“We won’t help you until you stop acting like you’re in pain.”

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Last night I engaged in a very interesting conversation with a guy who works at the service that helps me out at night.

I was in a lot of pain. By a lot of pain, I mean I was crying and periodically screaming. I don’t cry from pain usually. I didn’t cry when my gallbladder was well into emergency stage, I just went really quiet. If I’m crying from pain, it’s serious. And this pain (and related movement restrictions) was serious enough that a spinal tap was done when I finally did get to the emergency room, because it sounded to them a lot like meningitis. (Fortunately it wasn’t.)

Anyway, I was sitting there trying to string sentences together, while barely able to keep auditory comprehension going, and trying to push through all the pain-induced shutdown to actually talk to the guy. And I’d periodically get the wording wrong or scream in half-pain half-linguistic-frustration or accidentally interrupt him. He told me that he would not help me until I was able to “respect” him the way he “respected” me.

You know… usually, if, for instance, someone’s finger’s cut off, and they’re running around cussing and screaming and not being very polite, other people kind of grasp why they’re acting like that and don’t act like the person is being disrespectful on purpose. Somehow, if the person has some kind of disability label however, this becomes a “behavior problem”. I used to know a guy who went untreated for pain for years, with a dislocated hip, because he had a developmental disability and all the things he did because of the pain were considered “bad behavior”. They didn’t bother looking to see if he was in pain. Hint: Physical pain isn’t behavioral, and treating it as behavioral is a violation of our rights.

(And if I’m not tending to my blog enough, now you know part of the reason. Sorry about that.)

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

30 responses »

  1. I think the whole medical establishment is scared to death of losing control over those it’s supposed to help–i was in a room with a woman giving birth one time, and she was moaning really loud *because she was about to give birth* and a nurse told her to be quiet because she was “being disruptive” to the nurses and other patients. but of course, moaning loudly is a sign of supposedly “loosing control”–it doesn’t fit in with women who listen to machiens to tell them when to push and doctors that tell them when “it’s time” and nurses that have jobs to do that doesn’t include sitting with a birthing woman all day. (which, don’t get me wrong, there’s tons and tons of great nurses out there, but there’s also a lot of no nonsense nurses that thinking that screaming or moaning through birth is “disrespecting” them as well–) I went to a conference that discussed birthing options, and that happens a LOT–the screaming birthing woman (esp if she is poor, a woman of color, a youth, etc) are medicated against their wills, threatened, given cesareans that they don’t want or need–all just to shut down that noise–to make it seem like the establishment is maintaining “control” over the patient…your rights were violated, and I hope you give them hell.

    Oh, and hello, i’ve been following your blog for a long time, but it’s the first time I’ve posted!! :-)

  2. Just thinking about and considering that kind of unjust behavior tends to make me want to jump up and down and violently flap my limbs. And cuss, too.

    I got so upset, a few years ago, at an injustice I’d heard about on the radio, that I jumped all over the room I was in, and came down wrong on one foot and hurt (not quite sprained) an ankle.

    And I don’t think I’m all that autistic.

  3. brownfemipower wrote: “I think the whole medical establishment is scared to death of losing control over those it’s supposed to help–i was in a room with a woman giving birth one time, and she was moaning really loud *because she was about to give birth* and a nurse told her to be quiet because she was “being disruptive” to the nurses and other patients.”

    Reminds me of when my upper arm (among other parts) was broken in a car smash. The doctor who was setting the bone told me to “stop acting like a baby” because I was making noises about/due to the pain. I had had a head injury, too, and wasn’t fully in control of my relations with the world (or my body), but that didn’t matter to the doctor.

  4. I got similar with both gallstones, and my broken foot. Pain does not equal histrionics, doc.

    Sometimes I think they need strategic kicks to remind them of that. Bet they’d cry…

  5. Ack. Well, I am very glad you don’t have meningitis.

    And…I honestly don’t see how being in pain, and showing that you are in pain, could possibly be perceived as “disrespect”. There is no logic that even begins to suggest how to explain that perception.

  6. Good grief, did they figure out what was wrong??? Are you getting better, staying the same? It sounds like you were in a terribe state.
    If things are better then, good… but man I hope it doesn’t happen again.

