Ehlers-Danlos Syndrome awareness month: straddling the line between “you’re too sick” and “you aren’t sick enough”

My goal this EDS awareness month is not to teach you about Ehlers-Danlos Syndrome and the peculiar myriad of symptoms and associated syndromes.

Instead, my goal is to expose you to what it is like to be a moderately high-functioning individual with a vexing, systemic, chronic illness who is too functional and ambitious for most available treatment options but too affected to function normally. My hope is for you is to realize that every day, I’m forced to gamble with my health regarding action or inaction due to a lack of attentive care and insufficient research on my condition. Realize that I am not unique, that this story fits countless others, and that we desperately need a change.

A classic dilemma most EDSers – zebras, as we call ourselves – face is being accused of lying about what we’re experiencing. Due to the nature of our so-called “invisible illness”,  we’re often told that we don’t look sick. Chronic, unrelenting pain is not visible, nor are its sequelae. Connective tissue disorders manifest differently in different patients – that is, there are variable presentations and no accurate “textbook” definition. As such, making a diagnosis is hard, and treatment is even harder. Many of us experience  healthcare providers accusing us of lying; often, we receive referrals to psychiatry and curt insults regarding our sanity. If we’re lucky, we can find a doctor who knows how to even pronounce “Ehlers-Danlos,” and if we’re fortunate, a compassionate, capable physician – but wait lists are typically months to years long even for established patients. Patients in need of genetic testing to rule out the vascular subtype often have to wait over a year – if they’re accepted at all – and risk spontaneous aortic dissection or organ rupture in the meantime. How is any of this acceptable in the context of modern medicine?!

I am currently stuck in a position where my medical team has no remaining ideas on how to treat me. I have multiple joint dysfunctions that make me a potential surgical candidate, but none of the orthopedic surgeons I have seen are willing to provide any sort of advice one way or the other (surgery is risky and outcomes are not always predictable with EDS patients) and have essentially thrown their hands up, leaving the ball in my court with no net on the other side. I am not a candidate for a variety of injection-based musculoskeletal therapies because I am not disabled enough, and my request for consultation and treatment at Mayo was denied because they couldn’t determine what I would gain from a visit. Most pharmaceutical pain regimens are not being considered due to my age or lack of disability despite the fact almost every route I have taken – with both traditional and non-traditional treatment modalities – has been ineffective. Physicians who are willing to help are unwilling to commit to certain treatment plans due to a lack of general scientific understanding about EDS and clinical outcomes.

I want to make it abundantly clear – in no way do I begrudge my particular team of physicians. It is not their fault they work for an institution that refuses to hire sufficient staff, and it is not their fault their patient burdens are beyond what they can feasibly handle. They are not culpable for the lack of research about EDS and hypermobility disorders and clinical outcomes for various treatments and procedures. It is humbling, in a sense, to realize the reason for this is because your health condition is less profitable to study or treat than cancer or heart disease, despite the fact hypermobility disorders are by no means rare. Every healthcare decision I make is a gamble, as is waiting to make one.

Much of my medical advice has developed into chiding me for being a student, as that is now the apparent source of my problems, and warnings about my choice in profession because it is “too demanding.” That being said, I am more functional than many other zebras with the same injuries – so you’d think I must be doing something right! But because of this, I’m “too functional” to receive types many of care despite trying to live my life with recurrent subluxations and dislocations in every joint down to my ribs, with hip labra tears, with muscle fasciculations, with spine and intervertebral disk pathology, with pain and paresthesia, with the secondary memory dysfunction, exhaustion, and cognitive impairment that follows. I’m left to try to follow my passion without the medical support I need, and I’m left to take chances with my body and my future based on my own knowledge and drive.

To them, I am not sick enough; to the rest of the world, “I don’t look sick.”

And despite what they think – despite their inaction – I am far too stubborn to let EDS (and their subjective opinions about my health!) get the better of me. I’ve got stuff to accomplish. Sometimes I mistake my obstinance for perseverance, but hey, it’s been working out alright so far.

Hug a zebra this month. Just not too hard – we might dislocate something on you! ;]


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