Berkeley Wellness: When Medical Symptoms Are Dismissed as "All in Your Head" (David Tuller interviews Maya Dusenbery)

Expert Q&A: When Medical Symptoms Are Dismissed as "All in Your Head"

The book reviews how ME/CFS (myalgic encephalopathy/chronic fatigue syndrome), fibromyalgia, many autoimmune diseases like multiple sclerosis, and other chronic illnesses are all part of the group you refer to as “the disorders formerly known as hysteria.” Can you elaborate?

There are a lot of diseases we recognize today that have been carved out of a wastebasket diagnostic category of illness that in past centuries was called hysteria and since then has gotten different euphemisms, like psychogenic, psychosomatic, or somatization disorders. ME/CFS is one of them—I think that is a pretty dark example of a condition that disproportionally affects women and is very much stereotyped as a women’s disease. That is in large part why, I would argue, it is understudied and belittled. Skeptics of the illness have often pointed to the fact that it mostly impacts women as a reason to believe that it’s psychosomatic.
That’s a common pattern.

 

The problem is we don’t have feedback systems in place that will actually let doctors know they made an error. So they assume they’ve gotten the diagnosis right unless they hear otherwise—and they usually don’t unless the patient themselves comes back to tell them they were wrong. In other words, they overestimate their batting average, and they also continue to hold the same stereotypes they had about her: that she was yet another woman complaining of “medically unexplained symptoms.” And that affects how they perceive the next woman who comes to them reporting similar symptoms.

This is such a good point. It's so strange that doctors don't receive any reports about how it went with their patients. What a missed opportunity to learn and develop!

 

Patients sometimes run from such doctors. If they see them again they may not raise the issue.

 

Yes. The tacit assumption that no news is good news, is a prime example of expectation(?) bias, probably to a very high degree. That bias will likely be higher for the sort of conditions it is most important to have unbiased feedback for.

Yes again. A doctor will be even more biased about such tacit feedback, with the patient in front of them not up to making waves.

 

Well as a non woman...I can say that I have been treated no different.....with disdain and disbelief.

There’s equality for you.

I’m not convinced by the feminist argument ....yes there may be an element of this as there is in all walks of life (and it’s not right) but it’s not the main reason doctors treat patients who are difficult to treat this way.

It’s more complex than this and a large part is based on inherent stigma and bias within neurological conditions and other invisible illnesses. Doctors are human beings after all and subject to the same biases. They also have an inherent detached superiority in a lot of cases. They treat male patients the same believe me. I think harking back centuries before women (or working men) even had the vote is not only contrived but unhelpful...it only serves to dilute and distract from the main argument that people (of both genders) are sick and need to be given a fair deal.

ME is not a women’s disease ...this affects both genders ...and if we are being scientific the 70% prevalence in women (MUS not ME) isn’t that conclusive to draw such theories and to infer this repeatedly as this author does.

There’s so many examples of conditions where the prevalence is not gender biased yet patients still get treated this way?. I think this is rather selective cherry picking imho.

Epilepsy for instance which scores high on stigma has no gender bias in terms of prevalence ...but the quality of research and treatment of these patients leaves a lot to be desired
Parkinson’s occurs more in men than women
amyotrophic lateral sclerosis (ALS) also more common in men
Inflammatory bowel disease affects men and women equally

Just saying it’s easy to get a bit swept away with the wrong sort of unfairness ....I know I’m in the minority btw.

For the record I am pro gender equality, respect women, have an equal stakes partnership with an actual woman where up until I was sick I did most of the cleaning, half the cooking and laundry and looked after our son when he was a baby while my wife went to work. It pains me greatly that my gender equality-out-look indoctrinated by my bra-burning mother is now all for nothing now that Mrs Sloth has to do everything.

 

I agree with you on the cherry picking but I think the feminist angle is more for the publishing and sales eg their is a bigger market for books with feminist issues in the title than their is for medicine practised by overconfident uninformed or downright ignorant medical professionals .

 

That’s an interesting perspective @arewenearlythereyet , thank you for sharing your side of the story. i know some men with ME who have been treated very bad by health care professonals, so I agree with you that men may not be treated better than women, especially when it comes to this illness.

i would really like to see studies on doctors attitudes towards ME and FM, both towards patients of each gender. This may already exist, I don’t know. We know that medical students react differently whether they learn about ‘chronic fatigue syndrome’ vs ‘myalgic encephalomyelitis’ terminology.

Recently I saw my dermatologist, a man, and we were discussing medicine and funding for certain disease. He was expressing frustration that within cancer, breast and ovarian cancers were getting most of the attention as opposed to other cancers that were just as deadly, if not more. (Dermatology is under-funded in my area). It may be about perceptions but it is more complicated than that.

