The sexist reality of being a woman with ME

[SilverbladeTE]

Up until the spread/use of MRI and advanced X-ray scanners in the 1980s, women in the UK who had Multiple Sclerosis were often classed as "hysterics", many were cajoled or forced to take psychiatrics drugs which had harmful, even lethal effects on them
some women were forcibly incarcerated in asylums because of this
And the medical profession GOT AWAY WITH THIS EVIL, as the "professional classes" almost always do

Women do have very different health risks/issues than men, not surprising, but has nothing to do with them being "weak"
women have more powerful immune systems than men, not weaker!
but that innately increases risks of autoimmune problems, especially when coupled with fact that women's health varies greatly due to the greater load their lunar/hormonal/reproductive cycles forces on them.
whether we all like it or not, we ARE affected by our hormones/genetic bent. Doesn't make male or female "less", just a tendency towards certain benefits, deficits or problems is all.
As said, the real problem in this case is way some scum or just plain lazy/wilfully stupid behave towards women because feminine is looked on as "weak easy victim" by ratbags

Women in my family were every bit as intelligent, smart, strong willed as the men.
Some people, like, moi, don't' understand it when some women DO follow their damned repressive gender stereotype same with men! nothing wrong with a woman Being all "soft girly and feminine" if that's her way, problem is way society slams folk into boxes

the idea that men are "cold logical" and women are "wild and hysteric" is *tripe!*
jeesh us guys are every bit as hormone, ego and impulse driven as women, look at history lol
it's just lies to excuse the arrogance and stupidity of those who crave power over others
rather see an ordinary housewife as national leader than the crooks loons and incompetents we've had for decades cause she would be far more likely to grasp the reality of things


another issue is since women are much more socially capable than men and have less ego issue sin certain things like health (as general issue), they are more likely to seek help for such medical complaints as M.E.
I suspect in future M.E. and related illnesses will be seen as having large hand in male suicide rates: losing our physical strength/constitution/ability is usually catastrophic for our mental outlook
frankly I see my entire productive and hopeful life AT AN END now, maybe in summer I can write a bit again, but that's it. Lost everything I care to do bar very sedentary things. Not a happy bunny
not that'd I'd expect a woman to be happy either, hell no!

 

[Snowdrop]

I'm sorry but whoever said blanketedly that men are receiving only top notch care, compared to women, in my case was simply not true. I've never seen any sexism around this disease. I think this whole thing is a distraction.

Nobody has said that. Not the author or posters above.

Any benefit that accrues from an article bringing attention to the abuse and neglect of patients (even if gender focused) accruses to all patients in the end.

In the article the author makes a point with regards to male impotence and PMS. The statistics if correct make a point that women's health issues are not as important. This is a general issue. It is not related to whether men get primo treatment for ME and women don't--that was not the issue.

 

[Snowdrop]

Maybe, but I am not really sure. I suspect the most potent motivation for cr*p research was the DWP's disinclination to pay social benefits to ME sufferers wherever possible. On that basis I doubt a different gender distribution would have changed things much.

A good point. The political motives behind health care are bent on the disenfranchisement of everyone but the elite.

 

[Snowdrop]

The division in this thread demonstrates exactly why bringing sexism into this is a bad idea.

Take a look around. There are differences in opinion throughout threads here on PR and everywhere else. Hardly a reason why not to bring up the issue. It's just one article. Aimed at an audience geared to reading that site. It creates exposure and made some points that counter some of the bullshit tripe that comes out of the BPS sanctioned media. I wouldn't give it too much credit or underplay what good points it brings out.

 

[eljefe19]

Nobody has said that. Not the author or posters above.

Any benefit that accrues from an article bringing attention to the abuse and neglect of patients (even if gender focused) accruses to all patients in the end.

In the article the author makes a point with regards to male impotence and PMS. The statistics if correct make a point that women's health issues are not as important. This is a general issue. It is not related to whether men get primo treatment for ME and women don't--that was not the issue.

Someone LITERALLY said that above. Jesus who cares whether you were treated badly because of sexism or because of the anti ME bias that we ALL experience?

 

[Dolphin]

2. One of the reasons ME is understudied is that women mostly get it. It's easy for doctors (most of whom are male) to not be too fascinated by it.
3. If ME was a majority male disease, I suspect doctors would have gravitated towards trying to solve it earlier.

A study that found the attitudes of male doctors were better than female doctors towards the condition.

Fam Pract. 2005 Aug;22(4):389-93. Epub 2005 Apr 1.
Chronic Fatigue Syndrome: a survey of GPs' attitudes and knowledge.
Bowen J1, Pheby D, Charlett A, McNulty C.
Author information

Abstract
BACKGROUND:
GPs need evidence and guidance to help them diagnose and manage Chronic Fatigue Syndrome (CFS)/ME appropriately.

OBJECTIVES:
The aim of this survey was to obtain baseline data and identify the factors associated with GPs' attitudes to and knowledge of CFS/ME. The attitude of GPs to the condition is an important indicator of likely prognosis.

