I’ve thought, many times, about writing a book or something that was basically How To Negotiate Your Disability Without Curling Into A Ball And Weeping More Than Once Or Twice A Week *Or* Murdering The Entire Universe (More Than Once Or Twice A Week).
Here are some highlights:
1) On acquiring adequate pain medication.
Never actually say “I really need strong drugs here doctor, because the drugs you and every other doctor gave me for this injury/illness didn’t work, and also I’ve been in pain for years and I’d like that to stop.”
While there are some doctors who speak human languages and will understand what you’re saying, most, when you say that, will hear:
“I am a ravening junkie werekaiju, and I will come to your house and EAT YOUR BABIES IF YOU DON’T GIVE ME HEROIN.”
You think I’m kidding? Watch a healthcare professional’s eyes when someone else says something like the following. Watch them shut down and back away and tighten up and generally stop treating the person like a human.
So what do you say?
“Well, I hate these drugs that make me *stupid*, you know? One of these so-called doctors — they gave me some pill that made me feel like I was on a whole separate planet for *years*, but I was still in pain! I have things to *do*, doctor. I have a job/family/projects. I wouldn’t be here if I could get my work done the way I am now, but if I can’t do them with the drugs you give me, then what’s the point?”
Make sure to translate this into the appropriate dialect for your area, but note the important points:
a) Reassures the doctor that you’re not one of those ~*eeevil*~ junkies.
b) Reassures the doctor that you’re not one of those ~*eeevil*~ non-productive members of society.
c) Reassures the doctor that you’re not one of those ~*eeevil*~ weak-willed disabled people.
Remember not to use too *much* *correct* medical jargon — they get suspicious about that.
Yes, all of this is necessary a *lot* of the time.
With the above code, 95% of the time the doctors begin *cooing* at me and treating me like *royalty* — and *100%* of the time I have gotten the effective medication.
Pro-tip: If you can add a true (or true-sounding) story about how much you *hate* one *particular* opiate (“Percocet is useless! All it does is make me stupid!”), then you’re probably in the bag.
2) Acquiring mobility devices.
Never actually say “I need a walker/wheelchair/scooter, because I have trouble getting around, and also I have a great deal of fatigue and pain when I try to do so.”
While some healthcare professionals speak human languages and have souls… well.
A lot of them? Will hear this:
“I am a fat, lazy, Fatty McFatFat, and I will continue to expand, much like the universe, until I am a drain on the resources of this great nation and a proof that you, doctor, are a failure. I will never use the mobility devices, ever, and they will gather dust in my home — a mockery of everything you, Morally Healthy Person, holds dear.”
Yes, I know this makes even less sense than the former, but I’ve interrogated these people — the ones who have still have partially-functional souls and minds — and this really is how it works in their adorable little pinheads.
They really do think we’re asking for these devices for… no reason at all.
Or, as my otherwise sane GP put it, she has an honest fear that people like us will take one look at our new mobility devices and throw all caution — and sense — to the winds. That we’ll stop stretching and exercising. That those of us who *can* walk for short distances will — somehow! — decide to *never walk again*. That we’ll decide to — gleefully! cheerfully! blithely! — let every last one of the muscles we’ve been clinging to with our *fingernails* *atrophy* to *nothing*, because…
Because they think we’re idiots, that’s why.
So, try this instead:
"I have a lot of pain and fatigue when I try to walk for any kind of distance, at all, and that’s getting in the way of my ability to have anything resembling an active life. It’s even hard to get to my doctor’s appointments sometimes! I want to do at least some of my own shopping and other errands, and go out with my friends, and at least try to hold down a job, but unless the weather is really good and I’m having a good day in other ways, it’s just not going to happen. I don’t want to stop using my cane/walker/whatever completely — and I *won’t* unless I *have* to, just like I won’t stop doing my PT and OT exercises — but I need something that will let me actually have a life."
Note the similarities to the pain management code — and yes, do make sure you put this in your own words.
