NYT Trivializes ‘Nebulous’ Pain of ‘Middle Aged Women’
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Posted by Paula Kamen January 18th, 2008 |
For the millions of women in America debilitated by chronic pain, the page one article in Monday’s (January 14) New York Times was like a punch in the gut, taking their quest to get medically treated back decades.
With a tone of barely hidden scorn, the article reinforced the most vicious Civil-War Era stereotypes of women in pain as hypochondriacs, hysterics and layabouts.
The story, by Alex Berenson, “Drug Approved. Is Disease Real?” debated the reality of the specific disease of fibromyalgia. The news hook was Pfizer’s desired promotion of its new drug Lyrica to treat fibromyalgia, and the Times’ question if this was just a marketing scheme to cash in on desperate women.
A red flag is that, as the article described early on, fibromyalgia primarily affects women — and even worse, ” middle-aged women.” Combined with the fact that pain is invisible, and it is a primarily female disease (like most pain and fatigue disorders), the burden of proof the article demands for fibromyalgia patients is unduly heavy, laden with double standards that other patients do not face.
Another immediate red flag was that Berenson immediately added that these patients are likely to suffer from “other similarly nebulous conditions, like irritable bowel syndrome.” First of all, Berenson has used the world “nebulous” to show his own bias; this was not a quote from a source. Meanwhile, Berenson fails to consider the basic medical concept of co-morbidity, or of one brain chemistry imbalance underlying one disorder as likely to cause others. This follows the old “logic” that to discredit a woman’s pain, a doctor would show that she complained about “too many ailments” and had “somatization disorder.” This meant that after a certain number of problems, she was just a hypochondriac seeking attention — and all of her complaints were invalid. But neurologists now widely accept the co-morbidity model that logically demonstrates that if one person is wired with one pain disorder, she is wired to have others.
Before reading the article, I knew the skeptical tone it would take by the caption under the picture of a female patient sitting in her bed. The caption described the woman as not having fibromyalgia, or being diagnosed with it, but that she “says she has fibromyalgia.” Through the ages, researchers have documented how doctors are more likely to say a male patient “has pain” but a female patient “says she has pain.”
Like other pain disorders, fibromyalgia has also been disbelieved because it’s invisible. In every society, doctors judge the reality of the pain according to how it can be detected by their current diagnostic tools, always considered absolutely definitive. (In the Victorian era, anything not detectable by a microscope, then considered the ultimate in high tech, was the litmus test.) But just in the past decade, we have developed very sophisticated brain scans tracing blood flow that indeed do demonstrate that patients diagnosed with fibromyalgia have brains more sensitive to pain. Berenson admits this, but then quickly disqualifies it as an argument because doctors admit they “cannot determine who will report having fibromyalgia by looking at a scan.”
This is a double standard. With such scans, doctors can also trace differences in processing activity, for example, in the brains of people with depression. But like with pain disorders, doctors do not use the scans for actual diagnosis. These scans are mainly used for research purposes, not to treat patients with complex neurological problems, that can’t be traced to one particular action in the brain.
This critique also follows the old paternalistic pattern that a woman’s pain is not real until a doctor declares it so. Her word is not enough.
Gladly, at least online, today the Times published some sound critiques of the article. And various established advocacy groups, such as the National Fibromyalgia Association , have published defenses. But the damage of this page-one story is already done.
January 20th, 2008 18:05
I too was very upset at the backward and cruel tone of that piece. A close friend has fybromyalgia and can tell you it is very real. Fortunately she has a treatment team and is able to function at her personal best, albeit with great difficulty.
January 21st, 2008 15:33
Discovered Etiology & pathophysiological mechanisms of
CRPS/RSD/ Causalgia, Chronic pain
Richard Qian of the Medical College of Wisconsin.
————– Present diagnoses criteria are over-strict, far away from truth.
Dec. 10, 2007
Dear RSD/CRPS patients and medical professionals:
I have discovered Complex Regional Pain Syndrome (CRPS/RSD/ Causalgia) etiology (Causes or origins), objective diagnosis tests, cure treatments and prevention. It is first time for human being to know this in the world. It means I have discovered the primary, major pathophysiological mechanisms of Complex Regional Pain Syndrome (CRPS/RSD). These new causes/mechanisms can give 95% explanation of all issues of CRPS and its mystery. The “Complex” is only number TWO which include only two easy-understanding mechanisms. I am medical biologist and working in Medical College of Wisconsin. I like to give 30 minutes presentation any time to show my discoveries’ authority and easily understanding by medical professionals and patients.
Richard Baogang Qian, MD. Research Associate.
(Co-author Rong Zhao, MD, PhD.).
