When doctors ignore pain, and new agers worse than ignore it.

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I have frequently been, the past few months, in a state of strong but controlled rage. What anyone reading this has to understand is that the rage is not only for my own situation, but at how large the situation, and similar and worse situations, are, for a whole lot of people in the world. If it were only my own situation… well then I might not need to write about it so much, and I wouldn’t be this mad about it.

At some point I started realizing the back pain I was experiencing lately was familiar. The part that made it somewhat obvious was the kind that starts at one spot in my spine and radiates either upwards or downwards. I remembered that. What made it even more obvious was when the pain was terrible, and I was twisting around into all kinds of positions on the floor trying to find one that took the pressure off the parts that hurt the worst. Then I remembered what it’d been like in my late teens. And I remembered what was done about it.

I’d been able, somehow, to say something that got people’s attention about the pain that I was feeling. It was intense. Almost as intense as it’s been lately. I was having not only back pain but periodic migraines and the pain that is now being called some form of trigeminal neuralgia. I was only able to articulate a lot of it in vague ways, if at all, but I did articulate it.

At one point I was sent to my general practitioner about this. He told me to bend over. He told me that since I was obviously quite flexible, there was no physical problem in my back, and therefore nothing to worry about. (Even though I have a family history on my mother’s side of spines so flexible that they induce pain and other problems.)

Then someone suggested that I check into some alternative concept about this pain. It had to do with energy. There was supposedly a snake curled up at the bottom of my spine. My problem, of course, was that the snake was jumping up my spine, creating all this pain. When it thrashed around in my spine, that created the different positions I twisted myself into. When it thrashed around in my head, those were the migraines. This was an acceptable thing to believe in California. They had therapists for it.

I went to see a therapist for it. She showed me diagrams of the different areas down my spine and what they all supposedly meant. She told me that the snake awakening in me had something to do with spirituality. At one point she told me that autism was just being born with the snake awakened. And the different parts that hurt had to do with spiritual progress or spiritual blockages.

Nobody offered me physical therapy. Nobody offered me pain management. Nobody offered to try to find the source of the problem. All I got was the woman my father dubbed the “snake lady”, whose main advice was that I ought to stop praying and join a cult because there was no way I’d survive — literally, she said I’d die otherwise — without a guru with a long Indian-sounding name and a big following of well-off white new-agers.

Meanwhile, I had been trying to function.

I had had to drop a class in college because I got terrible headaches. (Headaches, I was later told, were a sign of higher spiritual advancement, and I just needed to get the snake to jump out the top of my head in order to get release from this pain, the problem was I just had these blocks that wouldn’t let me.)

I tried to go to university when I was in so much pain that I spent a lot of my time writhing into different positions on the floor, crying, moaning, or screaming. I didn’t know it wasn’t only being autistic, but also the pain I was in, that was keeping me from functioning there. I didn’t even know fully how much pain I was in, or that I was in pain so severe that most people would stay in bed, call their doctor, and not even attempt anything close to what I was attempting.

I didn’t even make it to class most days. I thought I was dumb, weak-willed, and crazy. I felt the pain, it wasn’t that I couldn’t feel it, but I couldn’t connect the feeling to the severity of what I was experiencing, or the limitations in what I could do. I kept straining to do more and more and being able to do less and less. And when the snake lady and similar previous people got hold of me, I began to see myself as lacking in all kinds of spiritual qualities, and began praying desperately for help and guidance (which I did receive eventually, and said guidance told me to get the heck away from all this snake crap) and viewing myself in general as having some horrible deficiency related to the symbolism the assorted snake-obsessed people taught me about whatever area I had pain in.

People around me didn’t see me as in pain, either. Because I was autistic and had spent my adolescence in both inpatient and outpatient versions of the psych system, I was simply proving that crazy autistic people who go off their meds don’t belong in universities. They were perceiving me through a specific lens, and therefore unable to perceive what was really happening, even though it was right in front of them, and if I had been ‘normal’ it would’ve been clear as day to them why I behaved just like someone in severe pain, and why a person in untreated severe pain might not be able to function in a university environment.

I left university and found the snake lady.

And eventually I left the snake lady too. (As I got into the car with my mother after announcing my intentions to do so, she screamed at me and my mother all about how I was making a mistake.)

There was someone else who was heavily active in the same circles as the snake lady. The snake lady looked down on her because of the fact that the disease she had did not go away. The snake lady seemed to see that as a sign of lack of spiritual progress. This person died of the disease she had, still convinced it was a spiritual problem.

It took the pain I’ve experienced the last several months to remind me what it was like back then. I’m now in complete awe of the amount of things I tried to take on in a state so reminiscent of what I’ve been feeling like lately. And I’m also enraged. Not in a way that consumes my life or anything. But a quiet rage that shows up whenever I think about this whole thing. And I don’t think it’s at all misdirected

It’s directed at all physicians who treat some people as if we’re not the same as their ‘normal’ patients, and as if our expressions of pain don’t exist or don’t mean anything.

It’s directed at all physicians who simply refuse to treat severe pain, or to try to find out why it exists.

It’s directed at at the parts of the new age movement that step in where the physicians have failed to, and encourage people to view people with chronic pain, including that which comes from life-threatening diseases, as experiencing a spiritual block of some kind, and thus being either higher or lower spiritually, but definitely not in need of something like, say, pain management or treatment of the actual problem or anything like that. Don’t get me wrong, I’m all in favor of genuine spirituality, and even don’t mind the possibility of genuinely considering where our bodies fit into our religious beliefs, but this is not it.

For me, in this particular case, it was eight years of missing out on possible treatments for severe pain while wondering at times why I couldn’t function. For other people, it can be longer. And for still other people, a disease can take their lives while doctors are standing around doing nothing and the new-age movement is stepping in to tell them their pain either means they’re on their way to enlightenment or they’ve sinned in some way to cause it. There is nothing good about this situation, but maybe writing about it will be one step towards changing it. And doctors, take note, when you refuse to treat this sort of thing, the people who eagerly step in to take your place have an even worse effect on your patients than nothing at all.

