The denial of women's pain and disease as real: some of the history of this practice which clearly hurts CFS/ME patients.

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I read a book about chronic disease, in general, which does include CFS/ME, called "Kingdom of the Sick," by Laurie Edwards. In the book, Edwards cites another book as a reference, called, "All in My Head: An Epic Quest to Cure an Unrelenting, Totally Unreasonable, and Only Slightly Enlightening Headache," by Paula Kamen. https://www.amazon.com/All-Head-Unrelenting-Unreasonable-Enlightening-ebook/dp/B003PJ6UI4
I'm still working on "All in My Head," but I thought I'd share one page from that book, which talks about how even "feminists" had turned their backs on CFS/ME patients, and women's pain and disease. I highly suggest Maya Dusenbery's book, "Doing Harm," too.
https://www.bitchmedia.org/article/in-sickness/tired-girls-feminism-chronic-illness

I can't stress enough, that the problems faced by those of us with CFS/ME, are nearly identical to those of people in other patient communities. I believe that collaboration between all patient groups affected by "official" medical disbelief, is necessary for things to change for CFS patients. Plus, it never hurts to have people in your pocket who are more mobile than you. It's sort of like, "well you have no arms, and I have no legs. I will do the writing and you will run errands." Collaboration among the sick is never a bad idea.
So, Kamen's book provides a short history of how many diseases affecting women, like CFS, came to be "debunked." LOL, Kamen is pretty clever with the title of her book, since it was her migraine headaches which doctors attributed to "feminine hysteria." You may recognize some names in the article, some are known for treating CFS as a joke.
 
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used_to_race

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Since I'm not a woman, I obviously don't know what it's like to be a woman. I do, however, go through similar health issues to many people on this board, and I have had many experiences with dismissive doctors despite being a white male. The most helpful doctor I've found is a white male but has plenty of female patients, on whose behalf he really tries.

even "feminists" had turned their backs on CFS/ME patients, and women's pain and disease.
Doesn't this suggest that it's not strictly a women's issue and more of a "humans being mean to each other by nature" issue? Dismissive people will latch onto the easiest justifications to dismiss the suffering of others. Whether it's "women's hysteria" or telling overweight people with unrelated health issues to "just lose weight", it's the dismissal that is the problem, and maybe sexism is just along for the ride in some cases.
 
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I agree that human beings are mean to each other, but I suggest the people who do that, reserve the behavior for in situations where they can get away with it- generally because they are cowards. This means that vulnerable groups or politically disenfranchised groups are the primary targets of "bullies."

I think it may go further than the urge to bully. It's clear that some men see women as objects to fulfill their sexual needs, and nothing more. And who cares about the health and well being of an object? When even a dog can better health care than a woman, isn't that saying something? We don't even treat our animals as bad as we do CFS patients.

Is it "human nature" for men to treat women poorly? That way of putting it is problematic. I'm of a number of people who dispute "human nature," as an explanation for all rotten behavior. Why? Human nature is way too broad of a term, and misses the fact that there are clearly two types of people in the world. Personally, I'd classify those groups as a) people who lack empathy and exploit others and b) people who have empathy and don't exploit others.

People who lack empathy aren't everyone, and if everyone was that way, I'm sure our species would die off rapidly. I'd be smarter to say that there people in the world who are shut down emotionally, and this is the source of our so-called "human" problems.

I heard at a lecture, that when the emotional, or mammalian brain is shut down, the reptilian brain takes over. People who shut down their emotions are left in a frame of mind predominated only by primal urges. Impulses, survival and pleasure seeking is what the reptilian brain is centered on. It's like how lizards are preoccupied with nothing more gulping down flies, and not much else. Are there people like that? Yes.

What do you get when you take emotional awareness and intelligence away from a person? A person controlled by Richard Dawkins quintessential "selfish gene." Dawkins said in his book, The Selfish Gene, that prime goal of DNA is to replicate itself. What is the prime directive of someone lost in the reptile mind? Bodily functions, namely dispersing one's genetic code all over the planet- like how viruses and bacteria work. This raises the question, what are women to someone like that? Probably little more than replication machines, I'd guess.