  7. Ah, yes … this reminds me of the last time I was operated on. I was having trouble breathing coming out of the anesthesia and was cussing up a storm because, well, it HURTS not being able to breathe and they were like, “Calm down … there’s a lot of little old ladies in recovery …”

  8. This resonates with Joel’s blog topic of being loud or quiet. My son is normally very loud with his discomfort or pleasure in everyday events. The loudness is seen, as Kristina says, a behavior problem. Quietness and compliance (together) is also seen as a behavior but in a good way. However, for Pop, being quiet and compliant (to a noticeable extreme) is usually indicative of illness. With the exception of one school he attended, most school staff will totally reward the quietness and ignore the possibility that something is “wrong”.

  9. “i was in a room with a woman giving birth one time, and she was moaning really loud *because she was about to give birth* and a nurse told her to be quiet because she was “being disruptive” to the nurses and other patients.”
    She was probably in the transitory phase of childbirth, i nwhich it is very commong for women to appea to lose control. A good midwife will see this stage as a good sign, that things are progressing and that the next stage of labour, the pushing is on its way. I went through the A-Z of swear words, sang the Philosopher’s song from Monty Python and screamed “just f***king crown you f*****g f*****g b*****d” with my children and was very lucky in that the midwives just found it funny (they did help me as well).
    I know you have said before, ballastexistenz, that you don’t expect to be treated fairly (notr your exact words). But you should do. You have the right to be treated as a grown woman, with respect and if your behaviour is out of character for you then that should tell people that something is wrong.

  10. Amanda, I hope you are feeling better. Or at the very least getting some answers that will get you there as soon as possible.

    You could have been writing about my son, Nik. He;s been struggling with some sort of terrible recurring pain/sensation in his ear/head which causes him to wake screaming in the middle of the night. Not an infection, nothing showing on imaging (so far)…the docs all want to chalk it up to “behavior.” Um, last I checked “behavior” didn’t wake one in a pain-filled panic…consistently. I get so sick of the docs dismissiveness since he is non-verbal and just a little guy (3 1/2).

  11. Axinar: yes, exactly. I remember asking before an operation “Will I be allowed to curse in the recovery room? It’s important.” The answer was “Yes.” No sooner did I wake up in terrible pain and scream “Fuck!” than “There’s a ten year old in here. Don’t you talk that way!”

    I hollered and screamed all the way back to my room in retaliation.

  12. So, have they figured out what’s wrong? I wish stories like this came as a shock. There was a study done on pain thresholds, where people’s perception of pain was measured along w/ relevant nerve activity. The upshot was: people are accurate judges of both their own pain thresholds, and of the amount of pain they’re in.

  13. They still don’t know what was wrong, but the problem (which had been going on all week and getting worse and worse) has so far not recurred. So I’m assuming one or the other of the things they did in the ER stopped it, probably the pain meds.

  14. I was admitted to the Local Inner City hospital ER because of lightheadedness, abdominal pains. My blood pressure was soooooo low that was taken in right away. The only other patients were young pregnant black and hispanic girls who were not in labor.
    Now, I was not in a good state of mind. No eye contact, and I was pacing, hand flapping, and just fearful. I do not like strangers touching me. I am verbal though. I also have excellent medical PPO coverage with Optima. I was placed in a private room. They had a hard time getting an IV in me because my BP was so low-but I remember that once they did the doctor and nurse gave each other a long look without saying anything. It is my belief that they KNEW I was an Aspie because they dimmed some of the lights and spoke very quietly to me. Then they added something to my IV. I do not know what it was and it did not knock me out but they asked if I felt like sitting. And I did. How about lying down. I did. I pulled that blanket over me and sucked up two IVs. I felt so much better with the vertigo and my abdominal pain was better too. I do not have a moral issue with them drugging me. It was a kindness.

    I hazily recall a poor woman with an abcess being worked on in a curtained alcove. Uninsured people laying on gurneys in the hall.

    I might have been the only insured person there that day by the looks of it. I believe I got the level of care that I did because I could pay for it. However, I got an excellent level of care and I think that hospital staff had been trained by someone on how to treat us properly.

