Author’s note: This is a revised version of a bingo card that I made some time ago.
While I don’t feel like I should be required to justify the lowermost right square, there was some confusion and pretty ooky pushback when I posted version 1 on my own blog. I’ll explain that square anyway, for CMA purposes: I am aware that pot works for many people with chronic pain, and personally have no issue if people other than myself use it. I’m an advocate of finding what works for you; whether it’s a pill, plant, pilates-esque routine, or something else, your course of pain management should be your choice.
What I am referring to with this bingo card — as a whole — is the commonplace, rather irritating tendency of some able-bodied people to suggest — without knowing about the medical history of (or, indeed, much about) the person they are “trying to help” — remedies or treatments that may be totally inappropriate for that person, due to various (personal) reasons. In short, what works for you may not work for me, and vice versa; how I wish I could have articulated this to the folks who have “helpfully suggested” that I smoke pot or obtain other illegal “meds” to help with my pain!
Okay, explanatory note/rant over. Onto the bingo card! I hope you all have your chips ready.
Special thanks to Ouyang for suggesting the “Diet and Exercise!!1” free space.
Text translation: card has white text on a black background. Title (in white) reads, “annaham presents: Invisible Illness Bingo 1.0,” followed by “Now With Straighter Lines” in red:
First Row, Square #1: All that’s keeping you from being healthy is a positive attitude!
First Row, Square #2: My ex/friend/co-worker had that, but he/she was just a hypochondriac.
First Row, Square #3: Maybe if you lost weight/found a man/read The Secret, your problems would be solved.
First Row, Square #4: Why can’t you just suck it up, get out of bed, and find a job like the rest of us?
Second Row, Square #1: Lucky! You get to stay in bed all day.
Second Row, Square #2 (middle square): Free Space/DIET AND EXERCISE!!!11
Second Row, Square #3: You don’t look sick/you’re just complaining too much
Third Row, Square #1: Obviously, you get something out of being sick. Otherwise, you’d get better!
Third Row, Square #2: If I haven’t heard of it, then it doesn’t exist.
Third Row, Square #3: But I went through hard times too, and I got through it. Let’s talk about what a great person I am.
Third Row, Square #4: You have it so much better than some people! Think of the starving children in Africa…
Fourth Row, Square #1: Let go and let God/Power of prayer/God is punishing you
Fourth Row, Square #2: You just want an excuse to be lazy and have people pity you.
Fourth Row, Square #3: Why haven’t you tried crystals/vitamins/other dubious “cure”? IT REALLY WORKS!!!
Fourth Row, Square #4: Smoke pot/take illegal drugs. It will totally take care of your pain, man!
Also posted at Ham.Blog
Thank you so much for posting this! I don’t have chronic pain, but I have pretty severe anxiety and I have gotten every square on this.
I am glad you clarified what you meant by the bottom right hand square. I totally get what you mean – marijuana makes me feel normal for short bursts of time, but suggesting it to everyone with a disability is just obnoxious.
.-= snarkmuffin´s last blog ..Well, hello! =-.
Brilliant. For my personal version of this card, I’d want to add this comment I’ve sometimes gotten from teachers: “I’ve decided to refuse you this accommodation you’ve requested — FOR YOUR OWN GOOD!”
Minus the speech disorder (which is kind of unavoidable, really) I’m very much not out about my disabilities in RL – hoping for that to change soon – and none of them are illnesses but I’ve still run into waaaay too many of these. One particularly unfond memory is an actual speech therapy whose core concept was “Obviously, you get something out of stuttering. Otherwise, you’d get better!” – they disguised it via talking about Jung a lot, but that was the idea. I sat in that presentation wondering why nobody was just walking out on them because it was one of the most insulting things I’d ever heard. (If this happened now, I’d do it! Sadly I was less courageous back when this happened; I was waiting for someone else to do it.)
I’m deaf, and I’ve still gotten a fair number of these squares >.<
There should be extra prizes if we can cover all the squares and still, somehow, refrain from doing bodily harm to the speaker.
.-= NTE´s last blog ..It’s November… =-.
Oh lovely. I’ve gotten every single one of these sqaures (except for the one involving The Secret and finding a job because luckily I do have a job)…in the past year alone! I think a few were mentioned to me just last week. Yay me! 🙁
Now what’s my bingo prize?
I think I’ve had all but two of those squares.
The one I’d add is, “You manage so well (so don’t bother me about it).”
You know, I was just thinking about how there should be a disability bingo card, and lo, FWD (and specifically annaham) has provided!
I love this place.