 

I agree with you, I’ve never seen a convincing argument for gender biases being an issue with ME/CFS.

 

I think there is a gender bias in a lot of this research, but its often not derived from gender differences or perceptions. I think its derived from a different gender bias, in that quite often men influence decisions more due to positions of power, or have more advocacy clout for the same reason. Its why male pattern baldness gets more funding than ME, its not because its gender biased in the sense of prejudice, its because there is a market and men are driving it, and a lot of rich men go bald. This impact can be seen in the way breast cancer has become more prioritised, and its not a bad thing. The more everyone gets involved in setting priorities the more everyone has a say in advancing causes. As we address general gender bias in society I think these secondary biases will improve.

In other words by fixing general gender bias we can improve many other aspects of society.

Another bias used to be in play that males were preferred in research as mixing sexes might confuse results, and sticking to one sex meant decreasing costs. This also meant biased research outcomes, in that we cannot be sure they apply to the opposite sex. Males were massively over-represented when this was going on. I think researchers are more aware of these particular issues now.

I do think however that the stories used to justify a lot of psychobabble play on biases against women. This is founded in old attitudes toward hysteria. At one point women got hysteria, men got something else, neurasthenia.

 

For me, the obvious gendered angle comes from the way I get treated in consultations. I can't imagine many guys have to sit in consultations where you literally get told by a consultant that "these symptoms are common in women because women are just emotional and anxious.".

I know other women who were told they should just "try for a baby" as if a severely debilitated person's life is going to be improved by bringing in another dependent life or that perhaps "things aren't working out with their husband" as if women's symptoms just arise from some invented social circumstance based on some stereotype a doctor has of what women are bothered about. I have a relative told she shouldn't be upset about her symptoms as "what does an attractive young lady have to feel upset about", in other words, if the doctor finds you sexually appealing then they can't see a reason for you to complain of symptoms - it's that blatant - and the poor woman nearly ended up dying from her undiagnosed autoimmune disease.

Also is it just a coincidence that the conditions that remain classified as "psychosomatic" by doctors are those that largely affect women? The only comparable condition I can think of is Gulf War Syndrome for men - but avoiding research in that area may have political reasons as governments don't want to be held responsible.

The conditions you mentioned above like IBD and Parkinsons are all well accepted and have validated treatments. The relatives and friends I know with IBD, Parkinsons and Epilepsy all have access multiple treatment options and specialist consultations and biomedical research that we could only dream of.

To provide another example relating to "hidden disease" - two of my endocrine diseases have different gender splits and the patient groups get treated very differently:

T1 Diabetes has an even gendered split - doctors provide multiple treatment options, work to involve and empower patients, listen to patient feedback about what does and doesn't work and tailor treatment accordingly, conduct multi-million £/$ research studies and most importantly are both actively searching for cures and to make treatments more and more physiologically similar to what our own bodies produce.

Contrast with hypothyroidism - predominantly women patients. No treatment options provided at all, doctors are dismissive and patronising in their publications, conferences and press releases - patient feedback is most certainly not welcome, little research done, new treatments are not explored, no attempt to accept that the treatment supplied is not a physiological replacement and instead is declared "the gold standard" and no interest in trying to find a more physiological replacement yet alone seek a cure. Patients (largely women) who complain are treated as though they are mentally ill or stupid old hags - a sanitised version of which even gets written into the official guidelines. Patients are forced to petition parliament to ask MPs to force doctors to take their concerns seriously - remind anyone of any other diseases?

 

I cannot imagine a severe ME patient fixing things by having a baby, I cannot even keep a cactus alive. I struggle too much with just caring for myself. This would be a recipe for child abuse, but also parent abuse, though occasionally pregnant women show improved health for a while.

I wont even own a pet because it would be abuse to the pet.

 

I'll just add a little bit to the criticisms here:

To put it simply the 'ideological' problem we have regarding ME/CFS is that within medicine the 'MUS = psychogenic/psychoperpetuated' brand of BPS holds institutional power and scientific acceptance. In other words, people actually believe that things like somatoform disorder, conversion disorder, bodily distress disorder, etc. are well-substantiated categories based on strong scientific evidence - or at least are willing to accept them - and apply them to patients who they can't figure out, regardless of sex.

Sexism is a fundamental part of the history of these categories - they are euphemisms for hysteria. But now sexism is not the issue here because the categories have mutated to become more or less equal opportunity stupid, as @arewenearlythereyet attests to and I can affirm.

Certainly women with ME/CFS can experience sexist encounters that pile on to problems of getting good care but that's a different issue.

