Psychosomatic labels, and assumptions
Yeah, coming up with clever titles is not exactly one of my talents, especially after tiring myself out writing a long post. 😉
This is yet another post built around an attempted addendum to another post. That’s actually one of the things I really like about electronic publishing: the ability to go back and change or add things that later occur to you, or that you just forgot to add. Though I do take this to a point verging on the ridiculous sometimes. *wry smile*
This time, I started adding something to yesterday’s Autism, medication, and seizure risk, but even trying to keep the length down, it grew and went more tangential. So, I decided to turn it into its own post here.
Starting off with a quote from that post for a bit of context:
And these connections are rarely made, and the symptoms are much more likely to be dismissed if you are considered to need psychiatric medications or are otherwise neurodivergent. (And/or if you are a woman.) In one study, 90%+ of immigrant women known to be in a high-risk group for vitamin D deficiency and osteomalacia were initially dismissed with a diagnosis related to somatization–and this was without already being perceived as mentally ill.
There is also the popularity of psychogenic non-epileptic seizures as a diagnosis–with at least 75% of patients who get to hear that being young women:
Seizures in the absence of abnormal EEG-video monitoring readings are widely believed to be caused by sexual abuse.44 This is in spite of the fact that an EEG only measures electrical activity on the first few millimeters of the skull, with even skull and scalp thickness producing variations in readings.45
The quote comes from a good takedown, looking at how the idea has developed over time, despite the absolute lack of empirical evidence supporting it: Psychosomatic explanations for disease. (ETA: They’re pushing microbial hypotheses pretty hard, but the overall point stands: instead of trying to make sense out of more complicated patterns and investigate cause and effect there, it’s much easier to take the “I’m not confused; you’re just crazy” approach. It takes some interesting cultural themes to make this look remotely reasonable as a way to deal with illness–including lingering mind-body duality, with very little idea how to reasonably connect the “two” things.)
All this stuff will give you psych symptoms, which are heavily stigmatized and often misdiagnosed/mistreated. If you are struggling to cope because of autism already, this can look exaggerated and very seriously affect your functioning–which is liable to get further misdiagnosed and mistreated.
It all works together, unfortunately.
This is another area in which an observation from a previous post applies:
On a related note, it’s more than a little sobering to realize that you are better at recognizing and working with patterns than at least 90% of medical professionals. (That is being generous, since just maybe some of them were encouraged into the field by getting to hear that they’d make great diagnosticians! I was planning to go to med school, myself, with that as one factor.) Further throw various pre-/misconceptions and biases in the way of spotting the pattern(s) in front of you, and it is frankly a wonder that as many people eventually get correct diagnoses for any number of chronic conditions, as do. It also irks me that since I have had to recognize/self-diagnose multiple deficiencies on my own–including the D confirmed by a lab test–they are not “official”, and do not count in the stats.
Another example of reliance on widgets doing real harm, when you get down to it.
That also applies to other health problems, though the emphasis in that post was on the poor recognition of vitamin D deficiency, for many reasons including that, being a steroid hormone, it affects pretty much every body system and your mental/emotional state at the same time. When something is affecting your nervous system, that should not come as a surprise, but it too often does.
So, a diagnosis related to somatization is a tempting way of dealing with what you don’t understand–and making it difficult for the person in question to keep confusing you with their complex patterns. They may keep talking about it, but you don’t have to take it seriously anymore; nor do other professionals who read/hear that diagnosis.
From Chronic Pain in Women: Neglect, Dismissal and Discrimination, a decent overview of some gender-related disparities in basic understanding and treatment:
If a physician is unsure of a diagnosis, he or she is likely to try one of three strategies with a patient: (i) normalize the symptoms; (ii) tell patients there is no disease; or (iii) use metaphors to explain the symptoms.88 However, “normalization of symptoms and telling patients that they don’t have a disease is not effective and may even result in more health-care seeking.”89
It certainly creates stigma, and this problem is worse for women because most patients “with unexplained clinical conditions” are women.90
In other words, a physician is liable to respond with invalidation and gaslighting to cover their own lack of understanding. And if you get dismissed like that, you tend to go looking for someone who will listen to you and take your medical problems seriously–which gets pathologized and frequently considered further evidence of somatization and “health-care/drug/attention seeking” behavior. (WTF?! That kind of attention, I don’t need.)
This cluster of diagnoses could be considered a “culture-bound syndrome“, because the basic premises make very little sense outside its culture of origin. Nor does the whole poorly managed mind-body duality it rests on. Nor does the tendency to choke on certain types of complexity, triggering the dissonance that makes it so tempting to simplify things once and for all by declaring it all in a person’s head. (This reminds me that I think I am going to have to go ahead and do a couple of more straightforwardly philosophical posts, to provide needed context for a couple of other things I’ve been working on. And yeah, ways of viewing and dealing with complexity fall in there.)
