prismatic-bell:

frontier-heart:

snow-anne:

lonewolf574:

doctorscienceknowsfandom:

teland:

sirida:

branwyn-says:

teland:

teland:

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?

Try this:

“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!

Chair!

Freedom!

FREEDOM!

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 —

WHAM.

Yeah.

YEAH.

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.

FUCKIN’ A.

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.

I hate going to the doctor. I can’t seem to do these scripts no matter how many times I practice, and it’s so frustrating.

Hi, sirida — I popped over to your blog and read your tags on your reblog, and, well, I’ve BEEN THERE! I’m so, so sorry you had to deal with those fuckheads, and it really just sent me back to some horrible places in my medical history.

Here are some things that I should probably make a larger post about Dealing With Your Medical (Un)Professionals:

1) If you *can* go with someone else, *do* go with someone else. Not just anyone else — someone who knows your health issues, and understands your health issues (mental or physical or *whatever*), and believes in you *and* your health issues. This person might be your lover, or your friend, or your fuckbuddy, or the fancreature visiting you from London that week, or your pastor, or WHOEVER.

The important things are that you share a mutual affection and trust with them, that they understand your health problems at least as well as you do, and that they are capable of stepping in to have your back when the asshole doctors/nurses/whoever are giving you shit.

For me, this person is my spouse Jack. We take this role for each other *all the time*. Happily, we’ve reached a point where not *all* of our medical professionals require a tag-team approach, but you better believe some of them do.

*If your medical professional says that you medibuddy cannot be with you when you are having your consultation* (as opposed to, say, your CT scan, or MRI, or X-ray, or whatever — THEY CAN TOTALLY BE WITH YOU FOR YOUR VAGINAL ULTRASOUND, PEOPLE! DON’T BE FOOLED!), then you either put your foot down and tell that fuckwit that they’re dead wrong? Or you explain to them that they aren’t your doctor anymore and you let them watch you strut right out the door.

Motherfuckers.

In my experience? They pretty much always back down and let your medibuddy in.

Good way to find a potential medibuddy: Depending on where you live, your level of disability, your insurance, etc., your statewide nursing organization/general healthcare clearinghouse (here in CT, it’s Husky Health) may be able to provide you with a nurse who will work with you *personally* and either come with you to your appointments, or, after you explain to them over the phone how your doctor fucked the fuck up? They will damned well *call* that fuckwit on your behalf and wreck shit.

Call 211 and see what you get!

Now, once your medibuddy is in the room, some doctors will be utter pricks and like “I need to hear this from YOU.” Or, completely contradicting themselves, they will ignore your protests entirely and yell at your medibuddy — “Now listen here — I will talk to the patient and ONLY to the patient.”

This is where the *real* script comes in:

“Oh, I’m sorry, doctor, but I’ve terrible trouble with anxiety when it comes to health issues, and [medibuddy] knows everything about my condition. I would much prefer it if you talked to them whenever possible. They are, in fact, privy to all information about that.” [Make sure to ask the receptionists out front for documents you can sign which will allow this to be true.]

AND/OR:

“Yes, I know this is against your office policy, but a) it is my right, and b) I feel it would be a much more efficient use of our time if we did this the way which would not end in me crying in pain and/or having a panic attack.” *insert pointed look here*

AND/OR:

“No, doctor, I do *not* need to be admitted into psychiatric care. I simply need you to accede to my wishes and speak to my medical proxy, who is right here. I will answer all questions they cannot, of course, but I prefer — as is my right — for you to direct the lion’s share of questions to them.”

Honestly, though? If they fight past the first scripted answer? You probably need a new doctor anyway.

But yes, politeness, firmness, a *hint* of sarcasm to remind them of your humanity and the fact that you’re a person who is currently calm but who is *capable* of messy, inconvenient, and *time-consuming* emotions?

Yeah, this often works well.

2) If you can’t find a medibuddy/your medibuddy is currently unavailable/your medibuddy is as bad at remembering their lines as you are?

Honey, this isn’t Broadway!

Think of it as more of an open-book exam.

Take notes about *exactly* what you want to say. Write it down. Bullet-point in neat, pithy little catch-phrases if you have the kind of medical professional who actually reads the charts the techs and nurses hand them before they start prodding at you (of course, if you had one of those, you probably wouldn’t need *this*…), or just however is easiest for you or your medibuddy to read if you can’t.

“I have some notes here that I brought to stay organized…”

If the medical professional balks — and, yes, some of them will, because some of them are just that fuckwitted:

“I’m sorry, I have some memory issues, and I wanted to make sure I stayed organized and on-point. I know how busy you are.” *insert cold smile here*

OR

“I often get flustered/embarrassed when I talk about my needs — I hate to whine — and this makes it easier and much, much faster. I hope you understand?” *insert pointedly wide-eyed look here*

OR

“I can be quite forgetful — the last thing I want to do is leave something out and then have to come back a week later and waste everyone’s time!” *insert fake laugh here*

Or something along those lines.

Note how you’re playing to Dr. Asshole’s ego. This? Tends to work. Phrase it in your own words. Put it right on top of your copy of the notes. And your medibuddy’s copy, too.

Though let me be clear — I’ve only had doctors complain about the notes method about 5% of the time. About 10% of the time, they’ve been indifferent. The other 85%? They’ve been downright overjoyed. Medical professionals equipped with still-functioning minds and souls *recognize* the efficiency and utility of this method, and jump right the hell over it.

Especially if it’s typed-up in nice large text.

So, you know, even if you’re *sure* the medical professional you’re seeing is a throbbing pustule on the body politic? Bring a nice, clean, insult-free copy for them just in case.

Re-blogging and signal-boosting, because I guarantee to you, people:

Sooner or later, you will need this. Either you will personally, or your parent/child/signficant other/best friend will. This is part of modern life, one of the major signs of adulthood.

@snow-anne some of this might be helpful

Thanks @lonewolf574 very considerate of you ❤

DO NOT tell them about stuff you read online or heard from a peer, most doctors will take you less seriously and write off what you’re saying. Most doctors only respect other doctor’s opinions, so if you wanna discuss things you heard online then fudge the truth and tell them that *another medical provider* explained it to you like this and it seemed to make sense to you, and then ask them for their opinion on the matter.

If all else fails you can try what I call tactical crying; when combined with all of the above having a small breakdown or even a few tears can go a long way to arousing pity and convincing some doctors that things are as serious as they are. It’s important that you make it obvious that you’re distressed because of stuff such as “I’m trying so so so hard to get my life back and I’m just so frustrated at my lack of progress and I just want someone to help me figure this out” or whatever, then look at them with watery, pleading eyes. Not guaranteed to work, but it’s helped me several times.

Also, it’s well-established that people who take a medibuddy or even just a friend to be in the room tend to get better care (you could google that for sources). If you’re a marginalized person then this is basically *essential*, at least on first-time visits, because having a witness in the room makes it less likely that the doctor will discriminate against you.

Also: never underestimate the power of turning up right after a shower. Don’t blowdry your hair. Because you DO care about being groomed, see, but some days…some days you have to allocate your limited energy resources where you can.