Edited to add: Another thing doctors should take note of, is that sometimes the new agers (or whoever else teaches these strange things) have gotten to your patients first, or sometimes your patients have extremely different interpretations of the sensations in their body than you do. I wish I could remember the web page I once saw where a doctor had written down some stories he’d told his medical students.

One of them was about a man who came into an emergency room screaming that the devil was squeezing his heart. At first, the people who worked there didn’t take him seriously, figuring he was “just schizophrenic” (which was, in fact, a diagnosis he’d received at some point), and that therefore any odd perception he possibly had must be a hallucination or delusion and have no grounding in reality at all. They were proven wrong about those assumptions when the man had a heart attack.

The moral of that story is, just because someone tells you that the devil’s squeezing their heart doesn’t mean nothing’s wrong with their heart, and just because someone tells you there’s a snake jumping up and down their spine wreaking havoc doesn’t mean they don’t have some kind of genuine back or neck problems, migraines, MS, referred pain from any of a number of internal organs (I’ve felt pain in the middle of my back from gallbladder disease and reflux personally, and at the time I saw the snake lady I had untreated nerve pain that amplified any pain of that nature to cover a larger area than it did after treatment), or other things that might cause that kind of pain. Whether their perceptions are distorted to begin with, or whether they’ve been taught to view things in a way that seems distorted to you, or whether they just happen to have a very colorful way of saying things, it doesn’t mean there’s nothing behind what they are telling you.

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.

51 responses »

  1. Damn straight. I spent a whole lot of time and a whole lot of money trying to get someone to take chronic pain seriously, and for my trouble just ended up desperately broke with a lot of “professionals” dismissing me as neurotic. Not once did I actually get any serious treatment from a physician — no drugs, no nothing. It was only at an occupational therapy clinic and a chiropractor’s office that I got any respect (and it’s clear why a lot of people end up seeking “alternative” therapies that insurance, etc. won’t pay for), and it turned out I couldn’t afford to go back to them. My dad has this expression, “They’ll believe it if a white guy tells them,” and in cases like this, yeah, being a woman of unusual . . . well, lots of things . . . seems to play a major role.

    They teach you in medical school that pain is what the patient says it is. The proper medical response to “I’m in pain” should never be “Well, I can’t find anything wrong with you, so there’s nothing to worry about”; it should be immediate treatment — drugs, whatever is safe — to try to relieve the pain NOW until its source can be located. I can’t even imagine that anyone, let alone a doctor, would think to do anything but that. When somebody tells me they’re in pain, my first impulse is to do something to make it stop.

    As for the idea that somebody isn’t spiritually sound if they can’t charm away an illness with hokey new-age bullcrap, well — telling anybody that is nothing short of torture. Illness and pain do plenty a number on your mind without the added torment of . . . augh, that’s just such absolute *!#@* . . .

  2. I almost had to stop reading halfway through, I was so angry. I remember a doctor refusing me some medication because, “that only treats the pain. You don’t need that.” Why, exactly, was I in his office that day then?

  3. TheQueen: Oh good grief, yes. I also wish doctors understood that severe untreated pain can cause health problems in and of itself, it’s just not good for the body. And that, while looking around for a treatment for the underlying condition is a really noble goal, in the meantime it’s a really good idea to get rid of as much of the pain is possible/safe/etc.

  4. Oh another thing that pisses me off about this, is all this time I’ve felt like I was a failure, and been treated like a failure by a lot of people, for not doing particularly well walking around and trying to get things done in a state where most people would just (and probably rightly so) declare themselves bedridden or close to it for the time being until they could get to a doctor.

    (And I’m no longer entirely mystified at why my movement disorder suddenly seemed to get way worse and I couldn’t climb trees at the time, which, yes, I was trying to do. Fell out for the first time in my life and broke a toe, too, just to add to things.)

  5. I almost had to stop reading halfway through, I was so angry. I remember a doctor refusing me some medication because, “that only treats the pain. You don’t need that.”

    We saw this done, not to us personally, but to a friend who had been having severe lower back problems. We drove this friend to see a chiropractor who had been recommended by someone at a new age bookstore as being “excellent.” This guy charged about 60 dollars an appointment, and suggested to our friend that maybe the pain was a result of punishment for something they did in a past life (he was apparently a member of the Edgar Cayce Society, which believes that physical problems and illnesses are all “carryovers” or punishments from past lives or something).

    At one point, while our friend was waiting in one of the offices, we went out to the waiting area and asked the receptionists if they could maybe recommend a doctor who could prescribe painkillers or something. They all stared at us in horror. “PILLS? MEDICINE? DOCTORS?” Apparently, even though the first chiropractor we’d ever known worked with regular physicians, this guy was one of those types who believed that nothing in mainstream medicine could be trusted, and only hired assistants and staff who agreed with this philosophy. We got subjected to a big lecture on why Medicine was Always Bad, and why it’s bad because it doesn’t cure anything but just “masks the symptoms,” and that pain medicine is especially bad because instead of curing the cause of the pain, it just “masks the pain.” While meanwhile we were standing over here going “Yes, but if someone is in so much pain that they can barely get anything done, why is it bad to mask the pain while they work on treating the cause of the pain at the same time?” They just lectured us more on why medicine was bad, and then gave us a bottle of White Flower oil, which they didn’t consider to be like medicine for some reason even though it’s got topical analgesics in it.

