How sexism gave men a "woman's disease"

There is a slogan that pops up in feminist discourse from time to time: sexism hurts men too. And while I don’t know that it’s an argument most men find so persuasive they then choose to abandon the patriarchy, I couldn’t help but think of the refrain while reading the discussion in the comments section to this post by Cort Johnson. In the post, Johnson details the connection between disorders predominately/exclusively affecting women and the remarkable chance it’s a disorder at the bottom of the NIH research funding barrel -- ME/CFS included. A number of men took offense at Johnson labeling their illness a "woman's disease."

Do you realize how demeaning that label is for a male CFS sufferer? People generally operate from their own areas of interest, and don't consider their impact on other people- but frankly, I'd personally rather be thought of as crazy- then as having a women's disease. And it's not because I'm sexist. It's because the label is emasculating.
Now this obvious though likely unintended sexist sentiment aside (i.e. even being crazy is preferable to being a woman!), I do have a great deal of sympathy for the male readers who feel dickless with the label. Frankly, we women aren't too keen on the “woman’s disease” label either, which for a woman (perhaps breast cancer, notwithstanding)* is also like having someone remove the organ that defines us -- in our case, the head on our shoulders rather than the one men carry in their trousers. It’s not just being deemed “crazy” that’s the problem for women. It’s that having a "woman's disease" generally implies we don't have the intellectual capacity to understand something as complex as our own bodies. That only men get to say when something is really wrong and until they do, we're supposed to shut up and let them get on with real medicine.

So when it became clear that the majority of the people with a mysterious, debilitating disorder were women, it was men at the NIH and the CDC who wanted nothing to do with the disease that was so obviously nothing, leaving it to a handful of bureaucrats to research either because they were determined to prove it was a form of psychopathology (Straus, Reeves) or because it was their misfortune to be stuck with the job in order to placate Congress (Heineine, Mahy). It was men who labeled the disease “hysteria” (from the Greek word hystera or “uterus”) -- a term the American Psychiatric Association considered to be so sexist they had dropped it as a psychiatric diagnosis (or rather, renamed it “somatoform disorder”). It was men who described the condition they decided to call “Chronic Fatigue Syndrome” to other men with slides of Victorian women, hand to forehead, fainting. It was men at the NIH who moved the disease to the “Office of Research on Women’s Health,” which they knew to be a purgatory of chronic underfunding and dubious science. Sure there have been a couple of women involved here and there (oppressors always have their collaborators from among the oppressed). But it has overwhelmingly been as testosterone-driven a good old boys club as it gets.

If women had been equal members of the process, it would never have been called a “woman’s disease” because “woman’s disease” has too often meant “hysteria,” which in turn has historically been man talk for women being "difficult.” It is not we women who have cut your dicks off, gentlemen, by pointing out how those with a "woman's disease" are treated. You can thank your fellow blokes for taking it, along with your other head. We women had our heads taken by the medical establishment a long time ago.

Sexism, as they say, hurts men too. And the 30-40% of ME/CFS patients with a penis rotting away in beds all over the world right now have the grave misfortune of appreciating that this isn’t just a feminist proverb; it’s an all too painful reality.

(Originally posted at Behind the Surface)

__________________________________
*While doctors take cancer seriously, the contemporary phenomenon that breast cancer has become is a uniquely peculiar combination of crass capitalism, titillation (what straight man prefers ovaries to boobies?), and reinforced gender roles. However, ask those same breast cancer patients how seriously doctors take them after the cancer is gone and they are left in a semi-ME/CFS-like state from chemotherapy.
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Comments

Powerful stuff Michelle and all too painfully true, whichever sex we happen to be.

I really think a strong unified message from men with ME to the NIH can shift this - however they want to send it. Imagine for eg if every male ME sufferer mailed the NIH to remind them that men get ME too, and is funding for ME research from the 'Womens' office' going to be denied them, because they are men? Visual images have a strong impact too - how about a nationwide campaign with photos of all the guys with ME out there and what job/professions it was they were doing before they got ill etc.

In addition to the other excellent campaigns currently running, the guys could get a really powerful momentum going here and maybe, for once and for all, we could tear ME funding off the subs bench and propel it into the giants' league, where it belongs.
 
