It struck home.
Chronic pain is something that we demonize in this country, because for decades we have taught ourselves that anyone who depends on medication to survive and function is an addict, and addicts are weak, failed human beings. (No, they're actually not, but that's a different rant.) And because we equate medical dependency on pain killers with addiction to painkillers, people like me, who don't have mountains of medical history paperwork because our cases are relatively "mild", well, we just choose to live in pain, because getting treatment is adding one too many battles to a life that is already a war.
I have enough on my plate without a years-long fight for disability benefits, or presenting my case to doctor after doctor after doctor, praying I get referred to somebody who remembers the two sentence description of Ehlers-Danlos in the single lecture on chronic pain from medical school. I'm not exaggerating, I've actually been told straight up by the best family GP I've ever had that the single chronic pain lecture is where she remembered hearing the name "Ehlers-Danlos Syndrome". She had to look it up. I've had other doctors blink at me in absolute seriousness and express some variation of, "You have ... what, again?"
The one time I was on pain meds that worked, the doctor I was going to came under investigation for writing too many pain scripts, so he referred me out, to a Rheumatoid Arthritis specialist. Who took one look at the way I was standing (knees completely locked for stability), asked me to touch the floor, and wasn't the least surprised when I did it with flat palms without bending my knees. She knew exactly what I had, and sent me away with a new script for the same medication... at a dose that was half of what I had been taking. Without telling me. And because I was so relieved to have a proper diagnosis at last, because I trusted her, I didn't look. So I ran out (even though I only took it on days I was working), 10 days before I could get a refill, and because it was a bad pain day and I had to go to work that night and was facing a 10 hour shift on my feet, I burst into tears at the pharmacy window. Not my finest hour.
I never picked up that refill, because that one experience of "okay, we've got a druggie" looks from the pharmacy staff and every shopper within earshot was humiliating enough. I toughed out my job (that I loved, and was GOOD at, dammit), for another month, and then I quit because I was losing any semblance of stability in the face of that much constant and aggravated pain.
I haven't been to a doctor for the EDS since, and I can't bring myself to apply for disability. Which means I walk two miles every day, good day or bad, because it's teaching healthy habits to my kids, knowing that I'm buying myself hours of significantly increased pain. It means that my resume, which is 90% food service (I was a manager, for fuck's sake) does not qualify me for any job that I can physically handle, and even though I would totally kick ass as a secretary or an office manager or an executive assistant (because I'm also autistic & keeping stuff & people organized is my JAM), I don't have the experience to be considered against people who have been in the field for a decade. So no job, because I can't face convincing a doctor, and another doctor, and another, and then the pharmacist every time I pick up a refill. No disability, because the idea of that process of apply - deny - apply - doctor - deny - apply - doctor - doctor - doctor - deny - repeat until it goes to court - approve ... the thought of it looms before me and laughs as heartlessly as any cartoon villain. I can't. Just can't. Don't have the wherewithal.
And then I find out that Ohio legislators are thinking about legalizing medical marijuana, which the studies are showing does wonders for chronic pain conditions... except the proposed bill only recognizes 20 conditions where patients would be eligible (you guessed it, EDS didn't make the cut), and even then it's so restrictive as to make consistent pain management nearly impossible...
But sure, go right ahead and judge me because I'm not a size 6 and there's a pint of Haagen Daz in my grocery cart. Go ahead and tell me "just apply for disability, since you're so sure you qualify", when you don't know that the genetic test for my condition isn't reliable because they haven't fully mapped out the human genome yet, so they have to go with a clinical diagnosis, which means I am at the mercy of the doctor, who may or may not have the slightest clue what Ehlers-Danlos is or how it presents or what it means for quality of life. Go ahead and tell me how self-hypnosis or prayer or crystals or dietary supplements or therapy or massage or yoga or gastric bypass (yes, the fat-shaming was awesome) cured your "constant pain". Go ahead and tell me I should just suck it up and get a job. Go ahead and tell me "wow, I'd love to be a SAHM, and with a sister living in to help with the kids too! I'm so jealous!" Just let me inject some ground up glass into your joints and have you walk around like that for a mile or so. Then we'll talk.
We can't keep ignoring and shaming chronic pain. It is destroying lives, and treating people like criminals and failures because they'd like to be able to stand or sit or breathe or work without hurting leaves far too many with nowhere to turn.