    (And… we actually eventually ended up finding a chiropractor who lived practically across the street from our friend, charged a quarter of the price, and didn’t try to sell anyone Edgar Cayce bullcrap about pain being a punishment for something bad you did in a past life, and our friend actually did get some help from him. So, yeah, I don’t view “alternative medicine” as a homogenous category that one either accepts everything in or rejects everything in, same as I don’t view “drugs” that way. The problem is that anything outside the medical mainstream does tend to attract more people who will try to convince you that what you’re experiencing is some kind of spiritual punishment or blessing, and you can’t always tell which ones those are until you’ve gotten into their office.)

    Another thing doctors should take note of, is that sometimes the new agers (or whoever else teaches these strange things) have gotten to your patients first, or sometimes your patients have extremely different interpretations of the sensations in their body than you do.

    We’ve even seen this happen with mainstream psychiatry, actually– where people had had someone get to them first and convince them that their symptoms were “all psychosomatic,” or that they were “body memories,” even when those things actually turned out to be symptoms of serious medical problems. The one we remembered was the person who initially refused to see a doctor for symptoms of what later turned out to be MS, because they were convinced that “my brain is just fabricating these symptoms because I want attention.”

  6. I feel for you. I too have suffered with chronic pain and no one took it seriously for years. I was recently diagnosed with Institicial Cystitis (spelling?) and Endometriosis. Both caused major back pain, pelvic pain and weeks out of the month where I could do very little. I am doing better after a hysterectomy. It is so frustrating, the new age medicine stuff. I was told a lot that my problem was mental and that I needed to deal with some past issues for the pain to stop. In other words, “This pain is YOUR fault”. Even though I did not believe it I internalized those hurtful words. We have similar negative experiences with our daughter. She is autistic. Once someone told us she could see dead spirits and that she was gifted in this way. That the spirits were causing her pain. I did not believe this but it totally freaked me out.

  7. Oh I LOVE the “your flexibility is beyond normal therefore you aren’t in pain get out of my office” people. If I could get away with it the next who said that to me re: my back or my foot would be doing a bunch of stuff I find easy.

    Then seeing how much they hurt. Because I am that fed up. May I share your rage? May I show this to the doctors who are ignoring the screws escaping my foot? I can’t feel it, you know, because I have “normal” range of motion and a high pain tolerance.

    The snake lady is still the queen of creep, but I wonder sometimes how doctors manage to blame patients for their (doctors) complete failure to be doctors.

  8. I’d rather hear “I’m not sure, but I’ll try to find out” than faux/wrong “answers”/denial. The former is the road to discovery and better treatment, the latter is far more common. Seems to be due to failure of imagination combined with ego defects. Too common.

    If you don’t fit the mold of how the problem is defined, you might get substandard treatment or quackery. In the world of medicine, neurotypical men are used as the norm, so if you’re a woman and/or atypical, watch out, you may not be treated well or on time. That women die of heart disease at the rates they do today is an example of this. Your above post is another.

    In my twenties, I was told I couldn’t have arthritis despite profound stiffness and pain in one joint (and hyper flexibility elsewhere). A doctor refused to even examine me for arthritis.

    In my thirties, multiple symptoms of classic and prolonged thyroid failure were ignored by my doctor even though I articulated and clearly demonstrated them. Additionally, odd episodes appeared, such as when my spine was so stiff that I struggled just to bend over and diaper a child. It all was dismissed as menopause. A test performed by another doctor showed that I wasn’t in menopause. That was ignored by my doctor.

    In mid 40’s, after going through several doctors and loosing about 2 inches in height, I was finally diagnosed and treated for thyroid failure and RA.

  9. Wow. I don’t think anyone ever tried the new-age crap on me for physical issues, but I did have an experience in college with a really nasty back injury that I had a hard time (a) recognizing for what it was, and (b) getting people to take seriously.

    Initially, I was experiencing what felt like a lot of inertia/decreased motivation, along with occasional dizziness and muscle twitches up and down my legs. I had never had back pain before, so my brain didn’t seem to know how to identify it as a pain source at first…I knew something wasn’t right, but it took over a month before I could go, ow, that HURTS!.

    Anyway, a little while after I first started noticing the muscle twitches and things, I went to the health center at the place I worked. The nurse there took one look at me and told me I was “just stressed” and advised me to take more breaks. I didn’t really know how to take breaks at the time, which was indeed a problem, but nobody even thought to look for a physical cause.

    It took getting off my bike one day and nearly falling over before I was able to recognize that no, whatever was going on was not just “stress” or my imagination. (And even then, I hadn’t made the connection between “icky feeling” and “gee, maybe I shouldn’t be riding around wearing a 30-lb backpack for the better part of several hours a day”.)

    Anyway, to make a long story short, I eventually decided I should go to the doctor. By that point I could barely walk and was having trouble breathing, but apparently the seriousness of what was going on didn’t come across in my tone or demeanor, because I couldn’t get anyone to give me a ride to the doctor’s office. So I walked, and nearly blacked out several times. They diagnosed me with “swollen muscles”, prescribed mega-ibuprofen, and told me not to carry anything on my back for a while. Eventually the muscles healed (I guess…) but I didn’t take a single day off school or work during the process. I felt like any down-time would “jeopardize my future” and I didn’t have any sense of when “most people” would consider it smart to take a break or rest or recover. In retrospect I can imagine that “most people” probably wouldn’t just keep dragging themselves around in the face of difficulty walking, not being able to sit down, having trouble breathing, etc., but I didn’t know or think I had a choice in the matter.

    I thought that I literally had to keep “going” until I couldn’t move at all. So while there wasn’t anyone trying to tell me I had a “spinal snake” or anything, I definitely dealt with a lot of feeling like I must be really lazy and weak because I couldn’t move as fast as I usually did for a while . And initially, I’d just sort of accepted that the cause was probably “stress” or “my imagination”, and it took a lot of really serious physical symptoms to convince me otherwise — and even then, people around me didn’t seem to grasp the magnitude of pain I was in, at all.

