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Life on the Inside, Part I

I wake up, though not by choice. The alarm clock isn’t ringing, and the apartment is quiet. My bedsheets wrap me in a warm, kind hug; and although the bed is comfortable, I’m miles away from a blissful state of mind.

Rising, I realize what woke me: first, I feel it in my neck, shoulders, upper back, and knees. The remaining body parts — hips, hands, and feet — all begin to play their part in a symphony of tension and pain. I migrate to the bed’s edge. The pain is sharp, yet indescribable; an intricate mixture of a dull ache so deep you’ve likely never felt it, and what I can only explain as a hot knife slicing apart the bone and muscle.

This is how I begin every day. Some are worse, usually when the weather changes rapidly, often caused by a rapid decent of temperature or barometric pressure. And while those days can wreck my body for most of the following week, it’s possible that I may be in severe pain even if others aren’t; including when the weather is supposedly kind to joint pain sufferers.

Despite working, living, and writing in the public sphere, I’m a decently private person. I’ve never discussed my condition in public, but today, I choose to join the voices of those who are also suffering. May is an important time: our awareness month.

I’ve cried, prayed, spent countless dollars on western medicine, all to finally realize that life will never be normal again. I’m among a handful of patients who fight an incurable, chronic disease.

I have Ehlers-Danlos Syndrome.

Chronic Pain as a Lifestyle

Over the last decade, I’ve fought for this diagnosis. Because Ehlers-Danlos Syndrome (EDS) affects fewer than 200,000 patients in the U.S. annually, it lacks the profile, and thus, support structure enjoyed by other illnesses. This isn’t something you consider often, but the numbers don’t lie.

Take Arthritis, a condition with symptoms common to EDS sufferers, which affects roughly three-million patients in the U.S. Looking at the Arthritis.org Drug Guide, I’m stunned by how many helpful, main-stream drugs are available. But this doesn’t only show the prevalence of certain industries, designed to serve a singular illness community; it highlights EDS’ relatively insignificant numbers, and links funding to awareness.

EDS lacks the industries that have formed around other, more popular conditions. Like it or not, the Arthritis Foundation and other foundations like it, are the most important patient advocates. Without proper funding, interest in research slumps; which in turn, ensures healthcare providers (and the medical community at large) remain ignorant. EDS patients, some of whom are deathly ill, must pay with their lives instead.

I said earlier that my diagnosis, which was the result of a relatively non-invasive blood test, was a decade in the making. That’s no lie: I’ve poured more into this journey than almost any other part of my life. A decade is a very long time, but if Doctors are to truly understand genetic illnesses like Ehlers-Danlos, and on the way improve public health, they must learn and use proper diagnostic criteria.

Speaking personally, I’ve was misdiagnosed for nine years. And while it may be shocking to you, it’s the reality for many of my fellow Zebras.

My story begins with what is commonly referred to as growing pains, that dull ache that bookends rapid growth in children. But the pain stayed, even as I left adolescence behind. My doctors never listened, never once considering that a child with persistent joint pain could be problematic. Never mind that I was in pain every day, and exhibited many signs of a connective tissue syndrome — I would “grow out of it.”

As an adult who finally secured decent health insurance (thanks to the Affordable Care Act) I’ve seen countless doctors and specialists, all of whom summarily dismissed my symptoms, often telling me to go home and rest; that my lifelong chronic pain condition would unexplainably improve. It didn’t. And for most of my life, I’ve suffered through the ever-present thrum of pain. It never relents.

Some diagnosticians would say it’s all in my head. That, at some point, my body decided it liked pain, then quickly created a new, dedicated highway system just for pain. Perhaps they would cite my mind as the cause of it.

While we’re just learning about how chronic pain affects communication in the brain, nothing could be farther than the truth. Chronic pain sufferers aren’t head cases. Researchers are filing data that proves the pain is real, and whether these records are being kept in true scientific fashion or are purely observational, the diversity of reporting still validates our suffering. Our medical community would do well to catch up.

What is Ehlers-Danlos Syndrome

You’re probably wrestling to understand, having finished the last section as confusion buzzes in your head. I sympathize, having recently ingested a similar deluge of information. I have learned as you just did, mostly because my medical team made their lack of information quite clear.

So, for me and you both, here’s the basics. Ehlers-Danlos Syndrome, is a genetic connective tissue disorder that affects my ability to produce collagen, a main component in muscles and joints. Or, perhaps stated more clearly, I can produce it, but instead of creating an elastic compound that is capable of absorbing impact and returning to its original state, my collagen is brittle and cracks easily. This faulty collagen manifests itself in many ways, contributing to my abnormally stretchy skin, and is the root cause of constant pain in my muscles and joints.

I often describe EDS like living in a house made of friable bricks. Whether the bricks were poorly packed, over fired, or rendered defective though other means, one fact remains: no contractor should work with them.

But because our bodies are, as one of my massage therapists so kindly put it, the “smartest dumb machine,” my internal construction crew marches onward. It never alters the blueprint. It continues, one molecule after another, to churn out perfectly flawed copies of the original. And because this defective copy is used in so many critical bodily systems, chronic pain is nearly inevitable.

The Fight Begins

I received my diagnosis in October of last year. So far, I’ve kept it silent. Up until now, only a few close friends were privy to the struggle. This is because I was afraid. Information this potent can be devastating, and often takes time to fully comprehend.

For me, some concerns were relieved by the diagnosis and others were exacerbated. Clearly, I could now treat my pain with specialized drugs rather than dangerous over-the-counter medications, correct? Perhaps additional options would unfold. I was so naive.

In reality, none of these events transpired. I learned via a phone call with my referring Doctor’s nurse, who, along with the rest of my medical team, was unsure what the diagnosis truly meant. This was after they received and then unexplainably held the test results for several weeks before notifying me. During my appointment, a few weeks even later, I was handed a paper about my condition and dismissed. There was no discussion, no concrete answers. My care team seemed wholly unprepared to walk with me through such news, so they clammed up and said almost nothing.

After doing what felt like combat with my medical team, I went home to research further, and came face-to-face with a difficult reality: this disease has the ability to threaten my career, should it take a unfavorable turn. In some ways, it already has, and I’ll write more on that (and how I’m coping with the changes) in the future.

Now while my work hasn’t been affected to a great extent, my condition should never come first, in either personal or business affairs. My work speaks for itself. I don’t want to be hired or dismissed because of my illness.

This is the main reason I’m an entrepreneur, or at least attempt to be.

But should I enter your establishment, I’m not asking for special treatment. But what I am asking for — what hundreds of thousands of other Zebras are likely requesting too — is a chance to be seen for ourselves and our talents, not just as someone who seems ill a bit too frequently.

I am not the syndrome. The genetic mutations that cause my pain were present before I was born, and sure, ignorance will continue. I also recognize my privilege, as a white male, but even that is irrelevant to Fear.

In a world that values productivity and efficiency above all else, it’s hard to reckon with chronic illness. In response, a lot of us choose to be silent. We don’t discuss our condition, because we’re afraid of what someone might think. I can’t do this any longer. I must speak.

A Positive Outlook

2016 looks good, my friends. I’ve had a few flare-ups in the first few months, which means been disconnected more than usual. But the latter part of the year is shaping up to be positive. A good life and less pain is all anyone can hope for.

Like many other Zebras, this syndrome also prepared me for battle. I don’t give up easily, so while it may take a chunk of my energy reserves, I’ll still be here, fighting for recognition and healing. Because that’s what we all deserve.


Photo credit: Jon Mountjoy. Used under a Creative Commons BY License.


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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.


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