I'd like to see this line of thinking disappear or at least never gain any traction. If it became a driving force for advocacy I fear it would distract from, or even subsume, needed efforts to push back on bad BPS 'science' and support good science by substituting cavalier political accusations of sexism for reasonable arguments.

 

And, alternative doctors who say they have cured people with whatever, including ME, don't see the people who give up on their sometimes expensive, and often ineffective treatments, and leave the practice. These doctors assume the person recovered, and they count that as a success. Then when the next patient comes in with the same illness, or symptoms, the doctor assumes they can "cure" them too, and tells the patient that. If this patient doesn't get better, like they are told they will, they may blame themselves, and the doctor may also blame the patient. It's probably rare the doctor blames him or herself for this failure.

 

Some doctors encourage women with ME to "get pregnant early", because they have seen (but have no evidence for) that sometimes getting pregnant during the active phase (first 4 years) can make them better. Which could be true (I can think of so many other possible explanations), who would know when no studies have been done, but it's just so extremely irresponsible.

 

I understand what you are saying but this is not my experience. I think it’s always easy to look down the lens of general unfairness and apply biases that already exist. Patronising, condescending doctors don’t just reserve this attitude to women, they just change the subject of it ..instead of suggesting having a baby they say take up a hobby or do a sport, perhaps do some gentle gardening ...or ‘more tests” do you want me to refer you back to the CFS clinic to have another course of GET? I hate sport...fuck off is what I’m thinking...I just want tests/treatment). This narrow minded condescension is rife in medicine and it’s not just reserved for women. Although the type you describe (which is disgusting) is probably not reserved just for ME it’s probably blanket for all diseases with treatments or not. That doesn’t make lack of research for ME a gender issue.

I can also say that for the conditions I mentioned, these do not always have great access to services and appropriate care. Having had one of these conditions since a child I would more describe the “treatment” as stabbing in the dark due to lack of decent scientific research. And the stigma from these is far worse than I’ve ever experienced from anything else (segregated in class as a child...put in with the coats and shoes because the teacher “didn’t teach my sort” doctors drugging you up to the eyeballs because they didn’t know what they were doing, having to see a psychiatrist when my condition has nothing to do with mental illness etc etc).

The quality of doctors in this field is quite appalling and the treatments do not cure or really give you a better quality of life. To say that there is good medical care for some of these conditions is not correct and that’s because there are not adequate treatments or cures because of lack of research and good doctoring. This is strange that this isn't the case for other diseases that you can see and understand easier (cancer for example) they tend to have a better quality of doctor treating and studying them. Your example of hypothyroidism is also not my experience ..since my wife has this and she got excellent medical care ...this is because there is a valid treatment that works much better than applying lifestyle restrictions which often is the only course for some of the ones I mentioned. I often compare this since me getting ME followed quite closely after her successful treatment for her hypothyroidism.

However I could have cherry picked and taken

Rheumatoid arthritis
Pernicious anaemia

These have a higher prevalence in women than men but do they have treatments? Yes. Do we understand more about these than ME? Yes. Is this anything to do with gender issues? Not really. Are women and men treated the same by doctors for these disease. Yes. I’m not saying they are treated well without being patronised by doctors. It’s just they clearly have had some research put into them to create the treatments despite them being so called ‘women's diseases”

These are mentioned in the same breath as ME often by advocates as if to justify the lack of research and treatment for “women’s diseases”. I just don’t think this is a particularly strong argument: or logical: or a true reflection of the injustice that faces both genders. I also think the hysterical women and ulcer/h pylori thing gets a bit confused sometimes since this isn’t gender related.

The issue is invisible neurological conditions that have poor understanding by doctors and the general public tend to be kicked into the long grass by the medical establishment where they are left to pootle along with no real interest or push for a greater understanding, just a load of blunt tools and behaviour change modelling. This has nothing to do with gender or prevalence from what I can see. So it must be something other than gender.

 

It's definitely more complex than being 'just' an issue of sexism (as if that wasn't bad enough), but that doesn't mean sexism isn't a part of it. I would argue that the problem is multifactorial (but not in the way the BPSers think!).

Hysteria and related concepts are inherently sexist, and I don't think we can easily deny that that influence still exerts an effect on diagnoses like ours. Sexism creates the language with which people frame our illness, even if that language is also directed at men. So while it appears we get a pretty equal treatment, that's only because the sexism now applies to everyone.

But that language is also classist and ableist, such as talk of 'strivers versus skivers', which paints many people with chronic and invisible illnesses as layabouts, scroungers, attention-seekers, etc. There are narratives about the 'deserving' and 'undeserving' poor: those of us who don't show easily categorised, objective illness are probably considered 'undeserving' by others (e.g., by a minority of medical staff who think we're wasting time and resources, by DWP staff and their contractors who think we don't deserve benefits, or by Daily Mail readers who think we're 'trying it on').