Whether or not, evidence shows women are denied equal access things like equal pay, the chance to advance to powerful positions, both in politics and work places, and medical care. It's clear women are fettered by many males, at every opportunity. Why?

We spend millions sending up space probes to search for intelligent life out in the universe, and yet we can't even respect what intelligent life we have on earth? How stupid is that? Reducing the unparalleled marvel of the human mind to an inanimate object, and damaging it, is like taking a hammer to a high-end compute. Nevermind, someone could have used the computer to do great things. It's gone and no one is bringing it back.

What I keep in mind, is that often comes back around, and that's not cliche, it's inevitable. All actions have consequence. Destruction only results in destruction, it can never result in good.
 

used_to_race

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I think it may go further than the urge to bully. It's clear that some men see women as objects to fulfill their sexual needs, and nothing more. And who cares about the health and well being of an object? When even a dog can better health care than a woman, isn't that saying something? We don't even treat our animals as bad as we do CFS patients.
Sure, some men see women as objects to fulfill their sexual needs, and comparatively fewer women do the same with men. There are also LGBT people who view others like this. In any case, I completely disagree with the second part of this claim and feel that it has nothing to do with the first part. A dog doesn't get better health care than a woman, it's a ridiculous comparison. There's no data on "dogs with CFS." People euthanize their dogs when they get medical conditions which are too expensive to treat. To say women get worse health care than dogs is literally untrue in every country in the world.

I heard at a lecture, that when the emotional, or mammalian brain is shut down, the reptilian brain takes over. People who shut down their emotions are left in a frame of mind predominated only by primal urges. Impulses, survival and pleasure seeking is what the reptilian brain is centered on. It's like how lizards are preoccupied with nothing more gulping down flies, and not much else. Are there people like that? Yes.
I'm laughing because this is bordering on hate speech towards men. You're implying that men have lizard-level cognition, providing no sources for your fanciful claims that surely have no basis in modern neuroscience, and answering your own rhetorical questions.

What do you get when you take emotional awareness and intelligence away from a person? A person controlled by Richard Dawkins quintessential "selfish gene." Dawkins said in his book, The Selfish Gene, that prime goal of DNA is to replicate itself. What is the prime directive of someone lost in the reptile mind? Bodily functions, namely dispersing one's genetic code all over the planet- like how viruses and bacteria work. This raises the question, what are women to someone like that? Probably little more than replication machines, I'd guess.
Hey guess what, women have genetic material too. Obviously this claim is wrong because if you were right then women would be running around trying to reproduce constantly too. But they're not because humans are complex, men and women alike. Also DNA is a molecule... it doesn't have a "prime goal." You're distorting what Dawkins says in his book.
 
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You have a point, I think it's clearly just some men with insatiable sexual appetites, and maybe genetics doesn't account for it. However, men are hardwired to have sex in a way women aren't. I will be fair and say there are some women who want babies to the point of excess. The point is, still, women are largely oppressed, there are sexual motivations involved in the oppression of women, and there is no excuse for it. Male or female, we should all aspire to things higher than instinct and the will to procreate. A friend once said, "nature wants babies." He was right. Letting nature dictate your actions over using your higher human brain, never results in good things for either sex.
 

vision blue

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makes me think off hand of two things. One is in the recent popular book "Am I dying", it dismisses CFS and says if you have only that then your life may be changed by "talk therapy".

Another is recent online visit i had with an AmWell doctor. My wrist was swollen to at least twice normal size and was very visible even on camera and to him. I had mentioned my assorted chronic health issues for context of weird stuff that crops up in me and he wanted more info so i figured he was being thougful. He's been in practice for 50 years,so he's certainly one of the old school types. When i was done with that he said whenever you see someone with so many medical problems, we think "psychosomatic". I tried to contain myself - 2 minute judgement from some jerk - and pointed out i was there for a swollen wrist. I don't think he actually thought my complex medical situation was psychosomatic - in a way that's worse. his personal opinion was that I was not a head case. However, his training as a doc was telling him that he's supposed to suspect psychosomatic in this sitatioon. (though atgain, i don't know how they fit in the wrist swelling of no known cause).
 