In the “seriously busted attempts at dealing with mind and body” category, I would include the assumptions that people who have any number of what are considered psychological or psychiatric problems are prone to somatizing, so this explains any kind of pain or sickness they might report. The whole concept of somatization rests on these busted assumptions, but yeah. I have personally had everything from osteomalacia to serious asthma attacks to celiac symptoms put off as manifestations of psych problems (which I did not, in fact, even have)–and this seems to be the norm. I was recently struck again by the absurdity of this, looking into doing some more work on my (C)PTSD, since I have been running into a new wave of problems dealing with this lately. Somatized pain, particularly lower back pain (which gets lumped into this a lot, with the many complicated potential causes and perpetuating/aggravating factors), is pretty consistently considered a symptom of PTSD. When, yeah, no matter what the root cause of the pain is, if you are going around tense and anxious with your muscles tightening up so much of the time, that’s gonna cause further pain and fatigue. If you’re having trouble sleeping and eating well, that’s going to make any health problem you have worse. (And if you’re having trouble leaving your house, you probably won’t be getting much UV exposure…to throw in another link between complicated patterns.) They also know very well that high stress hormone levels over prolonged periods of time are really, really bad for people’s bodies, including in ways that cause soft tissue damage and make them hurt. All this applies equally well to things like digestive problems and severe headaches that get sloughed off. Is somatization a reasonable way of describing this, especially if it pretty much precludes treating the actual pain? Not so much. It just makes no sense, unless you are continuing to split mind and body (and everything else) instead of seeing ecosystem-like interactions all around.
And, if you’re in serious pain from whatever cause, that is likely to make you depressed and anxious. Especially if it becomes chronic. Then deciding that the depression and anxiety are the Real Problems there is supremely unhelpful. Very much the same applies to the supposedly psychogenic seizures: you have seizures which cause what look like psych symptoms, you get further depressed and anxious because it’s making your life hard and other people are treating you like crap for acting crazy, so the whole thing is called psychogenic. And even though having emotional/mental effects from seizures precludes a psych diagnosis based on the same things, just try losing the psych labels even if you do eventually have the “right” kind of seizure under EEG observation and get diagnosed with epilepsy…
Also, the too-common received wisdom that chronic pelvic pain and sexual problems are usually coming from some kind of somatization depends on so many culture-bound assumptions in order to make any sense whatsoever as an explanation. That assumes certain clusters of attitudes toward sexuality and the “uncleanness” of the (usually female) body–and conflicts between mind and body in relation to sexuality and being sexual (or not)–which are far from universal. Actually, that seems like a pretty comprehensive indictment of common social messages, right there, that this would make any sense. And we get right back to the Freudian influence on current ideas about psychosomatic illness… 😦
Then there are the even more straightforward things like the continuing problems a lot of people face with getting doctors to recognize that their symptoms of depression are coming directly from, say, hypothyroidism–as opposed to getting reflexively prescribed antidepressants and told that their physical hypothyroid symptoms are psychosomatic things coming from the depression. (Yes, I do know people who have had exactly that problem, even with hypothyroidism being literally a textbook example of things to rule out as totally causing depressive symptoms.) There is still a lot of stigma connected to anything viewed as mental illness, and especially the average GP will treat any perceived mental illness before–sometimes to the exclusion of–anything else. Even when it’s ass-backward like that.
None of this set of approaches to explaining and dealing with symptoms is actually good for a person’s mental health, BTW. If you didn’t start out depressed and anxious, after dealing with enough of this you’re likely to be.
Additionally, through the same application of universalism and bias discussed in The nitty-gritty: cultural and disability competence in health care, it can be very easy to say, “I don’t understand your pattern of symptoms or the way you are describing, expressing, and/or coping with them; therefore, you must be mentally ill (in a way that only makes sense in my own culture of origin).” That can include describing symptoms in terms of different cultural understandings of how mind and body (and everything else) work together and relate to each other. And it also depends heavily on how the culture in question considers it appropriate to treat people who are considered to have mental/emotional problems–not to mention what might constitute one.
This particularly jumped out at me on rereading the article about psychosomatic explanations, with “In one study, high rates of conversion disorder were thought to be seen in Appalachian males”; it’s not limited to males, and BTDT, have the medical PTSD to show for it. Some of the misunderstandings and conflicting assumptions behind this are covered in some detail in that post on cultural and disability competence linked above–since I have both extensive personal experience of this kind of thing, and have watched it in action.