Michelle, this is refreshing and fun. Thanks so much for a punchy analysis of how the creation of CFS/ME as a 'woman's disease' has led to its being relegated to the bottom shelf of funding. Could you consider publishing this in a mainstream mag? It's really well written, and would be of interest to general readers as well as people like myself. I particularly like the way you've pointed out that some 'women's illnesses' attract attention (ie. breast cancer).
 
As a male with CFS who is XMRV positive I have been very humbled to be treated with such prejudice. As a caucasion male who grew up outside of Boston ( The worst City in America to try and find a CFS Doctor) I never really experienced such prejudices first hand as I have since cobntracting CFS.

The pain the I live with daily requires narcotic medication as I have some normal chronic pain issues that just get completely amped up by CFS. In fact that was my first symptom. I can't imagine being a person of color and navigating the disbelieving Doctors who treated me me like a drug seeking malingerer.

I am hoping that my XMRV plus cerificate of immunity will keep me from being voted off the island now. John Lennon sang Yoko Ono's Anthem that Woman is the Ni**er of the world. A very powerful and true edict that I more fully comprehend having this illness.

Although maybe I may not be real proud to have a Woman's disease, I have learned a lot about the prejudice and suffering our Sisters, Mothers and other loved ons. I couldn't hope for better company. What is it about this disease that cuts at us from every direction. Goverment, society and the medical world. Researchers, journalists (Most not all!) and politicians.

Maybe after we get some of the research going we will all be able to vote.

I think we need free public service announements on TV and rdio with a quixotic character like Hugh Laurie saying I play a rude Doctor on TV (Dr. House) and this is one disease you don't want to mess with. He could play his electric guitar or some piano and make some pithy comments about the short end of the stick us PWC's are getting. So lighten up on anybody you know who has this. It's real, it sucks and trust me, you don't ever want to feel the way these people feel or be treated the way these people are treated.

I digress!

Proud to be a man with a woman's disease.










pictureofhealth;bt3401 said:
Powerful stuff Michelle and all too painfully true, whichever sex we happen to be.

I really think a strong unified message from men with ME to the NIH can shift this - however they want to send it. Imagine for eg if every male ME sufferer mailed the NIH to remind them that men get ME too, and is funding for ME research from the 'Womens' office' going to be denied them, because they are men? Visual images have a strong impact too - how about a nationwide campaign with photos of all the guys with ME out there and what job/professions it was they were doing before they got ill etc.

In addition to the other excellent campaigns currently running, the guys could get a really powerful momentum going here and maybe, for once and for all, we could tear ME funding off the subs bench and propel it into the giants' league, where it belongs.
 
Picture of Health: Yes, I think a publicity campaign using just men with ME/CFS would be great! Not to mention poor people or minorities - who everyone from Wessley to Jason agree are more likely to get ME/CFS - to help dispense with the "yuppie" image. As for a photo campaign, I'm trying out a photo-essay of sorts on Facebook where I post a pic of me each day (or more like each week-ish lol) to give an idea of what ME/CFS looks like on a daily basis.

Nermalina: Thank you for your kind words. If I had enough strength to write on a regular basis, I could do some freelancing and get connected enough to publish. Unfortunately, I've barely been able to journal the last several months (which is driving me effing crazy!). Though we have had some wonderful writers who have published about ME/CFS in mainstream publications: Floyd Skloot, Laura Hillenbrand, Phyllis Chisler, Dorothy Wall, Hillary Johnson. Unfortunately ME/CFS has proved to be far more complicated than just being an issue of publicity - not that more wouldn't help! If I get another good spell, I might write about that.

Xandoff: I'm so happy to hear you say that. I felt, perhaps mistakenly, that the male commenters of that post were trying to wiggle out of being subject to the sexism that has caused the situation we - men and women - are in just because they happen to have a dick. My feeling is that if men with ME/CFS don't like being treated the way women are treated by doctors because of their ME/CFS, they need to address the sexism that is causing that treatment rather than insist they should get a free pass out of it because they don't have a uterus. Now, I might have completely misread what they were trying to say between my own brain fog and their misspeaking because this damn disease makes articulation so difficult. And if I did misunderstand, I apologize. It can be a tricky tightrope between taking a stand when you feel something is wrong and cutting each other slack because we're sick and struggle to articulate our positions correctly.
 