    ~Sarah

  15. Pain’s weird. I just figured out (I think, after some 20 years) that to get rid of a sometimes-recurring chest pain, all I have to do is turn my head to my left and it will eventually disappear. It’s like I didn’t know how to process the natural instinctual reaction to ‘paranoia’ or ‘enemy’ at all (which is, to look over your shoulder in fear). At least that’s what I’m telling myself.

  16. I wonder if autistics have weird reactions to pain, in general? For example, when I was still self-injuring, I went to the emergency room with hundreds of cuts, to get stitches; and when I said I wasn’t in pain (which was true), they said I was “in denial”. (I was in the psych ward for ten days.)

    Other things that should’ve hurt, but didn’t: Getting my ears pierced, burning myself on the edge of cookie sheets, frying pans, the iron, a wood stove, etc., getting scratched by a cat, and getting any of the many bruises I discover at the end of a day, just because I bump into stuff a lot…

    But there’s another side to the coin. (Isn’t there always? A one-sided coin is kind of impossible.)

    An emergency room visit had me in such severe pain that my blood pressure dropped and I sweated profusely… thanks to menstrual cramps! BTW, my female organs are perfectly normal–no endometriosis, no ovarian cysts, nothing that could possibly cause such pain. I still miss a day of work when my period starts.

    At my job, where I stand on concrete floors for eight hours, I’ve been known to lose language skills and executive function because my feet hurt. This results in me huddled in a bathroom stall, rocking and trying not to cry. Apparently, NTs can block out sore feet and still function fine.

    Why do I react so differently to different sorts of pain? I don’t understand it.

  17. Maybe because the cuts and the piercings are quick sharp pains that don’t keep on. But period pains and sore feet are a costant pain that can wear you down. The worst pain I ever had was when my wisdom teeth came through. Worse than labour. And one of the reasons was that I knew there would be an end to the labour pain, but with the teeth at the time I didn’t know how much longer the pain would go on for.

  18. Oh my, your reactions to pain, and the exact kinds of pain you mention, are almost exactly like mine. Menstrual pain and having to stand on my feet for a long time (or even a fairly short time) are incredibly painful (sweating, getting hot and cold, fevers, and fainting for menstrual cramps). Only for the list you mention where you’re not in pain, for the exact same list it’s not like I don’t feel the pain. Really I know I’m feeling something that is called pain, and I know that it is pain, but it just doesn’t bother me. I don’t experience those feelings as something that bothers me. Some of them can even feel quite pleasant to me, like bruises.

    I suspected that there would be other people that experienced pain differently, but I never thought I’d see the exact same types mentioned, in a way that’s so similar to my experiences.

    I’ve always wondered why I experience some sensations that are called pain as, well, painful (extremely painful sometimes), and some other sensations that I know are pain (and I really don’t know what else to call what I feel, I do feel pain I think, fairly sure) don’t bother me at all.

  19. Callista: I still don’t really understand why I can be so sensitive to touch or pain either, but perhaps one good thing would be to teach yourself to experience small amounts of pain during those ear piercings, burns, etc. It may sound ludicrous but maybe that will somehow balance out some of the other weird phenomena. But I’m really not sure on this.

    Maybe there’s just some sort of nerve deficiency when you’re on the spectrum. I’ve noticed I have some problems around a guy I know with Tourette’s. He has a similar vulnerability to sounds and the environment that’s kind of electrical in nature. ?

  20. My response to pain seems sort of non-linear. A little pain can drive me nuts (like a splinter), medium amounts I used to laugh in response to as a kid (not because I liked it, BTW)(from being poked with sharp pencils, pinched, etc.), and for larger amounts (shoulder ligament tearing) I seem prone to passing out really easily. The thing about that last one is that the about-to-pass-out feeling usually bothers me more than the actual pain.

    One thing’s for sure: nobody seems able to tell if I’m in pain unless it’s serious and I’m rolling on the floor or passed-out. Wierdness.

    – – – – – – –

    BTW, if I’m on my feet my shoulders & back start to ache after about 30 minutes (I have mild fibromyalgia, I should mention). After about 2-3 hours (varies a lot) I pass out.

    I had a cardiological(sp?) test (“tilt table test”) done, and it showed that when I stood up my blood pressure would slowly drop & drop and then suddenly plunge.