  10. In my twenties, I was told I couldn’t have arthritis despite profound stiffness and pain in one joint (and hyper flexibility elsewhere). A doctor refused to even examine me for arthritis.

    One of my speech pathologists had had juvenile arthritis at a time when arthritis was thought medically to only ever occur in elderly people. Because of this, she was extremely careful to take people seriously even if she didn’t immediately understand what was going on with them.

  11. For most people, it often does take experiencing something out of the norm in order to imagine challenging norms, definitions, criteria, and so on.

    However, most feel too much challenge/change as emotionally threatening because reality and identity are tied up with what they think they know.

    They will, however, more readily accept shifts in awareness (see and hear people as they are, wonder, learn, help more…) if doing so is part of a cultural shift in awareness.

    Even doctors seem very subject to this.

  12. I keep wondering how many people in the new age movement (or who are from a culture who support energy/Chi awareness) are actually on the spectrum themselves – that this idea that what you’re feeling is some sort of spiritual thing happening is ridiculous.

    I walked into my local herbal/hippie shop and my ‘energy’ was seriously causing problems for other ‘energy’ people – people who are on the spectrum and have no idea that what they are feeling is actually autistic in nature, not spiritual.

    I am all about spirituality, but there are a lot of undiagnosed Aspergians who could use a wake-up call.

  13. Are they checking for problems with the individual bones in your spine? That’s what it really sounds like; or maybe the discs in between? It sounds like a really short-sighted doctor who didn’t understand that too much flexibility can be just as much a problem as too little–it’s pretty obvious to me, and I’m no more than an interested amateur.

    Pain does have a huge psychological/neurological component to it. Pain with a physical cause will be more or less bearable depending on your coping skills, depending on how your brain’s wired.

    I’ve been baffled by my own reactions to pain for years: I can cut myself seriously and the pain doesn’t seem important; but normal menstrual cramps put me in bed and sore feet from standing up cause such overload that there are some jobs I can’t do just because my feet hurt!

    For me, the mind–and my particular neurology–definitely has a role in how I perceive pain.

    Imagery and relaxation and such can help with pain. Yeah, it’s really stupid to think there’s no physical cause; or to use that as the only treatment. But they can and do help, so don’t ignore them altogether. After all, the brain is where those physical pain signals are processed. Until then, they’re just nerve impulses. Actually, it sounds like you’re doing a lot of that, just by figuring, “Let’s deal with this and get on with life.”

    There’s a lot of stupidity out there thinking you can cure pain with a physical cause by just trying to think the right way. (I’ve met a man myself, who was trying to cure himself–in fact, convinced he had been cured–by thinking the right way… a year later, he died.)

    Mental + Physical. Both have to be addressed. Snake Lady went too far one way… some doctors go too far the other way.

  14. It seems obvious to me, as an interested amateur, that “neurological” would be more closely connected with “physical” (although it sounds as if you’re meaning “neurology” as in “only the parts of neurology that are most obviously connected with thought,” which is not how people using the pain “neuropathic pain”, for instance, mean it.)

    I already know all the psychological tricks for dealing with severe pain, I’ve known those since I discovered them (by necessity) as a kid, if something is getting past those it’s really severe. (And if you think that any pain that is physical in origin can be easily dealt with, then either you have an extraordinarily high pain tolerance or I’m not sure you’ve seen the far reaches of physical pain.)

  15. I recently analyzed a functional imaging study that showed real-time results in patients trained to “think away their pain”. While the study was nifty and neato and all that, the whole time I was thinking, “My God, those poor people! They’re in enough pain that it actually shows up on MR scans, and rather than give them some effing drugs, they’re making them perform like lab rats to get some relief.” Psychological tricks are all well and good when you’ve got nothing better to do, but generally people need their concentration for other stuff most of the time.

  16. We’ve even seen this happen with mainstream psychiatry, actually– where people had had someone get to them first and convince them that their symptoms were “all psychosomatic,” or that they were “body memories,” even when those things actually turned out to be symptoms of serious medical problems. The one we remembered was the person who initially refused to see a doctor for symptoms of what later turned out to be MS, because they were convinced that “my brain is just fabricating these symptoms because I want attention.”

    Psychiatry, IMO, has a lot more in common with “alternative medicine” than with actual science-based medicine – for the most part, it’s based not on empirical evidence but on ideology which is centred around immaterial entities which no one can prove the existence (or non-existence) of – the id/ego/superego, repressed memories, etc. OK, so that’s Freudian psychiatry rather than the currently more popular biopsychiatry, which *claims* to be based on biochemical science rather than ideology, but it’s still just as full of quackery as anything in the “New Age” realm. Thomas Szasz’s “The Manufacture of Madness” is a really good book on that subject, taking as its basic thesis that psychiatry is not a branch of medicine but a fundamentalist religion…

    (Although, that book is, to me, at times infuriating due to its total failure to critique capitalism, and its proposition that “contractual” therapy on a business model is the solution to the problem of institutional psychiatry… but that’s for the post critiquing Szasz that’s in the huge pile of “Blog Posts I Intend To Write”…)

    While nothing compared to the experiences related here, i’ve had a sort-of-similar experience from a GP – after trying to get a diagnosis for lack-of-energy/possible metabolism problems, and getting blood tested for a number of common conditions that could have caused my symptoms (diabetes, hypothyroidism, and some others i forget), the blood tests all came back negative (ie “normal”), so i arranged another appointment with a different GP, because, IMO, feeling the kind of stomach contractions, complete cognitive overload and near-fainting physical weakness that might be expected from fasting for 24 hours at least 4 times a day really isn’t “normal”… the GP (female and Indian, tho i don’t know if either of those things had anything to do with it) took one look at my notes, saw that i had been referred to a psychiatrist the year before for my AS diagnosis, and instantly decided that my problems were all down to depression and essentially psychosomatic.