BTW, from experience I also suspect that the “Appalachian males” thing was viewed as stranger all around, as conversion disorder usually gets applied to women, because IME (and in the face of common stereotypes) there really are not the same exaggerated expectations of gender-based differences in personality and expression, as opposed to being a healthily rounded human being as a goal–and none of it seems to correspond closely to what a lot of people from the dominant culture are expecting. It’s not just me, but people I know who strongly identify as women are frequently perceived as not very “feminine”–and these people may not have seemed “manly” enough and therefore more likely to be viewed as showing poor mental health according to what is expected from dominant-culture men.* I am not saying that this is exactly the same as the kind of treatment that trans* and other gender variant people (deemed to have serious psychological problems by default) too frequently get in medical settings–because it’s not–but I think it’s coming out of the same kind of deep-seated xenophobic reactions to people who bring some bizarrely value-laden assumptions into question.
Also, the bizarre dominant culture memes that women are prone to exaggerating and crying over nothing, with low tolerance for any kind of suffering and prone to making up problems in their own heads to the point of giving themselves severe pain and even seizures apply really fucking badly where I am from; if anything, there is more expectation that Mama will carry on with some level of “stoicism” for lack of a better term, no matter what kind of medical problems or pain levels are involved. If you keep not getting taken seriously and having your pain and other medical problems dismissed, what other reasonable option do you have other than to carry on the best you can–especially when other people are depending on you? Some of my family twists this stuff to the point of the absurd; I have walked around on serious orthopedic injuries, not seeing that I had much choice in the matter, and the twisted versions can also make you run yourself totally into the ground on a daily basis–but it’s easy to see how you’d get them, trying to combine the two sets of ideas which really do not work together at all. (“Must not be lazy. Must not complain. Must not be seen as weak and overemotional.”) See also Disability and gaslighting; this can be another point of intersection, especially when having a XX-based body is frequently treated as if it were a disabling recipe for trouble and pain in itself. 😐
These assumptions are dismissive, misogynistic, and describes reality poorly enough within the same cultural complex they come out of–especially when you look at the paradoxical themes of “women exaggerate and make themselves ill” and “women are tough and better able to suck it up” driving poorer access to things like pain relief. But once you get more “Mama holds things together” expectations going–possibly among groups of people who already “underexpress” pain and negative emotions by certain standards–whew, that’s just EVIL. I have seen it kill people.
And, yeah, this also applies to, say, neurodivergent people who may have extremely high pain tolerances to begin with and express things differently too. (Hell, I did not know that “can you walk on it?” apparently means “without severe pain”; nobody ever explained that, and only a couple of times have I had joints injured so that they just couldn’t support my weight at least over short distances. And it’s kind of rude to keep screaming as they seem to expect from that kind of pain level–even when it’s not a chronic thing.) Combine the two sets of busted assumptions, and well…EVIL EVIL EVIL. And I do not apply that term lightly–and consider the whole concept human-created, by humans for humans.
All of this stuff is not just relevant to cultural differences, but to neurodiversity. If you are not expressing things in one of the narrow range of expected ways–for whatever reason–a lot of people do react badly (and xenophobically) to that. When this happens in a medical/psych context, this can seriously hurt people. Including through their not getting treatment for serious medical problems because their complaints have been chucked into the “psychosomatic” bin. I have seen that in action, too, way too close up. 😦
This is also another reason I am avoiding medical care here; I have run into this problem repeatedly in the UK, with dismissal and assumptions of poor mental health/somatization because I haven’t figured out how to describe things and express pain/discomfort in the culturally expected ways. This would no doubt also apply to the (other) immigrant women with vitamin D deficiencies/osteomalacia in that other study, also in the UK; IME, there really is a lot of deeply ingrained xenophobia, most of it much quieter than the EDL‘s, easy as that sort of group is to scapegoat as the only ones and indeed “nutters”. Lest I sound like I’m picking on the British, substitute “Tea Party”, et al. there, and it applies equally well to dominant US culture–or pretty much anywhere else in the “West”. From the same roots, indeed. But, I do seem to set off certain kinds of xenophobic reactions even more here, or professionals feel more comfortable using this openly in making decisions, especially if you can’t easily just fire them for behaving disrespectfully. Possibly both.
(Indeed, some of the PTSD stuff I’m trying to deal with now is the huge, many-layered medical-related burrito. So that I can, erm, actually get some health care with some hope of self-advocacy instead of terrified freeze-ups and further paternalistic know-better treatment based on that.)