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Forgive my bleak post about Dawkins. I don't really buy into most of what Dawkins says. I am right now just reeling at what now is finally discussed: women have had their pain and disease dismissed by doctors based upon absurd, outdated ideas. Until recently, I had no idea that what has been experienced in the CFS community, has been experienced by so many women. It's appalling.

All too many women had experienced this from this same sort of dismissal. Woman have died from this. People here have died from this.

While it is good this all is coming to light, the fact is there are some of us out there who haven't lived to see this day. They cannot be brought back. The sheer inhumanity of it, no matter how much I think I'm used to it, still floors me. I can only work hard for others, and work to see future patients NEVER have to live through this nightmare. I will use my talents and effort to help this community of brave, wonderful, truly proven people.

This is an atrocity, it was willfully committed by other people and nothing can ever erase that fact.

Now that statistics are coming out saying some 47% of women have had an experience being dismissed by a doctor, based on the assumption women are emotional and "hysterical."

To understand what truly is at work here, I have done more reading and learned more about Elaine Showalter, the alleged femininst who Paula Kamen lists as working to discount women's diseases. Further reading showed me that Showalter worked closely with Simon Wessely:
From: https://quackbengoldacre.wordpress.com/professorsimonwessely/
"Professor Wessely should be granted a dictionary of his own, so
far has he stretched the meaning of the English language while
attempting to explain that ME although a ‘real’ illness, is often first
imagined. He has trodden the tightrope of confusing semantics with
the balance of Blondel and the focus of a train spotter.

In the late 1980s, as described in part one, as a member of the
newly-formed Campaign Against Health Fraud, Wessely collaborated
closely with former trade magazine hack Caroline Richmond, the
campaign founder, who played a leading role in helping him to publicly
demolish the scientific categorisation of ME and to redetermine
it in the minds of the public as a sham illness. His collaboration with
Richmond, and later with the feminist literary critic and professor of
humanities Elaine Showalter, empowered both Richmond and
Showalter to speak with spurious authority at conferences and seminars
on ME, CFS and Gulf War Syndrome, despite their complete lack
of medical expertise or education. Showalter has become deeply
involved in Wessely’s forays into military-funded research into GWS.
Her atrociously muddled book, Hystories: Hysterical Epidemics and
Modern Culture, suggests that ME, GWS and such things as claimed
alien abductions are all equally part of a contemporary hysteria.
https://quackbengoldacre.wordpress.com/professorsimonwessely/

I think this may show that there is self-perpetuating feedback loop at work. The denial of CFS has indeed played some role in the denial of women's health issues and pain- yet attitudes about women being prone to emotional instability, has fed the rhetoric on CFS. One problem feeds the other problem.

Are CFS deniers exploiting this sexist blindspot in medicine? Probably. Hysteria appears to have been used by Wessely et. al. However, I believe he has interests, both political and economic in denying CFS, so sexism and oppression of women, aren't likely the core motivations at work here.

This next quote from the article, "Why Don't Doctors Take Women's Pain Seriously" explains how the idea of hysteria factors into poor health care for women:
"There’s a haze over the window of my memories in my 20s: Certain details and entire days that I can’t recall. “Don’t you remember how we could barely go hiking?,” my best friend asks me. “Remember all those days you called me crying in pain?,” my mother will remind me. I’m silent because I’ve blotted out those days: Days where my pelvic pain made it difficult to wear my favorite jeans, do strenuous activities, sit for long periods, have sex—because now in my 30s I have convinced myself that much of the pain I experienced was in my head.

It’s a story women have been telling themselves for millennia, largely due to society’s dismissal of women’s pain. The word “hysterical,” after all, comes from the Latin term hystericus or “of the womb,” and the Ancient Greeks believed hysteria was caused by a disturbance in women’s uteruses. Our wombs, and thus, women have been permanently linked to society’s views of emotional excess, instability, and delirium. We are told we are not in pain, we are being overly dramatic, emotional.

