by Angelika Byczkowski
One afternoon in summer while riding my bicycle along a fire road in our local forest, I crashed hard. I dislocated my shoulder, broke my collarbone and three ribs, and was knocked out for at least a few minutes. Luckily, my husband was with me.
My first instinct after regaining consciousness was to quietly sneak back home so I could rest, take stock of what bodily damages I’d sustained, and lick my wounds in private. This is a natural instinct of most inured mammals. At the time, I believed I’d only dislocated my shoulder, and I didn’t find out I’d broken bones until days later.
With my husband spotting me, I had to ride my bike over a mile back to the Park Headquarters. There I found a couch in a dark corner and laid down while he rode his bike a few more miles to where we’d parked the car. People were going in and out of the building, but I made sure to look like I was just resting and hoped no one would notice anything amiss.
Any “normal” person would have called 911 and have an ambulance take them to the nearest emergency room, but I was desperate to avoid whatever reckless medical interventions I would have been subjected to. A lifetime of invisible chronic pain from a genetic connective tissue disorder (Ehlers-Danlos Syndrome) has made me fear and mistrust our increasingly standardized medical system.
Over decades, I’ve explored many avenues of pain treatment, alternative, allopathic, and cognitive, and found none effective except opioids. Now I hardly ever see doctors except for my PCP who knows my whole history and prescribes my regimen of medications for pain: antidepressants, antiepileptics, and opioids.
Without knowing anything of my history, I worried emergency room staff would interpret my current pain medication regimen as evidence of addiction, or jump to the conclusion that I had crashed because I was “high” on pain pills. They could easily put some comment about their belief that I was an addict or that I was having “problems” with medication into my medical record and, in this way, make sure no doctor would ever prescribe opioids for me again.
I feared that in an emergency setting, doctors might insist on “putting my shoulder back into place” with some abrupt physical maneuver that would make it worse or even break some other body part. I didn’t trust them to understand how a connective tissue disorder could impact my injuries or their treatments, and I doubted they would believe how sensitive and fragile my non-standard body is. They could assume any resistance to their “standard treatment” was just a lack of cooperation, and this would prejudice them against me.
I was almost certain that unfamiliar doctors wouldn’t be able to believe how much pain I was always in and would assume my strong reaction to being handled without great care was an act. As in so many other emergency rooms these days, they would assume I was a drug-seeking addict and send me home, so why bother?
Instead, I waited three days until my trusted prescribing doctor would be back in the office and then went to the Urgent Care Clinic at the medical group where she works. I had just recently read that concussions cannot be treated with anything other than rest anyway and I had no headache that would indicate a hemorrhage, so I spent the weekend home on the couch, mostly asleep, getting up only for necessary bodily functions. My husband tended to all my needs and kept an eye on me every moment, even sleeping on the floor next to the downstairs couch each night.
Over the weekend it became more clear to me that I was severely injured and needed medical attention, but I was still afraid to go to an emergency room. Getting help would mean letting someone physically handle me in a busy ER when I was in too much pain and too disoriented to defend myself against the best intentions of medical staff.
They would have been trained to check a certain list of symptoms, match them to a certain malady, and then treat that malady according to standard protocols. But standard protocols are devised and established for the “average” patient (the one with one testicle and one breast), not real patients like me and you.
I’ve become wary of our increasingly standardized medical system. My body and its workings are so far from average that standard treatments are rarely effective and can even be damaging.
I’m hyper-vigilant not to do anything that might increase my pain levels or put my access to opioids in jeopardy because doctors are now being told that pain no longer requires “real medical treatment”, only unproven “alternative therapies”.
Especially in my broken and vulnerable state, I was afraid to be “rescued” by America’s ideology-oriented and profit-driven medical system.
Until she was disabled by progressive pain and fatigue from Ehlers-Danlos Syndrome and Fibromyalgia, Angelika was a high tech IT maven at Apple and Yahoo, and a competitive endurance athlete. She lives in a rustic cabin in the redwood forests of the Santa Cruz Mountains just up the hill from Silicon Valley with her husband and various 4-legged kids.
When her pain allows, she spends her limited energy researching, writing, and blogging about Chronic Pain, EDS, and Fibromyalgia at http://EDSinfo.wordpress.com and writes poetry to sustain her sanity.