Oh god, I get all of these on an appallingly regular basis. Especially the pot one–everyone insists it’ll just make my headaches VANISH FOR REAL! They apparently cannot comprehend that I refuse to take any drugs without doctor supervision because I react strangely to a lot of things, and that I refuse to risk having a drug arrest on my record–no matter HOW slight said risk is–because I hope to someday be a teacher. *facepalm*
Good point, peanutbutter. Neuro/physiotypical people say the exact same things to people whose disabilities are not so easily overlooked. I think part of it is the mental model of disability as a way to get special stuff that ‘normal’ people don’t get. It ties in with the idea that people who are actually disabled by the transection of mental and physical conditions (which they may actually concede the existence of) and societal and environmental barriers to access (which many don’t — jokes about wheelchair ramps and parking spaces and Braille on drive-through ATMs[1] abound) just aren’t trying hard enough because they saw someone on TV who didn’t let their conditions make them disabled so what’s wrong with us? Accessibility aids and accommodations are, in this formulation, special benefits; the costs (social/economic/physical/emotional) of these conditions are ignored or discounted.
The normalization of the exceptional is bad for everybody, but it’s especially bad for marginalized people. It lets privileged people off the hook morally because if a marginalized person hasn’t overcome the obstacles they face in their lives to become [whatever marker of success, usually wealthy] it’s because the marginalized person just didn’t try hard enough. There’s nothing wrong with the system. The privileged don’t have to do anything, even as little as feel uncomfortable.
[1] There’s Braille on drive-through ATMs because the manufacturers don’t necessarily know where a particular machine is going to be installed when it’s built. So they put Braille on all machines because it makes the manufacturing process less complicated and less expensive. And if the comedians (professional or amateur) weren’t so caught up with how funny they were with the ‘blind people can’t drive!’ thing and thought about how these things worked they might have worked that out for themselves.
Of course getting Braille signage consistently placed so that people who need them can find them without too much trouble is an ongoing thing. But accommodations that satisfy legal requirements are not the same as accommodations that are actually useful, and many people and entities seem to feel that satisfying the law is more than enough and asking for useful accommodations generates a lot of pushback. Which I’m sure most if not all of us have run into.
I win too! And I agree with NTE 🙂
ARGHH flashbacks to when I was first diagnosed with depression. My mom made it her top priority to get me to admit that it was possible that part of me “enjoyed” being depressed. She thought it was a great victory when I did. Of course, I already believed that, because I already believed that I was a bad, bad, lazy, selfish person who wanted, deep down, to fuck up everyone’s lives.
I’ve gotten all of these, except for the pot one. Yay! And I second Lexin’s suggestion.
BINGO! What did I win?
The weirdest suggestion for a miracle treatment for my Ehlers-Danlos was collagen injections, like the ones for cosmetic purposes. But it was from my grandma, who also thought that someone had kidnapped the fish in her pond. They were hibernating. So, considering the source, I let it slide. 🙂
One of my few unadulterated pleasures is eating good food. I might throttle someone if they suggested a grain-free or sugar-free diet.
I’ve heard quite a few of these, but I’m sort of missing “Have you thought about how difficult this is for me?”
Because I love nothing more than people taking my problem and making it their’s. And of course that is my fault too.
@Rodo – yes, that was my first thought, too! But I’m missing two squares (God and Pot) so maybe I’m just a lazy sickie looking for an easy way to win Bingo. Hardy-ha-ha-LOL.
I think I’ve got almost all of the third row from one professor. I don’t think he’s said the “starving children in Africa” one, but he has suggested pot.
I think the strangest treatment that someone has suggested for my Ehlers Danlos Syndrome is to stop eating eggplant and tomatoes. I’m already vegan — I’m not about to start cutting out vegetables, too.
It’s kind of mixed up in my head how many people have actually said that to me, how many people have implied that to me, how many people may or may not be thinking that about me, and how much I’ve thought that about myself. But yeah, each and every one of those squares is making me feel a familiar kind of depression.
I think a lot of this also has to do with the fact that appearing to be “normal” and “overcoming” your disability is considered the pinnacle of achievement for disabled people in our society. So people think they’re being complimentary when they say some of this stuff. (eyeroll)
.-= Sarah´s last blog ..On Passing and Not Existing =-.
Ruchama – and potatoes and peppers! They’re all nightshades. There is some talk that the alkaloids in nightshade foods may have an impact on joint function, but I don’t know if I put any stock in that. Maybe because they’re so tasty.
Oh, the religion thing.
I left class early because I felt like … barfing, fainting, taking a nap, just not sitting and listening to anthropologists talk about their job! (Reminder to self – stop taking anthro classes!)