Wonderful. Feminist philosophy.... It's nice to read some from another member. ME/CFS has been joined seamlessly to sexism, for me, since the beginning. I Think that ME/CFS is cutting edge for a shift in men's conscience about women. lol.

I am reminded often of a book, I think Virgina Wolf wrote it. It was about a woman who was locked in her room by her husband after some "outburst". Over the years she tore the wallpaper, in her room, in small long unending strips from one part of the room and finished after going completely around to the spot where she started. She tore the paper with her teeth. Around and around a...

That is what I feel like inside when I am talking to some arrogant male doc who sits silent, judgmental, and unwilling while I cry, ok kind'a hysterically, And I say I just want someone to have the curiosity to find out what is wrong with me. Neurologists, bah humbug. If I wasn't hysterical (which I wasn't) when all this started I sure am when, utterly exhausted, I cry and cry when I finally get to a doc there is the look. You know the one.

If I had the energy I'd take them on. I did get into a screaming match with a doc who runs a Medicaid factory.
I have to apologize to him, uck. But I am really not sorry at this moment.

I don't think of ME/CFS as a woman's disease. I just think it's a terrible one.

May we all be vindicated soon. And then, Suck on that Emory/CDC.

I want to encourage the many men who suffer with ME/CFS to raise up, as a group, and speak loud and clear. I don't want you to rescue me. I just know that they will listen to you, in a different way, then they have listened to me. That's a fact.


Blessings.
:sofa:

edit: tare for tore. And then back again.
 
I find below HIGHLY sexist. I am not happy with "I personally would rather be thought of as crazy then having a (lowly..my insert) woman's disease. Sheeze
This is what makes this disease so hard to deal with..
Same thing happened with HIV/AIDS...can't have a AIDs you must be GAY!! Oh My
This kind of thinking kept the patient population from accepting what Dr. Elaine DeFrietas said in Congress..."some doctors and researchers are calling this disease....non HIV AIDS...It is not about 'fatigue"
Meghan

"Do you realize how demeaning that label is for a male CFS sufferer? People generally operate from their own areas of interest, and don't consider their impact on other people- but frankly, I'd personally rather be thought of as crazy- then as having a women's disease. And it's not because I'm sexist. It's because the label is emasculating."
 
How sexism gave men a "woman's disease"

In my experience the fact that I am Male is of no consequence to the medical world. The atmosphere of ignorance and intolerance predicated from that great AUTHORITY the Centers for Disease Control have essentially made the 800 pound elephant in the room INVISABLE. My gender made not one whit of difference to every specialist and Doctor that I saw. This is global discrimination. Doctors were taught one thing about ME/CFS. There is no treatment, there is no cure and the definition of CFS is so corrupt it skews the entire landscape furthe

I feel like I am inthat fifties movie a young boy who see's a space craft land in the woods behind his house. He later finds the aliens who lived underground that put a probe in the neck of the Towns authority figures in the community to take over their minds. When the boy goes to tell his Father of the discovery, the boy is about to blurt out the truth when the Father turns his neck and the camera and the boy see the probe sticking out of his neck. The boy is screwed and he knows it. Even his protector is "ONE OF THEM". The movie ends with the boy waking up from a bad dream. We are not so fortunate.

Back to reality. The fact that women bear the brunt of this illness and that it is ignored by a Male Hierarchy called the CDC is a crime. It Is Sexism. Although any man who has this illness is under the same gun that women are. We are no better treated. The CDC has seen to this.

Even if the men with CFS were to raise up together and speak loud and clear I do not believe that we would be listened to based on my experience. Nobody is listening to me. In fact because they have made this a diagnosis by exlusion, we are further excluded from getting properly diagnosed because we don't fit the profile because we are men.

I think any concious efforts to consistently describe this disease to the public as inclusive of men and women would be a positive strategy. In other words lets make this a plain old disease and not make it a woman's disease anymore. Maybe this is a cop out but we have bigger fish to fry. I always thought the best name change would be to call this something something DISEASE. Even Chronic Fatigue Disease has some weight to it though it would not be my first pick.

Michelle I was inspired by your article How sexism gave men a "woman's disease" . It is a valdid arguement. Perhaps the past way to evolve here would be to take this tool away from "THEM" and just make it a equal opportunity disease. Let's let the public know that this disease waits for no one and that they could be next. The best revenge is to defeat all of the predjudice that surrounds this disease.

