountain vistas. Even in a divided political year, our state is purple.

Together, we can ensure the stories told and language used by our media outlets is just as inclusive.


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Nicholas Young is a husband, father, technologist, and rare illness advocate currently hailing from Denver, Colorado. He lives amid the snow-covered mountains with his wife, Susan, and daughter, Sloan.


See other posts tagged with: chronic-illness, disability, media-representation, ehlers-danlos-syndrome, criticism