This narrative is familiar one for Feministing.com’s Maya Dusenbery the author of Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick, published this month by HarperOne, which examines sexism in healthcare. Dusenbery writes about women’s pain and illnesses being overlooked because of their menstrual cramps, menopause, even entering motherhood. In her introduction, she notes: “Fat women report their ailment is blamed on their weight; trans women find that all their symptoms are attributed to hormone therapy; Black women are stereotyped as addicts looking for prescription drugs, their reports of pain doubted entirely… there is often the same current of distrust: the sense that women are not very accurate judges of when something is really, truly wrong in their bodies.”
https://www.damemagazine.com/2018/03/19/why-dont-doctors-take-womens-pain-seriously/
The problem with people not believing women’s reports of illness and pain is that we start to doubt ourselves, and when women start to doubt ourselves our lives are literally at risk."[/quote]
Thankfully now, there is ample press coverage showing how so many women- and men- have had their physical problems attributed to psychological instability. Google "doctors dismissing female pain patients," and now you see many articles, all now by major press outlets. Here are some of these:

http://www.bbc.com/future/story/20180523-how-gender-bias-affects-your-healthcare
https://www.theguardian.com/lifeandstyle/2017/nov/20/healthcare-gender-bias-women-pain
https://www.forbes.com/sites/quora/...heres-the-historical-reason-why/#1acbd5cf2abc
https://www.independent.co.uk/life-...mean-doctors-ignore-womens-pain-a7157931.html
https://tonic.vice.com/en_us/articl...-sexist-in-med-school-and-female-patients-pay
https://www.thecut.com/2018/03/doctors-dont-know-how-to-deal-with-womens-pain-books.html
https://www.lennyletter.com/story/when-doctors-dismiss-womens-pain
https://www.health.harvard.edu/blog...ies-in-experience-and-treatment-2017100912562
https://newrepublic.com/article/147303/reality-womens-pain
 
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@Annikki
I clearly agree with much of what you say in your OP.

I say 'clearly' because I posted a thread on this over 2 1/2 months before your thread here, with many of the same article links.
https://forums.phoenixrising.me/thr...ds-women-are-often-treated-differently.62540/

It got close to zero response. I guess I just didnt irritate enough people. I also didn't use ME/CFS in the thread's title, because I think this is endemic, regardless of your disease, illness, or health issue. My mistake.

Keep up the good fight. :woot::woot:
 
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It got close to zero response. I guess I just didnt irritate enough people.
I"m laughing slightly because I went over to visit the rumored thread YYow started. And I considered starting to respond and felt overwhelmed: so MANY examples of medical dismissal and abuse that I : became paralytic and left. Maybe thats the reason it didn't launch. We all had too many examples to provide!

So here we are, here, and I noticed the overlap. These are very concerning and troubling phenomena which needs to be: really paid attention to.

Some of this is inherent in the medical system as opposed to: the general male or female Point of View. My most dismissed era of seeking help was from a Female Doctor. She also got angry at me one day when I expressed some frustration. Apparently while receiving zero assistance, one is not to express any frustration. And of course this female doctor mostly viewed my issues as: I should take an antidepressant which I refused (and then did, and then almost: Hari Karied).

Or: What did the dentist say? (about all that inflammation in your mouth). (our Mouths consist of more than our teeth). (Like can you actually believe that somehow "teeth" got separated from our bodies are not considered: part of our bodies).

I had never thought about the connection between Hysterical and Hysterical-rectomy.

I sometimes just ponder this: that doctors do mostly want to help. But they don't know how. So we represent their failures, a system failure. (We, I mean folks with ME or ME-type things). We are the reminders that just write a prescription for some random pill: does not typically solve our problem. So we are a physical manifestation of: what they didn't learn enough about, the whole body system as opposed to just some: part.

And the five minute appointment schedule: fails totally fails in our arena.

And every single test you've recommended i get has nothing to do with answering the question: why am I this sick and what is to be done about it. So I remind you that: all this does not seem to work well.