    So, for myself at least, I think that lack of blood flow to the brain is probably why causes the thinking fuzziness when I’m on my feet too long. Also, the body apparently tries to keep blood pressure up by pumping out lots of adrenaline & other things; hence the cold-hot sweat, racing heart, etc..

    Don’t know if that’s related, but thought I’d toss that out there. I’m not female, BTW.

  21. I think everybody thinks they have it as bad as everyone else, which is obviously observably not true if you listen to some people, and watch the news. People who are actually victims tend to not complain unless they absolutely have to, because they want to avoid thinking about their problems as long as possible.

  22. Okgenuine: While I think that can be true up to a point (ie people avoiding talking about problems), I think it’s an over simplistic generalization. People have very widely varying responses to problems and traumas and deal with them in fairly unique, individual ways (though this, too, is only up to a point), both in the immediate aftermath and later on. Some may indeed “deal”, at least in the short term, by avoiding. Others, at least later on, may need to talk, or take action. This doesn’t make their problems any less valid just because they talk more openly about them.

    (For example, a father of a young kidnapped and brutally murdered child, I think named Adam Walsh, turned his personal tragedy into a crusade to get various child protection legislation passed so what happened to his son won’t happen to others. He doesn’t avoid talking about what happened (at least not now, I don’t know about at first), but his problems aren’t any less (or more) real. His son is still just as dead as the son of other parents who happen to deal with their grief and anger differently, and the resulting pain and grief of the loved ones left behind are pretty much the same for all that they’re expressed so very differently.)

    You may also to some extent simply be seeing people in different STAGES of dealing with problems. If you haven’t already read a little something of the basic concept of the five stages of grieving, you may find it worthwhile to google it (denial, bargaining, acceptance etc). It can be a useful concept to understand as long as you keep in mind that, in practice, the distinction between one stage and the next may not always be as hard and fast as the theory sounds on paper, and the progression is rarely as neat as one two three four five either — people can and generally do go back and forth between stages or stages can overlap. (ANY theory of human behavior is inevitably going to be neater than reality, which is always going to be messy and complex … It doesn’t make the theories useless. Sometimes humans need to learn to “see” certain things in a simplified model before they learn to see them in real life. That’s all many, if not all, theories are really intended to do.)

  23. I’ve also noticed two opposite generalizations used to dismiss a problem as non-existent or not that bad or whatever. They have both been used against me in rapid succession:

    “Those who have real problems are the ones who don’t talk about it/show it/whatever.”

    Then… “But how were we supposed to know you had problems? You didn’t talk about it/show it/whatever, therefore you didn’t really have any.”

    These are both false generalizations, and both lead to the exact same conclusion (“we don’t have to deal with this problem because we can explain it away as not existing and/or not being serious”).

  24. Kevathens: My husband has had problems with chest pain that were caused by muscle tension. When he feels any chest pain now, he does stretches, and the pain goes away. If the pain doesn’t go away after stretching, we go to the doc. What you’re experiencing might be something like that, and turning your head stretches whatever muscles need it.

    As for something not hurting when it looks like it should, in my experience an episiotomy experienced without benefit of anesthesia doesn’t hurt after the initial “pinch” feeling. (I’ve discussed this with someone else who felt her episiotomy, and she had a very similar experience. Then again, she’s been diagnosed with Asperger’s Syndrome, and she has odd pain responses, so her experience matching mine might not mean anything at all about what a “normal” person would experience.)

  25. I have a 7 yr old autistic son. He is a great kid. He was diagnosed moderately autistic. Not sure what they mean by that but whatever. He is able to function well in the NT world we have but I have noticed that when he has a loose tooth, the entire week before he looses his tooth he stims more and is more difficult to console etc. The problem for me is that I don’t know that is the problem until he looses his tooth and he is “better”. I don’t think he understands why he starts having trouble. What do I do to help him?

  26. I don’t know your son, so I can’t give specific advice, and my experiences may be totally different. I often don’t understand when I’m in pain, and if there had been some way I could have learned what pain is, that it is a whole lot of different specific sensations, and how it affected me, that would be really important.

    You might be interested in this post that went into some attitudes I’d encountered towards pain that I couldn’t describe as pain, and my reactions to it.

  27. just stopping by your blog to say hi…..also, how do you highlight a post in the body of text, like you did above? “this post” is underlined and in blue. that’s what I mean.

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