Doctors don’t like to be challenged with possible diagnoses formed by those whom they consider ‘laypeople’ — that is, everyone but other doctors. I’ve had symptoms for most of my life which indicate a ‘zebra’ disease; rare and commonly misdiagnosed. I’ve traced these symptoms in my mother and others in my family and am chilled with the similarities of symptoms and the heredity propensity. I’ve been waiting for an appointment with one of the few rheumatologists in my city of 2-million plus who has the capacity or the willingness to make this diagnosis since November. He doesn’t have any open appointments until May, at least, which tells me he’s pretty good and, obviously filling a great need that not many other doctors are willing to venture into.
In the meantime, my pain management doctor poo-pooed my observations of the 10+ cluster of symptoms, saying that the likelihood of me having this genetic disease were incredibly small and I was reading online too much. He had made his mind up and there was no point in trying to make my case with a ‘professional’ who automatically dismissed all my spot-on symptoms that to me stood out in bright neon to me.
And anyways, I was told, this disease is genetic and has no cure, only palliative treatments. It’s all like a nightmare out of the show “Mystery Diagnosis”, but unfortunately it’s my nightmare and even family members are telling me to shut up about it and quit dwelling on it. As the author of the article so astutely points out, “it’s a lonely journey… In terms of support, getting sick doesn’t count as being sick until it is recognized by relevant audiences: one’s doctor, one’s family, one’s insurance company, etc.”.
It’s hard to be disbelieved, or even worse, dismissed — as if my logic was faulty and my reasoning was wrong. But I have to know, so I will pursue it as soon as I get my insurance (which I’m currently fighting tooth and nail for) straightened out; another battle that I’m really not up for, feeling as debilitated as I do so often. This resistance on all fronts could lead to me feel stupid but I refuse to do so because I’m not stupid. And I’m not a hypochondriac. I hate going to the doctor. I already have a diagnosed 29% permanent disability — a chronic pain issue that is invisible to someone who sees me only sporadically, and I have that yearly fight when reapplying for Medicaid with the ‘powers that be’ regarding why I’m not working full-time. And worse, I’ve had to fight with Worker’s Comp and the doctor they picked for me for the only pain medicine that allows me to be even close to normal: Suboxone, written off-label because I refuse to get re-addicted to the most serious opiates I was given in copious quantities in rehab after back surgery. Encouraged to increase the dosage to ridiculous levels, the prescribing rehab doctor told me with almost a wink, “Come see me when you get out of here and I’ll keep you supplied”.
Well I didn’t get to see that doctor, but did have to go through several days of sweating buckets and agonizing, tossing-and-turning dope-sick pain because out of rehab no sane doctor would prescribe said opiate at any dosage for me until I and my family literally begged, so the surgeon who permanently screwed up my back finally gave in. Being back on the Hillbilly Heroin turned into a three-year-long stint of non-existence, an almost vegetative state where I sat stoned out of my gourd in my living room chair, my only stirrings to crawl to the bathroom and back: my physical and mental prison. Those three years are a complete mental blur to me and were absolute hell on my family, wondering where I had gone and if I would return to being a semblance of my former self. “The Salad Years”, I laugh and quote from Kids In The Hall. Except it’s not that funny in reality.
Then by chance, I found a wonder drug — Suboxone, only written in the U.S. for detox and for relatively short periods, but commonly used to treat pain in Europe; reportedly 30x stronger than Morphine, Sub doesn’t cause cravings for an increase in dosage. I can drive on it; I can think clearly; I can be a part of the world again.
Now, Worker’s Comp doesn’t want to pay for it anymore after being on a stable dosage for more than 5 years. Too expensive, they say. You’ve been on pain meds too long, they tell me. We want you out of our system because you’re getting a bit too expensive for us and your type is cutting into our bottom line, the for-profit company flunkies say.
To sum up, the title of Drew Foster’s piece for the wonderfully progressive and open-minded e-zine Medium, which publishes articles ‘on the edge’ which other publishers find uncomfortable to say the least, is “On Chronic Illness Sucking”. I thought the article was very well-researched and well-written, and the author compassionate and adamant about changes that need to be made in the attitudes of not only the general public but of doctors and those intractable behemoths, insurance companies. I am glad he wrote the article. I just wanted to offer a first-person on the subject. Yes, you’re right Drew, Chronic Illness Sucks. It Sucks A Lot.