I know my thoughts are all over the road here, the brain fog is clinging to the landscape this morning. My point is that it might be more practical to just turn the tables on them. Maybe when we solve this thing an autopsy can be performed and the body exhumed. The fact that SEXISM played a hand in holding back the research and a cure will be an important footnote in history to point to if a situation like this ever arises again. I hope I have not offended anyone. Just my humble opine, muddled as it is.

Stiil Proud to Have a Woman's disease
 
There are diseases that are as bad or worse than CFS, but none is treated with less dignitity. Has sexism played a role? Yes. I've got a lot bigger problems than trying to protect my masculinity--in this context, a "woman's disease" and "crazy" are both meant to mean the same demeaning thing (its all in your head or wacky hormones), I think--not as in breast cancer. BTW, I'm male.
 
I am also a guy with CFS. My view on this is slightly broader. Historically those in power, or who want power, find ways to put others down, deny them power, and is more about political spin than anything else. A group identifies with its own members by recognizing language, culture, race, sex, or education as a criteria, just to name a few. Sexism is just another -ism in this sense. So I agree with what you say, but it is bigger and broader than being just based on sex.

Yesterday I had my twice a year medical visit. The doctor wanted to run some blood tests, so I suggested he include white blood cell count etc. due to the high prevalence of leukemia and lymphoma in CFS. He became angry. He became even more angry when I asked questions about the timing of the tests, since I have severe circadian disruption - "morning" is meaningless to me. This was about him maintaining dominance (authority), and I got the impression that he thought I was just another crazy patient. I think his medical knowledge on CFS is still stuck in the mid-80s at best.

By the way, the only thing I use this doctor for is scripts. He is too ignorant of my condition for me to consider anything else.

So my suggestion is that this is more about power than sexism - sexism is just another way to put people down. Moreover, those who want to maintain power can then start spinning this as just another crazy feminist ploy. Facts never enter into it for them, and it doesn't matter how smart they are either.

So we get labelled as crazy women, or feminine guys, or malingerers or just plain crazy. Anything to put us in our place.

Bye
Alex (Individualist)
 
Michelle, this is a great analysis, thanks! There are always a lot of layers to "unpack" when talking about sexism.

Everything we do, including medical research, is naturally going to be influenced by society's views of women. It reminds me a joke, "The patriarchy - You're soaking in it!" (from that old Palmolive commercial, hat tip to Shakesville, see http://shakespearessister.blogspot.com/2008/09/youre-soaking-in-it.html ) I think it can be hard for men to understand the concept of male privilege and the history behind the diagnosis of hysteria.

I'm also reminded of another old saying, the personal is the political. Individually, we are patients looking for an answer to our own particular health problems. But we are not looked at individually. Instead, we have so many stereotypes projected upon us based on our gender (and we should include trans men, by the way, who may not have a penis), social class, race, weight, disability, and so on. It seems obvious to me that doctors and medical researchers would be subject to these same societal biases.

Again, thanks for the great article.
 
"Powerful"? Do hyperbole and vulgarities make a blog powerful?

I wrote a comment in a completely civil tone on Cort's above referenced article that part of this blog's analysis is directly taken from. Apparently my thinking was poweful enough to plagiarize! Michelle shows a lack of respect not only for me but for all of us by resorting to such hyperbole and vulgarities. Since Michelle chose not to, I requote my comment here::(
Perhaps the gender specific aspects of this article were meant to be taken in the context of the historical treatment of women by the predominantly male medical community.

Years ago, gynecologists insisted there was no such thing as menstrual cramps. We women who complained of menstrual cramps were deemed hysterical. Those physicians were men, I assure you!

Women of my mother's generation were routinely prescribed and became addicted to an addictive benzodiazepine (valium) for hysteria and women's problems. This is not a personal recollection of my mother (she was not one of those victims, thankfully), just something that is a part of any basic women's liberation medical history.

Another part of that rather ugly history is men also medicalized childbirth taking it out of midwives' hands a long time ago (in the USA, anyway) so they could profit from it. Then doctors ridiculed the idea of washing hands before attending a woman in childbirth to prevent mysterious epidemic of childbed fever that killed women after doctors would go from autopsies straight to delivery rooms without washing their hands.