And on the way to my dorm, got accosted by some (I assume lovely) people who wanted me to go to their bible study. The majority of my friends are what you would call evangelical Christians, or you know, they’re southern protestant baptist Christians. We leave each other alone – when I had dinner at one’s house, they never told me to look to God for help. (Though, since the family had experience with chronic illnesses, they had some tips and stories.)
But the worst was when I was hospitalized in the Adolescent Behavioral Psych Ward. Where, because of money issues, we did not spend time with nurses or doctors, but a man who told us he’d see us in prison (his other job) if we didn’t shape up. (I was in for depression.)
Anyways, the first night there, a nice nurse came to check my vitals and whatnot. We chatted and then suddenly – BAM! you need to find Jesus. Worst time ever for a conversion attempt!
.-= Kaitlyn´s last blog .."Responding to your message" =-.
I love pot and it really does help me, but I can’t afford to risk my benefits by using it.
Do people just think we don’t understand our own conditions?
.-= thetroubleis´s last blog ..What It Is To Be A Monster =-.
I swear to you all, if you just diet and exercise all of your problems will be licked away by kittens.
😉
Kittens?
No, puppies!
.-= Kaitlyn´s last blog .."Responding to your message" =-.
Wait, if the PUPPIES can just lick our problems away, why bother with diet and exercise?
(It has to be puppies so I can bring a dog into the dorm. I don’t have kitties!)
.-= Kaitlyn´s last blog .."Responding to your message" =-.
Thanks for your comments thus far, everyone! I don’t have the spoons to respond to each and every one, but I’ll put it this way: Some of your comments on your experiences getting “bingoed” have been eye-opening.
.-= annaham´s last blog ..Guess What? =-.
Not just “get a job” (which I hear every summer from my mom) but “why don’t you drive?” from my sister over and over again. Hey, if you didn’t act as my driver, who would go with you at 2 am for Taco Bell? (Not a drug thing, just a “we sleep past noon cuz it’s hot and summer” thing.)
.-= Kaitlyn´s last blog .."Responding to your message" =-.
However, “get a job” may be gone, to be replaced with “have you contacted Social Security yet?” I’m trying to survive college, one thing at a time!
.-= Kaitlyn´s last blog .."Responding to your message" =-.
“Do people just think we don’t understand our own conditions?”
I’m pretty sure that’s exactly what they think.
I think the Secret one is my favorite. I’ve definitely been recommended that book, I guess to deepen my spiritual connection through manipulating the universe into making me happy and successful? God I hate that fucking book.
I got fourth row, square three the other day from a neighbour who saw me out walking with my stick. His recommendation was celery leaf juice. No joke. I just sort of went “Buh?!” 😛
.-= Anji´s last blog ..Carnivals! =-.
Kaitlyn — [W]e did not spend time with nurses or doctors, but a man who told us he’d see us in prison (his other job) if we didn’t shape up. (I was in for depression.)
D:
.-= softestbullet´s last blog ..*uses awesome linguist icon* =-.
Peculiar thing is I’ve had the ‘get a job’ thing on mentioning my disability, the hearer totally missing the fact that I have a job. Weird.
You know, if you replaced every square on that thing with what Rodo said upthread, I would have enough bingo to win for the rest of eternity. Seriously.
My family (one member specifically) apparently derive great pleasure from assuring me that their embarrasment in the face of my ability (or lack thereof) to navigate situations, is more painful that my pain/tiredness/headaches/inability to focus/inability to speak clearly enough for people to understand me/inability to stand upright/inability to walk/inability to function as a human being etc. etc. etc.
Sometimes I hate being me.
On the topic of Marijuana and its use for pain control, University of Texas researchers have found that cannabinoids may actually make chronic pain worse (in mice and humans):
“In the spinal cord there’s a balance of systems that control what information, including information about pain, is transmitted to the brain. … Excitatory systems act like a car’s accelerator, and inhibitory ones act like the brakes. What we found is that in the spinal cord endocannabinoids can disable the brakes.”
http://www.sciencedaily.com/releases/2009/08/090813170848.htm
Wow, Liam, in this context that’s an astonishing mischaracterisation of that research report, which involved neither marijuana nor humans with chronic pain.
This really brightened my day! I suffer from Fibromyalgia and also have some other autoimmune issues and I think I have gotten quite a few of those squares…. however since I live in a part of Europe where it isn’t that common to use pot I haven’t gotten that suggestion yet… I have however gotten suggestions of trying out other really dubious ”treatments” that and sane person would not even think about trying…
I have schizoaffective disorder which is of course invisible. Right now my meds are working so when people find out I get disability some ask me how I pulled that off, meaning how did I fake illness to get it. I find that so offensive. But yeah, I’ve gotten every one of those except the pot one. And I also often have people dismiss my mood swings by saying everyone has ups and downs; you just need to deal with them.