Then there's the idea of 'yuppie flu' striking down those who deign to do well. The term 'yuppie', in applying to the young, is rather like the disdain some publications have for students now. It's young people trying to better themselves that they don't seem to like, or young people who threaten the status quo with their 'soft' ideas such as staying in the EU or asking that their uni fees aren't used to pay people who speak hate.

Presumably, the problem with yuppies is that we're too ambitious and yet too soft to handle the pressure of that ambition, or that our ambition is somehow a kind of class treachery where we're trying to be 'above our station'. We don't know our place in society, ergo we're at fault for our illness.

ETA: Yes, some of these intersections actually contradict each other--but prejudice isn't usually rational!

I think in terms of day-to-day experiences, most of us will get pretty poor treatment. But I also think things like women having to have men present at consultations, in some circumstances, does highlight that everyday sexism worsens that experience in addition to the crappy treatment everyone gets.

Other things will increase the barriers to good healthcare too. For instance, I know a trans woman who was told her ME was 'merely' a manifestation of her 'gender dysphoria' and internalised hatred of her own body (I kid you not). That kind of attitude can make getting care harder, too. Another example might be the 'aggressive' black woman who gets labelled with borderline personality disorder for 'attention-seeking' behaviour (this happened to my friend, who was convinced she had ME and was merely pursuing specialist input to rule it out). She doesn't press things any more because black people are more likely to be sectioned and she's heard the horror stories.

As a man (a mixed race, gay man, mind you, but still a man), I think I've mostly had neutral to positive experiences (not always, though). The only person who really wound me up at the time was a doctor at the local CFS clinic. My GPs have been very supportive and helpful (though I usually book appointments with women for a reason).

I think we can't really talk about hysteria without talking about sexism. But I also think sexism against women impacts upon men too. Pragmatically, I also think the feminist focus sells more books. But I don't think it's a misrepresentation either. You could include racism, classism and ableism in that discussion too, mind you.

Now could a book about how ME affects men also sell well? Probably, and it would be an interesting read. I think part of the negative experience men with this illness have is that they're experiencing the sexism women face everyday, which they're not used to, and this heightens their distress at receiving crappy treatment. There are implications that we're 'less than men' or should 'toughen up', but those are pretty gendered concepts. It's all bundled up with the gender expectations of masculinity, too. This is why everyday sexism and gender stereotyping harms men too, even if it's usually overtly directed at women, because the assumption that 'feminine' = 'weak' cuts both ways so that 'weak' men are 'feminine' and therefore inferior. Note that early researchers on hysteria (and related concepts) in men noted that it affected husbands who were 'passive' to their wives.

tl;dr: I think you can argue that multiple forms of discrimination can be at play in both our medical encounters and the stigma we experience more widely. Focussing on one doesn't necessarily mean those other factors aren't also at play, though perhaps some factors get more airtime than others.

 

Are there any figures on what percentage of people are sent for treatment (ie cbt as part of IAPT) as MUS patients are female?

"One of the factors that has attracted a great deal of attention in developing our understanding of MUS is the role of gender. Johnson (2008 Johnson, S. K. (2008). Medically unexplained illness: Gender and biopsychosocial applications. Washington, DC: American Psychological Association.[Crossref], [Google Scholar]) suggests that women’s symptoms are more likely to be multidetermined than men’s symptoms, and because the most-established finding regarding MUS is that they are multidetermined, it is not surprising that MUS are more prevalent in women."

"Greer and colleagues reported that primary care physicians were more likely to believe that the presenting symptoms had psychological explanations in female patients than male patients (Greer, Halgin, & Harvey, 2004 Greer, J., Halgin, R., & Harvey, E. (2004). Global versus specific symptom attributions: Predicting the recognition and treatment of psychological distress in primary care. Journal of Psychosomatic Research, 57, 521–527.10.1016/j.jpsychores.2004.02.020[Crossref], [PubMed], [Web of Science ®], [Google Scholar]). This may lead to women wrongly receiving too many functional labels."

quotes from:
Psychology of medically unexplained symptoms: A practical review 2015
https://www.tandfonline.com/doi/full/10.1080/23311908.2015.1033876

 

I think @adambeyoncelowe has explained how people face multiple forms of discrimination best, but I guess all I’d say is that when someone writes an article about how poorly women are treated, it is NOT invalidating your experience as a male pwme and saying you have an easy ride or do not face your own discrimination.

It’s just saying that women, generally speaking, are subject to more of it. That discrimination is multiplied if women are non-white, poor, etc.