See also What color is your pain?; while I still think they get some interpretations wrong there (they actually use the term “reservation bound”, as an indication–but, it could be “condemned to a reservation“… 😐 ), I have seen the exact same stuff in action and experienced some of it myself. As I’ve mentioned before, my mom got dismissed as a crazy drunk in the ER based on stereotypes and describing her pain with the same kind of metaphors discussed in that article, and sent home with untreated broken ribs which you could actually see under the skin. (People who really are mentally ill alcoholics somehow can’t fall down and injure themselves? *scratches head* Extra baffling, since being unsteady on her pins from illness helped fire the assumption of drunkenness to begin with.) I actually found the article triggering. I don’t have the energy to comment more on it right now, but it’s well worth a read. One brief quote:
But look at what happens to communication when this shared cultural symbolism is taken outside the circle of understanding and thrust under the cold scrutiny of non-Indian clinicians. Burhansstipanov recollects an interaction between a breast surgery patient and a clinician: The patient and her family talked about lightning striking a tree and a big drum pounding harder and harder, but the clinician reported in the medical record that the patient was “uncooperative,” “in the midst of a psychotic break” and “unable to answer pain assessment questions put to her.” He told her to come back in nine months if her pain persisted. Of course, the pain did persist, but she didn’t come back and her condition deteriorated into a complex regional pain syndrome.
Erm, yeah. I have had enough dealings with mental health professionals that I know better than to use that kind of metaphor by now (in basically any context)–but have no idea how else to describe some things. And I do tend toward similar to this, with the “low” rating–frequently a 4, which gave me a dark chuckle reading this, and if pressed I might describe it as a “good number” myself–largely because I can easily imagine worse pain, and have usually been in worse pain (and have also been accused of making a huge deal out of nothing too many times):
“Consider, for instance, a patient who comes in with a ‘4’ or a ‘3’ on the 1-10 [pain] scale yet says he can’t walk, dress or do other daily living activities,” Green-Rashad continues. “Pain is really affecting this person negatively. You may notice behavioral signs–frowning, moaning–or changes in vital signs. I don’t think one parameter can be used exclusively. You have to put them all together.”
And if somebody is having trouble talking to you and/or understanding the questions because they’re in so much pain–and are possibly trying hard to maintain enough control not to start screaming and yelling in your face–that’s not “unresponsive” in a “noncompliant” and possibly crazy way either. 😐 OK, so I did end up commenting some after all.
One of the posts I’ve had in the works for a while deals with the ways accusations/assumptions of mental illness are so readily used to dismiss and discredit people–and make them easier to perceive as anomalies rather than logical products of their own societies. (Yeah, partly inspired by the most recent high-profile example of Anders Breivik.) With any luck, I’ll get that done soon. Have had a lot more ideas than energy to follow up lately, though this does seem to be slowly improving.
* Yeah, I’ve been intending to write more about how this kind of stuff applies to my own gender concept, and how it differs by context, once I figure out how to usefully untangle it from the wider culture-dependent Uncanny Valley-like xenophobia stuff–which in turn probably needs the philosophical background to make good sense. *sigh* (BTW, cultural differences do seem more relevant to me there than neurodiversity-related differences–especially with the much wider range of acceptable behavior and expression all around before xenophobic reactions kick in.) Sometimes I do wish I were actually better at simplistic reductionist ways of looking at things.
And a very relevant thing here, BTW, is what’s (still pretty badly in terms of description and interpretation) outlined in John D. Loftin’s THE “HARMONY ETHIC” OF THE CONSERVATIVE EASTERN CHEROKEES: A RELIGIOUS INTERPRETATION, which can be compared to the shorter version of Hicks’ “Ethic of Neutrality” (which I’ve referred to before):
In his early ethnographic work, Hicks (1969) reported that Appalachians demonstrate what he termed an ethic of neutrality. This is evidenced in four behavioral imperatives: (1) avoiding aggression or assertiveness, (2) not interfering in another person’s business unless requested to do so, (3) avoiding domination over other people, and (4) avoiding arguments and seeking agreement. Consequently, there may be low tolerance for paternalistic or prescriptive behavior patterns.
Compare that (unisex) set of basic organizing principles to what is normally associated with Western masculinity. Or femininity, for that matter. (ETA: also note that one item in the summary list in the “Harmony Ethic” paper is “Ability to endure pain, hardships, hunger and frustration without external evidence of discomfort.”) Also imagine how well that kind of approach goes over in medical (and other) settings that too frequently depend on “paternalistic or prescriptive behavior patterns” and motivation through confrontation and shaming–dealing with people who cannot read your body language adequately, either. And bear in mind that the longer version in the first link–mostly, indeed, trying to get along with other people and avoid impulsive, xenophobic, aggressive behavior–was used to support the idea of a self-sabotaging societal-level mental illness. Big leap to individuals somatizing and having poor mental health in general, even before you throw in other “strange” behavior? Not really.
Yeah, this will probably be coming up again in a different context, in more depth.