    I still have the symptoms, plus a few more i didn’t have (or wasn’t aware of) back then, but now know of some conditions that run in my family which might actually explain some of them, so have just got re-registered with a GP to try and get it investigated again…

    I’m actually quite surprised that you got treated like that by a chiropractor – i’d expect it from a homeopathist or an acupuncturist, say, but the chiropractors i’ve talked to (tho i’ve never actually been treated by one) have done stuff with a pretty solid base in physics and biology, and completely within the empirical-science model of “mainstream” medicine – they’ve been more like physiotherapists without the “normalising” ideology. In the UK, you can get it on the NHS, which IIRC you can’t for homeopathy etc.

    TBH i’m probably equally skeptical about both “alternative” medicine (based as it is on religious or pseudo-religious ideologies with no concept of empiricism) and “mainstream” medicine (based as it is on a huge capitalist power structure of drugs companies and establishment doctors with huge amounts invested in capitalism, classism, disablism and patriarchy). I do, however, believe in biology…

    Kev2 – i’ve caused a lot of “New Age” types to freak out or get angry/upset because of my “energy”. IME, it’s more that people who get into the “New Age” stuff tend to be “extreme” neurotypicals, and the “energy” stuff they talk about seems to actually be mostly to do with non-verbal communication on a highly instinctive/subconscious level. It certainly isn’t anything that could be measured in joules or calories…

    Chaoticidealism – i have similar unusual perceptions of pain. Some things that are so minor as to be unnoticeable by neurotypical people put me in unbearable agony, some things that most people would find extremely painful are trivial or even pleasurable to me. I assume it’s because my sensory nerves are somehow wired up differently – which leads me to interesting speculations about whether i might percieve things like colour, pitch, etc differently to neurotypical people too. I guess i’ll never know, as i’ll never experience anything through anyone’s nervous system but mine…

  17. At any rate, when I talked about neurological pain, I was talking about something that could be neuropathic pain or could be central pain (which is really a form of neuropathic pain, but some people separate them). Neither of which have any more connection to psychological factors than any other kind of physical pain: Central pain comes from the brain, but it is more akin to phantom limb pain (which is not psychological) than to a psychological factor amplifying any particular kind of pain, and it usually comes from an injury to the brain that can occur in any number of ways (it’s complicated, I can’t describe the whole thing here).

    Anyway, what those particular kinds of pain do, is they sensitize nerves, particularly in the abdomen, so that any pain felt has a sort of haze of nerves all firing up when they shouldn’t around it. So for instance, for a lot of my life pain from reflux was felt as a burning or icy burning sensation (the sensations of nerve pain in other words) over a much larger area than reflux pain is normally felt over, and with higher intensity as well.

    Taking Neurontin, or for that matter Lyrica and Trileptal, calms down that over-firing in some way so that there is less pain. It isn’t about psychological factors at all.

    And neurological-based pain can be some of the worst pain out there. This is because it’s the pain nerves themselves firing, or the areas of the brain that receive pain firing, often with little regard to whether anything actually painful is happening. A person can no more or less think their way out of this, or emotionally calm themselves out of this, than think or calm their way out of any other kind of pain of that intensity.

    Which is why I was weirded out by the combination of “neurological/psychological” vs “physical”, when it’d be better described as “physical/neurological” vs. “psychological” if a person were going to get into divide-into-two mode at all (or even not mention neurological at all, since it’s a subset of physical pain).

  18. What I wish more people would realize is that the distinction we make between “psychological” or “psychosomatic” and “physical” pain isn’t as cut-and-dried as we think it is. People feel insulted when they are told that their pain is “psychosomatic,” and I think that’s because it has a connotation (whether intended or not) that the person is weak or is making it up. Of course that’s not true. And what I think doesn’t get recognized enough is that ALL pain has a “psychological” component. All pain is processed by the brain. The other things going on in the brain (i.e. “psychological processes”) are going to affect it. I wish we (and by we I mean doctors, the public, and some psychologists) could stop attaching negative moralistic implications to that, or assuming that because some pain may have more psychological influences to it than other pain, it is any less real or any less in need of treatment.

  19. Shiva: I agree. I know many neurotypicals who are outside of mainstream society who find “energy” and Eastern mythologies appealing, but there is a fine line between “energy” and autism.

    One thing that I think also bugs Amanda as much as it bugs myself is that a lot of “hippies” do not recognize gay people. Theoretically, yes, but I’ve been told by one Aspergian hippie friend that she didn’t believe in stereotypes.

    I can’t tell you how annoying hippies can be to a 29-year old gay suburban Aspergian male like myself. I want to tell these people to grow up, even though I know I’m acting like a kid too.

  20. Yeah, Szasz’s comparisons of psychiatry to the Inquisition makes total sense to me. His bent towards libertarianism, on the other hand, does not.

    Well, it depends how you define “libertarianism”. I define myself as a libertarian, because liberty is my primary political value and paternalism is my primary political enemy. (I also define myself as anarchist and socialist, depending on context.)

    On the other hand, i think capitalism is fundamentally incompatible with liberty, which puts me a long, long way from those such as the US Libertarian Party (which i believe Szasz is a member of), who support “free market” capitalism. (“Free market” is an oxymoron as far as i’m concerned.) I’m more with the original European libertarians such as Proudhon or Godwin and Wollstonecraft…

    Szasz’s critique of psychiatry is deeply and fully consistently rooted in libertarianism. It’s his support for capitalism that sticks out horribly and frustratingly as completely inconsistent with everything else that he believes in IMO…

  21. about the snake lady and all new age crap in general…….the saying goes……if there’s a market of some sort for it………….

    unfortunately there is. People pay money for that kind of thing……….which is perhaps what started it in the first place. So it’s been around for a while now……….that, and practitioners of it want to push the envelope………how far can we go? How crazy can we be without getting ourselves committed?

