The 'Darker Side' of Living With a Chronic Illness as a Male

I don’t see many contributions from men on what it’s like to live with a chronic illness. I’ve seen nothing from a man with Ehlers-Danlos Syndrome (EDS). I wonder in part if this is because us “rubber men” often have much less positivity about it. I wish I could write an uplifting article about what I’ve learned from living with a chronic illness my entire life. I’d like to be able to write something that would inspire bendy young boys. I can’t, and even if I could — I won’t. What I do hope is to convey the very worst part of my EDS so perhaps others won’t feel they have to grow up “suffering” from it.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

Being a man with a chronic illness, especially an invisible chronic illness is a fundamentally different experience. From my experience, you get far less sympathy. But it isn’t the judgment from others that matters. Being unable to live up to the ideal I set for myself is by far the hardest part. Not to say that waking up with an intense pain in your chest — doubled over and unable to move, not knowing if you are dying from a heart problem or if you just dislocated a rib again isn’t horrible. But that part ends. It pops back. You take a few deep breaths, you feel the rampaging thud of your heart subside in your chest, and you roll over and go back to sleep. Most of of the complications are manageable. The things that seem to last forever are cigarette paper and emotional scars.

You wake up the next morning, you make coffee, you take your shower. Open up a depressing number of pill bottles and get ready for your day. A day without much purpose. In those hours where you sit around working on this or that, playing guitar until you can’t take the pain in your thumb from barring, and setting and meeting what feel like small, worthless goals. Ticking down the hours until the rest of the world finishes with its work and people trickle into their after work routines and again have time for you in their lives.

From a young age, I remember looking around with envy at what other boys had been able to do. I struggled at the “boy” subject, math. Kicking a ball at recess  to the roller’s mound was beyond me. I knew at the very end of third grade that I had been “socially promoted” to using wide rule paper instead of third grade tab, though I didn’t know that was the name of it. I’ll never forget when my dad, a cable splicer, tried to teach me how to use a hammer. After the twentieth attempt ending with another bent nail and a very dented board, he shook his head and told me,”You better go to college.” Even though I knew it was simply the truth, I understood at that moment I could never follow my father’s red-wing bootprints.

As a man, it still stings. Not my father’s words, as much as that realization though. I see other men with families, careers and most importantly, societal esteem. Things really haven’t changed all that much from recess.

Though I achieved many things that made my father proud of me, though I outcompeted the boys in my elementary school at things more important than kickball or penmanship — it’s those moments from youth that left me with a deep sense of disappointment in myself. In this disappointment, resentment and self-hatred have fermented inside of me since childhood. While I know I am a handsome, funny, kind and  intelligent man, I feel as though I will never truly feel it or believe it. This is the worst part of my EDS — a hatred and judgement of myself I do not apply to anyone else in my life. I have been told many times I am kind, but I don’t believe it because I am incapable of being kind to myself. In the mirror, all I can see is a person I feel contempt for, to the point I have avoided photographs or even brushing my teeth or hair in the mirror for most of my life.

My parents didn’t know what EDS was. The myriad of problems I had, from galloping myopia to so many stitches, they were worried about being charged with neglect or abuse did not lead to a diagnosis. If they had known, maybe I would feel differently now. It was actually my ex-wife, a biology “nerd,” who was the first to diagnose me in high school. I never took it seriously until the complications became serious. The results of a hypertensive crisis led me to be seen by a pediatric geneticist at the age of 30.

Some EDSers focus on how validating it was to get a diagnosis. It didn’t mean much of anything to me. Whether it had a name or not, I’d been “floppy” from birth. What it meant was I no longer had to worry about being hassled by my insurance provider. My acid reflux and coordination were still as bad as they had ever been.  

I do wonder though, if it had been diagnosed when I was younger, would I still feel the same about myself? I can’t provide any advice if you have a boy with a chronic illness on how to prevent these feelings. The fact you are reading this it means you might have a son with such an illness.  If so, I encourage you to talk to a child psychologist about how to prevent the kinds of feelings I have for myself. I hope that this isn’t a common outcome for many boys with EDS or any other chronic illness for that matter. For me, the way I feel about myself is by far the worst complication from being bendy. Like the massive scar on my bicep from when I was four, it’s something that has grown with me.

I just want to finish with, “You better go to college” was the most solid piece of advice I was ever given in my life. My dad did me far more of a favor by recognizing the reality of my abilities than by giving me empty encouragement. I joke now that I’m jealous of people with butter fingers because I have teflon fingers. I’d have been a terrible tradesman, but I wound up being inducted into the engineering honor society, Tau  Beta Pi. I couldn’t have done that without the support and encouragement my mother and father gave me, the protectiveness of my big sister, and the admiration of my little brother.