METHODS:
A postal questionnaire was sent to 1054 GPs served by Taunton, Bristol and Gloucester laboratories. GPs' attitudes to nine statements about CFS/ME were assessed and the factors associated with positive or negative responses were determined. Knowledge of the clinical features was also assessed.

RESULTS:
811 GPs (77%) returned the questionnaire. 48% of GPs did not feel confident with making a diagnosis of CFS/ME and 41% did not feel confident in treatment. 72% of GPs accepted CFS/ME as a recognisable clinical entity and those GPs had significantly more positive attitudes. Three other key factors that were significantly, positively associated with GPs' attitudes were knowing someone socially with CFS/ME, being male and seeing more patients with the condition in the last year.

CONCLUSION:
Despite the publication of guidance for GPs on CFS/ME, confidence with making a diagnosis and management was found to be low. Educational initiatives and guidance for GPs should stress the importance of accepting CFS/ME as a recognisable clinical entity, as this is linked to having a positive attitude and could lead to improved confidence to make a diagnosis and treat CFS/ME patients.

PMID:

15805128

DOI:

10.1093/fampra/cmi019

 

[Snow Leopard]

A study that found the attitudes of male doctors were better than female doctors towards the condition.

So what? The gender of the doctor doesn't overcome the biases inherent in the system.

Just being with a dr. at an appt. is biased. I've seen the way dr.'s talk to my husband versus the way they talk to me. And I don't think it's just the male dr.'s either. I don't know, maybe it's the white coat?

Yes, the sexism is inherent in the system and female doctors are taught to practise the same assumptions (that women's health problems more likely to be dismissed as due to "stress", insignificant and transient).

I've known of women who have nearly died due to issues being dismissed as "stress", "period pain" and denied serious investigation only to have severe consequences just a few weeks later. (yes, even by doctors who were women)

 

[Cheesus]

Not sure that is true ... I think female psychos may just be cleverer at concealment.

I looked this up out of interest. Here is what I found:

Some studies have examined the prevalence of psychopathy in women.23,41,42,46,47 With few exceptions,23 studies have shown that there are more male psychopaths than female

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3379858/

 

[Cheesus]

I think @Murph essentially nailed it with his response. Those are pretty much exactly my views on the topic.

 

[Valentijn]

Meanwhile all the men with the same condition are receiving first class medical attention.

By having a "women's" disease, men are being viewed with the same contempt. As far as many doctors are concerned, you may as well have sprouted ovaries and developed a nice case of female hysteria.

However I think they kind of are making that argument. The title itself inherently suggests that there is a distinction between being a woman with ME and being a man with ME, and that when you are a woman with ME you are the victim of sexism.

I like the title in the URL better, where it's merely about feminism (gender equality) rather than "sux being a woman with ME". Because I do think that title does overlook that it sucks just as much for men, if not more, due to the emasculation coupled with the same attitude of dismissal. But editors are usually writing or changing the titles to add sensationalism (click-bait), not the author. Hence I would never judge an article by it's title, or even pay much attention to the title, even if it is annoying.

The one time where the man-card might help is during the diagnostic period, when there's a stronger inclination to assume the female is hysterical, and fewer alternative diagnoses are considered. But after that, I don't think anyone thinks guys with ME get an easier ride from the medical system.

Maybe, but I am not really sure. I suspect the most potent motivation for cr*p research was the DWP's disinclination to pay social benefits to ME sufferers wherever possible. On that basis I doubt a different gender distribution would have changed things much.

The gender distribution is used to feed into the "not real" claims, which are often trotted out in BPS research when they claim that most cases of imagining symptoms occur in women. It also feeds into society's (old-fashioned) views of how financially valuable someone is. A sick woman or child can be supported by her hard-working husband or father. A sick man means no income for the family, a need to be supported by social benefits, etc. It's inappropriate and inaccurate, but it's ingrained into society to see the man as the bread-winner and the woman as being less essential. This situation might improve as the younger generations take over.

The division in this thread demonstrates exactly why bringing sexism into this is a bad idea.

I don't think it's creating strong division, just thoughtful discussion. It's good to think about things which are controversial, especially since we can be very civil about it. I can appreciate both sides, and I do see how a feminist angle can be harmful when done without sufficient nuance and explanation.

But the feminist angle can also attract a wider base of support. It's similar to tying the poor CFS research standards of a few academics into the much larger open data movement. Things exploded as a result, and we started getting serious support from respected academics around the world who have no background with ME. And isolating ourselves from movements which can greatly benefit us doesn't make much sense, even if we aren't 100% in agreement with everything those movements stand for.

Someone LITERALLY said that above. Jesus who cares whether you were treated badly because of sexism or because of the anti ME bias that we ALL experience?

No, someone sarcastically said that above. That has already been explained. And it makes a difference if sexism is a cause for the ME bias, because addressing it might remove some of the ME bias. And even if it's not the cause, an accusation of sexism could still provide incentive for doctors and politicians to change their behavior toward ME to reduce the appearance of sexism.