    There are real ancient rituals………practiced by some Indian tribes………they work for their own culture…….when other people try to copy and apply it broadly…………(and they invent their own versions of it too)……….that’s the problem

    We graduated today………..hooray!

    later

    TI

  22. Although I imagine some “new agers” “cure” marketeers may be in it just for the money and never mind if it actually helps — I suspect that some people get into this simply because they actually believe all of it. And when they lecture others about what they’re doing “wrong” and how they need to fix it, they actually believe they’re “helping.” So when people quit trying “new ager” cures, they probably feel genuinely sad that these people “missed out” on something that (in their world view) “really could have helped them” if they had just “tried hard enough.”

    In other words, from the descriptions people are giving here (I don’t really have much direct experience with “new agers”), it sounds to me that at least some “new agers” are prone to the same level of arrogance that some medical doctors are. For some of them, I suspect it’s not just about money. It’s about being absolutely sure that they’re right, and all the ego rewards they get from that. With the money being a nice fringe benefit added on the side.

    Congrats on your graduation, TI!

  23. Reminds me of when I sought therapy to deal with depression after my mother died at age 53…my “therapist” told me that my mother had contracted leukemia because she held on to her anger and that I had caused my subsequent miscarriage due to being depressed over my mother’s death. Thankfully, I wasn’t depressed enough to buy into any of that and left the office and never went back.

  24. Oh good grief, don’t even get me into the psychotherapeutic BS about how pain or injury or illness is just a person repressing something… it’s just another way for people to feel in control over something they aren’t in control over in the end, and it can be devastating when the illness or whatever doesn’t get better.

    I do think a lot of what these ideas stem from and get perpetuated by, is the idea that we can control some of these things more than we actually can, by psychotherapy or by prayer or by joining a cult or converting to another religion or whatever. It’s easier in some ways than wondering if it will ever go away. (And harder in others. I know that it’s been agony being in this much pain and just waiting for the nerve blocks which I didn’t know existed until now.)

  25. Thanks so much for writing this post! This is something that really makes me mad, and you said what I’d love to say more eloquently than I possibly could! Great job!

  26. This isn’t pain-related, but it is related to the attitude you describe here.
    I’ve been steadily losing weight for three years while I actively try to gain weight, which is nearly impossible for me because of a mix of executive dysfunction (which means I simply don’t get around to eating or forget to), anxiety (which causes me to feel too nasueas (sp?) to eat anything), and taste sensitivity (for example, I can taste the difference between milk kept in a plastic container and milk kept in a glass container, and the plastic-taste is so bad I can’t drink it).
    And yet, even if I try to explain at least some of this to a doctor, the comment I always, always get is “You’ve lost wieght since I last saw you- congratulations!” As if it were a good thing. Then, if I say I don’t want to be losing weight and I feel that I’m unhealthy, they look at me like I’m crazy and say “well, you’re still in the healthy range” as if that makes it all better, and refuse to discuss it further.

  27. could ignoring side effects of medication be related to this?

    being messed up in the head from overmedication is a kind of pain……and two doctors, our parents, ignored us completely.

    it took Ivan “saying” “f*** y’all, we’re outta here” and forcing all of us to leave the house, to make them finally get it. He never said those words, just took the corresponding actions.

    Oy vey, life!

    ps. this is totally, totally unrelated, but is having a dirty or clean bathroom in any way shape or form related to how well one can function in school or keep a pet? I say HELL NO, but the rest of my family tends to think differently. It’s so freaking frustrating. I don’t even get home for ONE FULL DAY and they’re on my case.

  28. Another problem I have with the broadly-described “psychological factors”, is that sometimes it’s the pain or illness causing the only “psychological problems” that seem to be present.

    And then, when the pain or illness is treated, and/or ableist scenarios around them dealt with in a way actually resembling justice, these “psychological factors” that supposedly “make it all worse” mysteriously vanish.

    I’ve seen that many times both in me and other people, in fact far more often than I’ve seen “psychological factors” actually contributing to physical problems, which is another reason I find the emphasis on them so dangerous (because it leads to trying to treat something just about backwards).

  29. I have had problems with a burning kind of pain in legs and arms for years. It drives me nuts. I tried DRs and they wont listen. One neurologists said it was anxiety before he even did an exam. I had family with me for ALL appts. and even then the DRs will not check to see what is wrong. It is constant and now I have lived with it for so long it sort of “normal” for me. I cant remember not feeling it. They see my file and see I have a history of psych meds, autism and they “instantly” go to mental health type responses.

    Not to used to commenting alot but wanted to share this. I have yet to have one DR even try to help. People keep telling me to go to a DR and I gave up last year. I dont want to go to offices only to be told that this pain/burning is in my head over and over.

    Kathy/Aspiegirl

  30. A former classmate of mine spoke about how her father had been having back pain for years. No one realized how bad, until he was in an accident. When the docs had him all doped up for the impending operations, this formerly silent, somewhat grim man was laughing, joking, and happily chatting away w/ his family. ‘Cause for the first time in years, he wasn’t hurting.

    As for the pain/psychological bit, yeah. Being in pain will have a negative effect on your psychological well-being. Treating the pain effectively tends to end the problems. I grew up with people who felt I should “overcome” any discomfort. Failure to do so was considered being “difficult” and “troublesome”.

    Oh, and integral? I’m a lousy housekeeper. My cat sometimes complains if I let our bathroom get too bad. But, she’s a happy, healthy feline. And she’s made it quite clear she wants to live w/ me, messy apartment and all. So no, a less-than-spotless bathroom does not mean you’d be a neglectful or otherwise unsuitable pet owner.