For an historical viewpoint on how male doctors treat female patients and how this is relevant to CFS, I urge you to read the wikipedia entry on hysteria part of which I quote here (red lettering is my emphasis):


http://en.wikipedia.org/wiki/Hysteria
In the early 1890s Freud published a series of articles on hysteria which popularized Charcot's earlier work and begun the development of his own views of hysteria. By the 1920s Freud's theory was influential in Britain and the USA. The Freudian psychoanalytic school of psychology uses its own, somewhat controversial, ways to treat hysteria.
Many now consider hysteria to be a legacy diagnosis (i.e., a catch-all junk diagnosis),<SUP id=cite_ref-4 class=reference>[5]</SUP> particularly due to its long list of possible manifestations: one Victorian physician cataloged 75 pages of possible symptoms of hysteria and called the list incomplete.<SUP id=cite_ref-5 class=reference>[6]</SUP>

Current theories and practices

Current psychiatric terminology distinguishes two types of disorder that were previously labelled 'hysteria': somatoform and dissociative. The dissociative disorders in DSM-IV-TR include dissociative amnesia, dissociative fugue, dissociative identity disorder, depersonalization disorder, and dissociative disorder NOS. Somatoform disorders include conversion disorder, somatization disorder, chronic pain disorder, hypochondriasis, and body dysmorphic disorder. In somatoform disorders, the patient exhibits physical symptoms such as low back pain or limb paralysis, without apparent physical cause.


There are currently efforts to categorize CFS/ME as a somatiform disorder in the DSM. Sound familiar?

Sorry to any gents who may be offended, I believe Cort is just bringing our illness into proper perspective. Perhaps many younger people and many men may not be aware of the struggles the female gender has had with modern medicine because many of the gains mine and previous generations of women fought for are now taken for granted. If you're not aware perhaps that may be taken as a sign of progress, but please do not discount this ugly legacy of misogyny. It's very much affected the way CFS has been and still is perceived.
 
Hello illsince1977, I had the experience of reading Susan Sontag's 'Illness as Metaphor' and she nailed everything I wanted to write about CFS in her book in the 1980s! This is broader than feminism, and in my mind 'somatised' disorders go beyond misogyny and into an even scarier realm whereby doctors imply that we have the magical capacity to will ourselves sick or well. Many cancer patients experience similar pressure to CFS/ME patients to 'will' themselves better. I had a friend who after a 10 year battle with breast cancer felt like a failure because it had beaten her. Somehow the medical profession continues to ascribe astonishing transformative powers of the mind to the body. See the tumour suppressing cells die because of the patients negative mindset! It's all crap, and ultimately, blame the victim.
 
Nermalina-

I agree with you. It's definitely broader than feminism. A dear friend visited me recently and just couldn't keep herself from telling me, as she does every time we speak, that I should keep a positive attitude - that it is key to my getting well. I told her "That is just cruel. Would you say that to a dying cancer patient?" The irony is this woman has lost a husband to colon cancer, has one bipolar child, another with CFS, lost her father to some rare disease who would not have died if antibiotics had existed when he died, and has asthma herself, none of which seem to be affected by hers or the sufferer's thinking one way or the other. Yet somehow she doesn't see that attributing healing powers to "positive thinking" implies a lack of "will" to those who are sick.

Doctors doing that stuff is lazy, cruel and unscientific. Journalists love the sensational nature of this thinking. The society at large is all too willing to follow like sheep and join in to blame the victim, until they themselves have become the victim! Then it's "Where are my drugs?" and "How dare you not take this and me seriously and treat my illness scientifically?"
 
I'm bothered by it being called a "female" illness for the same reason that women are bothered when veterans issues are seen as a "male" issue. This kind of labeling excludes one entire birth group from being acknowledged as having a problem. And as for this "men in charge" thing supposedly resulting in female associated illnesses getting less money, compare how much attention and money is going to prostate cancer versus breast cancer. When it comes to these biggies, it's men who are given less help.

Now, if you were to ask me if women have a harder time being taken seriously in the doctors office because there are more male doctors, I would say "yes." There are trends in style of communication, and I think we need more female doctors to bring more understanding here. But please spare me this "all the fault of men" talk. It is no different than if someone were to blame the problems of this country on women by pointing out that women outnumber men and dominate the electorate.
 

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