Of course there is also the complex psychologies inherent in a) who is attracted to medicine; and b) why are you so motivated. I got biology degrees. I took classes with Pre-Med students. 99% were male. 85% were entirely motivated by: ego and money. So its the 15% we need. The caring, loving, thoughtful healers. And researchers.

My most recent: abused session occurred at the dental surgeon. They requested a very detailed medical history and then: when the dental surgeon arrives, he decides to be entirely dismissive of what I have just told them about the inflammatory crap that happens which causes my teeth to feel like they are being squeezed out of my head.
Issues with General Anesthesia as an ME patient and genetic red head are real and those were also dismissed.

He literally said: I do not believe you, you would have to prove that to me. (my description of how I don't think tooth implants will work in my mouth).
 
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@Rufous McKinney
I should take an antidepressant which I refused (and then did, and then almost: Hari Karied).
I had the same experience. Almost killed me. And depression so deep and black and oily that death seemed like an adequate alternative. It was frightening.
We are the reminders that just write a prescription for some random pill: does not typically solve our problem.
Yes. And you sum up the rest of the problem really well, too. Their egos will NOT let them say: I don;t understand this. I'll have to do some research and get back to you." Because the pinched little souls that seek status and piles of $$$ via the title "Dr" would NEVER let them admit to any shortcoming, ever, largely because they know that deep down, that's all they have: massive accumulations of shortcomings.
85% were entirely motivated by: ego and money. So its the 15% we need. The caring, loving, thoughtful healers. And researchers.
I had a Dr like that about 10 years ago. He didn't try to hide his contempt for most of the doctors who had treated his patients previously, whose damage he tried determinedly to reverse. He was very nearly hounded out of the profession, and turned up dead in his hot tub. It was written off as a suicide.
He literally said: I do not believe you, you would have to prove that to me. (my description of how I don't think tooth implants will work in my mouth).
God, that makes me so angry that I'm actually sputtering. If you reported that to the ADA, and if they were an honest association (which I really seriuosly doubt), he'd be brought up before a hearing and a permanent reprimand would be placed in his file with them. Three strikes and you're out.


I'm so sorry you had that experience McK. It's shameful, indefensible, horrific. :hug::headslap: :aghhh:
 
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I'm so sorry you had that experience McK. It's shameful, indefensible, horrific.
Funny: my main dentist SAW all this inflammation so he can testify its true. Funny: he said that would happen to him if he ate nuts. I said: this is not allergies. BUT I now two years later better understad that this IS a HISTAMINE REACTION. Mast Cell stuff I suspect and part of this swirl.
 
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My nice dentist then tried to help by prescribing a fix. He gives me something the pharmacist has to compound, and therefore will not be paid for by the insurance. They mix something with like Mylanta and some numbing thing and some other thing. So it felt ok Day 1, soothing. Day 2: my throat has shut down, closed, and I can swallow nothing. I throw away the $75 bottle of stuff. My throat was already the Sahara Desert, with Eppstein Barr, without adding; dessicants.
 
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@Annikki
I clearly agree with much of what you say in your OP.


I say 'clearly' because I posted a thread on this over 2 1/2 months before your thread here, with many of the same article links.
https://forums.phoenixrising.me/threads/medical-sexism-–-it’s-not-all-in-our-minds-women-are-often-treated-differently.62540/


It got close to zero response. I guess I just didnt irritate enough people. I also didn't use ME/CFS in the thread's title, because I think this is endemic, regardless of your disease, illness, or health issue. My mistake.

Keep up the good fight. :woot::woot:
Thanks for pointing out your thread. I, too, struggled for a way to present this important subject. I also think because most of the people here in CFS land are so used to being dismissed, it isn't actually big news here, save for the sexism factor.

I think the sexism factor is a big deal, because it takes discussion about refusing to treat and gaslighting patients and makes it relevant to everyone, and not just the CFS community. Also, I like the media coverage about this because it makes what you describe about your predicament, seem less like a "fish story."