  31. What I meant by “neurology” would be “the physical and chemical state of the brain.” (I wish I could edit my posts. Gah.) As in, if your brain works differently, you’ll process pain differently, just like you process (for example) visual input differently. When I say “neurology” I mean a basic physical feature of one’s body, just like the number of fingers and the length of the intestine (et cetera).

    A doctor treating an autistic person cannot make assumptions that their sensory system is the same as an NT’s, because most likely it isn’t.

  32. Okay. When I think of neurology, I think of any sort of nerves. For example, the nerves on my face (which are different from neurons in the brain) and all the stuff I needed done to them to sort-of-relieve the pain I had there.

  33. The people who we now lump together under the heading of “new agers” are another group of people who, historically, have been subjected to hatred, intolerance, persecution, ridicule, and murder.

  34. Just because a group of people has been persecuted means they’re right or non-destructive, though. I grew up very immersed in that stuff and while it is bad that good people get caught up in it, it is incredibly self-centered and destructive while claiming to be the exact opposite (in fact, most of its positive claims seem to be about 180 degrees from the reality), and frequently engages in incredibly arrogant cultural appropriation to the extreme detriment of the cultures it appropriates things from.

    Scientologists have been persecuted, hated, ridiculed, and murdered too, but it doesn’t make their doctrine correct, their practices non-destructive, or either one needing no criticism.

  35. Are you generalizing about an entire (loosely defined) group of people, though? Are you saying that, because of some very bad experiences you’ve had with some “new agers,” and because some of them are definitely destructive, that all of them must be that way?

    Are you saying that the only good people involved in new age stuff are the ones who’ve been “caught up” in it?

    Is it fair that everyone who might be labeled a “new ager” by someone somewhere must worry about being ridiculed, criminalized, or worse, because of the actions of some? (Is this the place to debate or discuss these things?)

  36. I am not generalizing about a group of people. I am talking about a set of philosophies that I grew up around, totally immersed in from nearly all sides, was caught up in myself (which is a fact, not an insult), saw other people caught up in, perpetuated myself as well as saw other people perpetuating without knowing the damage it could do (which is also a real thing that happens all the time, which is why I say people get caught up in it without realizing the damaging aspects), and saw really destructive ideas batted around and really destructive outcomes firsthand.

    I’m not talking about everyone who could possibly be labeled new age (neo-pagans, liberal Christians, etc., I have seen mislabeled that), I’m talking about a set of philosophies that actually are part of the new age movement, and how incredibly destructive they are.

    As I said before, being persecuted does not leave a person or their philosophies above criticism or negative evaluation. So I’m not sure if this is the place or not. I really do think most new age philosophies are destructive and this would be equally true if they were persecuted or if they were not persecuted. I also think it’s pretty destructive in a number of ways to equate criticism of a philosophy or worldview with persecution of those who hold it (if that’s what you’re doing, it’s hard to tell given the questions you’ve now repeatedly asked despite my answers).

    My denomination has been historically persecuted, yet there are valid criticisms of the way we do things, both from inside and outside of our religion, and it’d be wrong to say that those criticisms equate to persecution. Quakers were frequently killed and thrown in jail in the past, simply criticizing our viewpoints or practices (provided it’s done with actual knowledge of what those viewpoints and practices are) isn’t even close to the same thing, and some would argue it’s very necessary.

  37. I’m not equating criticism and persecution. If anything, I’m saying it’s more of a slippery slope. Persecution begins as ridicule. Ridicule begins as criticism. But I’m not sure if that’s what I want to say either.

  38. It’s important to make a distinction between the people and the ideas they hold, though. I’d prefer to say, “These people believe things that are destroying them and others,” rather than just trash the whole group by saying “these people are destructive”. The individual can learn and change; the ideas are the true problem.

    My family is fundamentalist Christian. I’ve never seen so much hatred, sincerity, superiority, and closed-mindedness in the same place as I did when I went to school at a fundamentalist Christian school… but if I looked at the individual people, I saw people who somehow believed they were doing the right thing, that they were helping others, that they were really following the Bible and God’s will.

    I couldn’t find any malice in their hearts at all. It was more like they themselves had been deceived. And most of the time, these ways of living, while they hurt others, hurt the people who held them, too.

    The best approach, I think, is to respect them as human beings, even if you violently disagree with what they believe and what they do. But then, that’s the same approach I’d take with anyone, no matter how evil I thought them to be.

  39. Charles: Are you perhaps trying to refer to a specific *type* of criticism as potentially leading to ridcule? For example, overgeneralized (stereotyping) criticism, or criticism rooted in a lack of real understanding of what one is criticizing leading to criticisms that paint a very distorted picture of what the target person/group/thing is really like? Or … ?

    I don’t know if this helps any in figuring out what words to attach to the thoughts in your head or if this just confuses things.

  40. I have some spiritual beliefs and practices that aren’t exactly “standard” for most religions out there. I’ve heard plenty of people say nasty things about others who believe similar things to myself, that we should be locked up, drugged up, or don’t deserve to live, and a lot of psychs would probably regard some of my beliefs as delusional. However, I do recognize the difference between that and actual persecution. (Psychiatry only counts as persecution insofar as it attacks a lot of differences from “the norm,” including differences in belief, in the same way. But they don’t particularly single out people who believe the things I do, they just categorically treat everything they think is a delusion in a similar way.)

    One of the problems with new age spirituality is that it inherits a lot of problems from the stuff it was based on. A lot of new age spirituality is a slight modification of Theosophy, which had a lot of negative and destructive, not to mention racist, aspects to it, and it also basically stole some of the worst variations of ideas about karma from other religions. Everything bad that happens in this life is punishment for something bad you did in a previous one. If someone abuses you in this life, it’s because you have karma to work out with them. Etc. (And these aren’t theoretical situations either– we’ve known people who were really told those things, and we were told by someone, ourselves, that if we were deprived of something we really wanted in this life, it must be because we had too much of it in a previous one.)