 

[trishrhymes]

Someone LITERALLY said that above. Jesus who cares whether you were treated badly because of sexism or because of the anti ME bias that we ALL experience?

I think that was intended as a joke / sarcasm. I didn't take it literally.

 

[trishrhymes]

I think it has been said there is very little funding or attention given to ME research in the USA because it was classified as a women's illness by the NIH. Have I got that right?

 

[Woolie]

Not sure that is true ... I think female psychos may just be cleverer at concealment.

This has got nothing to do with anything, but its interesting to reflect on why the same kinds of problematic behaviours receive different diagnoses depending upon whether they're observed in men or women. For example, that nurse - whose name I can't recall - who killed a lot of her pediatric patients got branded as having Muchhausen's by proxy. The same behaviour in a man would be considered to be psychopathy.

These terms reflect our cultural expectations of men and women, and our beliefs about what motivates them.

Another interesting gender aspect of MECFS is the way psychosocial advocates casually drop the male-female gender ratio into articles on MECFS, they just put it out there with the hanging implication that this supports a psychological account (they never say that out loud, they're cleverer than that). Because we believe even in this day and age that women have more "psychological" problems than men. Even though so many behaviours often associated with psychological dysfunction or maladaptive coping are more prevalent in men than women e.g. substance abuse, suicide, crime and domestic violence.

 

[Valentijn]

I think it has been said there is very little funding or attention given to ME research in the USA because it was classified as a women's illness by the NIH. Have I got that right?

Yes, it's in the "Office of Research on Women's Health" (ORWH) at the NIH, and thus far they refuse to move it to a biomedical institute. ORWH manages social research for issues involving gender, race, and poverty, from what I recall. They aren't involved with any biomedical issues or research, except CFS.

Based on the emails released by a FOIA court case, the women working there are a bunch of nasty idiots. Basically it seems to be where the mean-girls from high school end up.

 

[Cheesus]

@Valentijn

I agree, the title in the URL is much better. The title it has now is deliberately provocative and click-baity, and does not really reflect the content of the article.

 

[Cheesus]

This has got nothing to do with anything, but its interesting to reflect on why the same kinds of problematic behaviours receive different diagnoses depending upon whether they're observed in men or women. For example, that nurse - whose name I can't recall - who killed a lot of her pediatric patients got branded as having Muchhausen's by proxy. The same behaviour in a man would be considered to be psychopathy.

These terms reflect our cultural expectations of men and women, and our beliefs about what motivates them.

That is interesting. A subjective diagnosis will reflect any gender biases held by the diagnostician.

 

[Barry53]

Even though so many behaviours often associated with psychological dysfunction or maladaptive coping are more prevalent in men than women e.g. substance abuse, suicide, crime and domestic violence.

Yes, but domestic violence comes in many different shades, including the subtly psychological as well as the more obvious physical abuse. The latter is far more likely to get recorded into official figures, and is much more likely to perpetrated by men. But the former is perpetrated by both men and women.

 

[Kalliope]

I remember Dr. Nigel Speight mentioning in a lecture on ME and children that some (male) doctors could be absolutely fine when it came to girls with ME - being weak, and sensitive for impressions, needing to rest etc etc, but they got completely furious towards boys having the same disease and symptoms.

Discussing sexism, expectations towards gender roles (wether they are conscious or not), how people are treated differently based on bias, will ultimately be beneficial to all of us.

 

[reader62]

I look at it like this. The FACT is that both men and women suffer from ME. They suffer the same: this disease doesn't discriminate. We know this, because we are in the trenches fighting together.

However, the PERCEPTION is that it's a women's disease. The popular image of ME is that of a young woman languishing photogenically in a bed, which in the popular imagination links it to the long history of women, physical frailty and hysteria. Such women were not taken seriously, as their condition stemmed from their biologically-ordained frailty (the Ancient Greeks believed that 'hysteria' was cased by the womb wandering about the body, hence the name).

I suspect - correct me if I'm wrong - that male ME sufferers may have a harder time getting diagnosed than women, because at least we fit the stereotype. A man with ME has to accept 'feminine' passivity and weakness, and that must be doubly difficult.

However, funding for ME research has been sparse precisely because it's been linked to mental illness - the belief that it's 'all in the mind'. If we little ladies could just pull ourselves together, we could stop being a drain on medical services. The fact that the disease hasn't been taken seriously, I believe, is because it plays into the hysteria narrative.

I'm not sure if this all makes sense, and forgive me if it sounds too pompous. In my healthy life I'm a university lecturer specialising in gender, so old academic habits die hard!

 

[Cheesus]

Such women were not taken seriously, as their condition stemmed from their biologically-ordained frailty (the Ancient Greeks believed that 'hysteria' was cased by the womb wandering about the body, hence the name).

Indeed the Royal Free outbreak in 1955 was attributed (20 years later) directly to "mass hysteria", and that attribution arguably underpins much of the subsequent marginalisation of ME sufferers. So we have direct evidence of a link between medical prejudice towards women and the origins of our current dilemma.