But also make sure you keep everything that makes you sound like the Virtuous Handicapable Person you totally are.
Because that’s necessary.
Yes, it is.
Yes. It. Is.
Just as it will be necessary, in many states — make sure you check — to add in this little number:
"It’s just… well, you know that I don’t really have any bladder or GI issues, doctor, but I still… sometimes… on bad mobility days… you know."
Here’s where you look down.
"Sometimes I don’t make it… you know. In time."
Understand that you’ll have to repeat this to, like, four different people. At least.
Understand that some of them will make you get specific.
If it helps, pretend you’re Steph Brown, doing her level best to gross the everloving bejeezus out of her P.E. teacher with graphic stories about her period so she can get out of class and fight crime.
*I* certainly found that helpful.
YOU GUYS YOU GUYS YOU GUYS!
My wheelchair has arriiiiiiiiiiiiiived!
I’ve spent the past few hours bumping into everything ever and also running *over* everything ever and I’m so in love I can’t even deal, because!
I’ll be able to go shopping for necessities even when my legs don’t work enough for the walker or the cane! I I’ll be able to go shopping even when my legs don’t work at all! I’ll be able to go all *kinds* of places even when my legs don’t work!
To doctors’ appointments! Physical therapy! Restaurants! Museums! Farmers’ Markets! Orchards! FARMS! Concerts! Movies! LIBRARIES MOTHERFUCKER!
I won’t HAVE to put all the responsibility on Jack, whose legs barely work any fucking better than mine! Do you understand this? CAN you understand this?
Fuck, I’m tearing up so hard here, and — yeah. This is why I’m reblogging the above. I *know* there are people out there in the U.S. who need this help. People who, like me, have Medicaid insurance — insurance which often feels *damned* theoretical — but still haven’t been able to get the pain management or mobility devices they require.
For those of you in Southern New England, I went through:
Access Rehab Centers — fine PTs, OTs, and speech therapists who will do their *damnedest* to come through for you both in terms of giving you the therapy you need and in filling out the REAMS of PAPERWORK you need. They, in turn, worked with:
Hudson Seating & Mobility — These people are absolute motherfucking HEROES. They come to your home; they measure you gently and professionally; they treat you like human beings; they explain everything about the various mobility devices to you and then ask you *more* questions to winnow down which one(s) would be the *best* fit for you; they *bring* you devices to test-drive; they give suggestions about how to arrange your home for your health, comfort, and safety; they tell you how to get what you need and what you need to say and who the best PTs to talk with are; they go with you to the PT to do more fine-tuning and help fill out the paperwork; they man the barricades when Medicaid tries again (and again, and AGAIN) to screw you —
And then they deliver your baby to your door just as fast as they can.
And, you know? These people all go to conventions and industry meet-ups. They talk to each other. Contact them. See if they can connect you to people in YOUR area.
THEY ARE THE LITERAL BEST.
I? Have been trying to get even a *manual* chair that I’d only be able to use when I had a physically powerful aide to push me around in it since *2005*. My (new as of last December) GP sent me to Access who sent me to Hudson earlier this year and —
PLEASE. PLEASE. TRY TO MAKE THIS HAPPEN FOR YOURSELVES.
YOU ALL DESERVE TO BE EXACTLY AS HAPPY AS I AM RIGHT NOW!
My chair, by the way?
Has green accents.
He’s named Jaybird.
Because he’s JUST THAT MOTHERFUCKING SUPPORTIVE AND INVESTED IN MY COMFORT AND SAFETY AND HAPPINESS AND IF YOU DON’T LIKE IT HE WILL RUN YOUR MOTHERFUCKING ASS OVER UNTIL YOU’RE MOTHERFUCKING CRANBERRY SAUCE.
Reblogging because these kinds of scripts are exactly what I have to use in order to get the drugs I take for anxiety. I HATE doctors. I cannot over-state how much.