    And yeah, I have met people who held new age beliefs and seemed, themselves, to be really sincere and caring. We ran into quite a few of them at the “spiritual bookstore” (read: mostly new age) where our spouse used to work. But a lot of them did buy into ideas that, from what we could tell, had destructive aspects to them, and there’s a disturbing lack of fact-checking that goes on (like with claims about an unbroken witchcraft tradition supposedly dating from pre-Christian Europe, claims about “Native American spirituality,” or that it’s been “scientifically proven” that crystals emit energy, or whatnot). That doesn’t mean any of these were “bad people,” but there were extremely negative aspects to a lot of what they were accepting as fact.

  41. Mustelid: thanks for your reply, just came back to read this today. My parents claimed that my messy apartment meant I might not be able to handle a cat……..and that apartment had been that way because of stress and overload…..I had to end my final semester as an AA-degree-seeking student well (and I did…..probably BECAUSE I chose not to fight the mess at the time. Energy conservation.)

    I’ve heard the argument before….it is easier to study in a clean apartment (true) you can tell if something has been stolen much more easily if the apartment is clean (true, and a good point my housekeeper brought up which I’d never thought about before)……it’s easier to find things in an organized apartment (true) and several other things that are true, but truth doesn’t always translate into making it easier to maintain a decent apartment. The more stressed I or anyone else here gets, the harder it is to take care of stuff. Plain and simple. It’s frankly very frustrating to me why people don’t understand that. Does anyone have suggestions as to how I might explain myself better? I’ve tried writing notes to my parents……Dad is easier to talk to…..we were having a conversation about this and other stuff last night…..

    are there any posts that might answer this question/talk about it? Thanks….

    TI

  42. Luai_lashire, we can certainly relate to your post about eating issues…..its totally an executive-functioning thing or anxiety. I hadn’t put those words together in my mind until reading that…..but yeah, that’s exactly what it is. We are always grateful to anyone who can write about similar experiences to ourselves, since alot of the time, words don’t come together so succinctly about whatever any one of us is experiencing at the time……thanks.

    TI

  43. I’ve read new age books and it doesn’t seem to me that most new age philosophies are destructive, though I have never experienced any new age therapies.

    While the new age movement is shallow and materialistic, and there is a good deal of nonsense in it, it is also idealistic and some of it I find attractive. It shades into movements like ecofeminism, Green politics, Green spirituality, Wicca, alternative medicine and transpersonal psychology. Because it is vague and amorphous people can easily find something in it with which they agree.

    The book “Women, Sex and Addiction: A search for love and power” by Charlotte Davis Kasl (1989) has a favourable mention of the new age movement. It is a wise and compassionate book. There is also a brief description of Kundalini yoga. “Kundalini stands for female sexual energy represented by a coiled serpent in the form of a flower resting at the base of the spine. When the serpent uncoils, energy rises through the body, awakening pure knowledge and a state of bliss, and sexual energy is transformed to cosmic consciousness.” The author, who is a Quaker, would be appalled at the attitudes of the “snake lady”.

  44. I broke my tailbone in the 7th grade. I couldn’t get anyone to believe me about it until I was in the 10th. They just kept telling me that I had a low pain threshold and should get over myself.

    Right. That was why I sat on the sides of seats for 6 months. *rolls eyes*

    I have found that I can often talk myself out of sicknesses if I catch them early enough; this also almost always works for stomachaches too; probably because I have IBS and most stomach problems are worsened by stress or worry.

    I went to a counselor one summer, because the preceding semester at college had left me more often than not in a very suicide prone place. The counselor said that I seemed calm enough, and since I wasn’t acting out or whatever words he used for being more openly emotional, it meant that I must be fine and should try taking vitamins or something. That’s the closest I’ve ever gotten to actually committing suicide and this guy says I’m fine??? All because I wasn’t emotional enough; just because I didn’t come in weeping or something. *kicks angrily at something*

  45. Western scientific medicine has tremendous cognitive authority. That is the authority to have one’s own description of the world taken seriously, and believed and accepted as true. The enormous social authority of doctors and the medical profession derives in a large part from their cognitive authority, and extends beyond the doctor’s surgery and the hospital to the courts, schools and colleges, welfare agencies, employers, innsurance companies and a whole lot of other areas.

    A person who comes to their doctor with reports of dizziness, numbness, vision problems, tiredness, pain – anything which cannot be objectively measured, preferably in a laboratory -is likely to be told that “there is nothing wrong with them”.

    A woman told her doctor that there was a crab inside her tearing at her with its claws and eating her. Because of the state of medical technology at the time nothing was found and she was put in a mental hospital. Many years later an ulcer the size of a grapefruit (which is large for an ulcer) was found in her stomach.

    The myth of control is prevalent in Western scientific medicine, also in alternative medicine and new age beliefs. This is the belief that the mind can and does control the body.

    The myth of control has led to the widespread view that physical illness is often psychosomatic. That it is all in the mind, which means that people with physical pain are not believed by doctors.

    A Canadian study in the 1980s of people with multiple sceloris found that 7 of the 21 women and 1 of the 14 men (the gender difference is significant) were told by doctors that their illness was psychological in origin.

    Until 1988 myalagic encephalomyletis (ME)/ chronic fatigue immune dysfuntion syndrome was regarded as a psychiatric condition. In that year the Centers of Disease Control in the United States recognised it as a physical illness.

    The new age belief that “we create our own reality”, that pain and physical illness are all in the mind, is also part of the myth of control. Although the cognitive and social authority of new age practitioners is considerably less than that of the orthodox medical profession, that authority is sufficient to cause distress and suffering to those people who believe and accept it.

  46. Pingback: The Disbelief of Pain and the Pain of Disbelief « Sanabitur Anima Mea

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