We give way, way too much power to doctors to define illness, and unless the lived experience of the sick patient is listened to, research into women's diseases, like CFS, will continue to stall out. This has to change. To get it to change, we need greater numbers of people to get involved and collaborate.

Now, there are so many published articles about this, it would take hours to collect the links. Another interesting thing, is that when this subject is discussed, many women will come out and post stories about going through this. Case in point:
 
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@Annikki
I think the sexism factor is a big deal,
I couldnt agree more. So many Drs tend to be massively misogynistic, not sure why. Maybe it's just an extension of the fairly obvious contempt they seem to have for all their patients, taken to another degree or level. Mybe they're afraid of us. Who knows. Or cares. I've had so many dismal experiences that I've lost count, and pretty much any willingness to take myself into a Drs office ever again.
We give way, way too much power to doctors to define illness,
Oh boy howdy and hallelujah. It took me a long time to realize that the only expert in the exam room regarding my particular condition, whatever it turned out to be at the time, turned out to be me, and I knew less than nothing. Very dispiriting.

But I agree Annikki, we have to keep up the battle because what's left for us if we don't.

So keep on punchin' girlfriend. I'm right there with you. On my good days. Which this one isn't.
 
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@Annikki

I couldnt agree more. So many Drs tend to be massively misogynistic, not sure why. Maybe it's just an extension of the fairly obvious contempt they seem to have for all their patients, taken to another degree or level. Mybe they're afraid of us. Who knows. Or cares. I've had so many dismal experiences that I've lost count, and pretty much any willingness to take myself into a Drs office ever again.

Oh boy howdy and hallelujah. It took me a long time to realize that the only expert in the exam room regarding my particular condition, whatever it turned out to be at the time, turned out to be me, and I knew less than nothing. Very dispiriting.

But I agree Annikki, we have to keep up the battle because what's left for us if we don't.

So keep on punchin' girlfriend. I'm right there with you. On my good days. Which this one isn't.
Thank you!:) I hope a good day comes soon for you. I just focus on surviving the bad days in the hope some day, I and all of us will see a much deserved reprieve from all this. I shouldn't have made it this far, I don't know how I made it this far. It gives me great hope to see these problems which seem overwhelming and hopeless, finally discussed in the media. I lost my life not just due to disease, but due to what medical authority has said about it. My words have counted for nothing as a result. I learned the hard way you can't tell people who are not sick what really is happening. It's sort of sad that it takes another authority, the media, to give us all a voice. Rather than lament that the voice of a suffering person counts little in this world, I'd rather use it as an opportunity to have us all believed again. I think we all are heroes, we are all surviving the impossible. We deserve to have those around us honor and respect who we are and what we've achieved.

Here is Samantha Bee, with her take funny take on the dismissal of women's pain (endometriosis, in this case):
 
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@Annikki
Tried to play the link, but it just kept loading with that spinning Wheel Of Death laughing at me unpleasantly. Will come back later and try again. Thank you for posting it, it's a subject that definitely intersts me. Profoundly.
Go to youtube, and search for the video, "Do doctors ignore women?" That's what everyone should do- go directly to youtube to view the video. Why? The point of my post was to show how many women shared their own stories about sexist dismissal of their disease and pain in the comments section of this video. I couldn't count all of them, there were so many. When I posted I forgot that it displays the video here, instead of linking directly to Youtube. Your problem actually helped my post!
 
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@Annikki
I cam back this AM and was able to play the embedded YouTube with no problem. I also use the YouTube option to switch from watching on this page to going directly to the video in YouTube, which would allow users to store it i their systems for future use as well.

Again thanks for this video !! And for the other two as well. Gotta love Samantha Bee!!!
 
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@Annikki
Again thanks for this video !! And for the other two as well. Gotta love Samantha Bee!!!
You're welcome! I love Samantha Bee, too! I'll also be trying to find a way to get #harmedmetoo popular, so everyone who has been through this can use that place to tell their story. It's good it's getting more coverage, but I want this topic to go viral. To get the change we need, it will need to go viral. I'll see what I can do on my end.