The Medical College of Wisconsin
Department of Physiology, Room 545
8701 Watertown Plank Road
Milwaukee, WI 53226
414-4568553 (O)
414-6303727 (C)
bgqian@yahoo.com
January 22nd, 2008 13:13
[…] For more responses to the NYT article, check out: ChronicBabe, WIMN and the National Fibromyalgia Association. Also, be sure to read the Letter to the Editor responses to the NYT article here. […]
January 25th, 2008 14:43
Etiology/Cause & pathology of CRPS/RSD/Causalgia (Chronic pain) Discovered
Richard Qian of the Medical College of Wisconsin.
————- The discoveries lead to cure and prevention
Dec. 10, 2007
Dear RSD/CRPS patients, veterans and medical professionals:
Hi, I am Richard Qian, Scientist of Medical college of Wisconsin. 148 years after the RSD discoverer, Dr SW. Mitchell, the Father of American Neurology, described RSD and left all relative questions to us, I have answered these questions. I have discovered Complex Regional Pain Syndrome (CRPS/RSD/ Causalgia) etiology (Causes or origins), objective diagnosis tests, cure treatments and prevention. It is first time for human being to know this in the world. It means I have discovered the primary, major pathophysiological mechanisms of Complex Regional Pain Syndrome (CRPS/RSD). These new causes/mechanisms can give 95% explanation of all issues of CRPS and its mystery. The “Complex” is only number TWO which include only two easy-understanding mechanisms. I am medical biologist and working in Medical College of Wisconsin. I like to give 30 minutes presentation any time to show my discoveries that are easily understood by medical professionals and patients.
I have read thoroughly Dr S. Weir Mitchell’s original books about RSD/Causalgia (1864 and 1872. Dr Mitchell is the Father of American Neurology and discoverer of RSD/Causalgia), all of RSD papers from Pubmed and keep any details in mind. I have tried to answer any possible questions for my discovery, and have gotten 99% answers. This gives me one hundred percent confidence about my discovery.
Richard Baogang Qian, MD. Research Associate.
(Co-author Rong Zhao, MD, PhD.).
The Medical College of Wisconsin
Department of Physiology, Room 545
8701 Watertown Plank Road
Milwaukee, WI 53226
414-4568553 (O)
414-6303727 (C)
bgqian@yahoo.com
February 1st, 2008 16:43
(I posted this reply. It has not appeared as of yet.)
Pain, as an invisible disease, leaves the patient at the mercy of the medical community.
Even if there are objective signs, as in my case with trigeminal neurlgia - a severe facial pain disorder, one has to have luck in finding a doctor who hears the complaint of pain as the main symptom and is willing to accept and treat it.
“She says she has pain” beautifully encapsulates the prejudice against women and pain and women in pain.
Even the UN Convention on the Rights of the Disabled has acknowledged chronic pain as a disability. Unfortunately “as the world goes” is not applicable with pain. (The U.S. has not singed the Convention.).
I do not know what it will take to make the refusers accept the reality of chronic pain as a disorder to be treated and those suffering with it as people worthy of respect and treatment.
Thank you.
Carol Jay Levy
author A PAINED LIFE, a chronic pain journey
https://www2.xlibris.com/bookstore/bookdisplay.asp?bookid=18435
member, cofounder with Linda Misek-Falkoff, PWPI, Persons With Pain International
member U.N. NGO group, Persons With Disabilities
February 1st, 2008 17:20
Carol, we never saw a previous reply from you; perhaps it never came through. In any case, we’re glad you tried again.
February 1st, 2008 18:35
Thank you. (I didnt want to post the same reply more than once.)
February 1st, 2008 21:35
I don’t know…those doctors in the Times are so very well-educated — maybe they’re right. Hmmm…let’s see what we’ve got.. a bunch of so-called fibromyalgia patients who are…. Fat… Emotional… Middle-aged… Attention-seeking… Lazy… and Easily confused ….what was that? Oh yeah, now I remember —–> F-E-M-A-L-E- !!!
I ask, how huge must a doctor’s ego have swelled to think that women have nothing better to do with their time than hang around medical clinics just to get a little love and attention? If a doctor can’t properly diagnose or treat a condition how does blaming the patient become a rational next step? . A sane physician would say “I don’t know what’s causing this pain, but I’ll try to make the patient as comfortable as possible and I’ll keep looking for an answer.” If a mugger attacked and injured me, my testimony would be admissible in court, but when the origins of the illness spring from my own body I am often considered a suspect witness to my own pain.
Fibromyalgia isn’t medically understood or well-defined yet, but diminishing the patients’ description of their own pain and suffering accomplishes nothing;
we might be “Fat” — you would too if you hurt every time you moved;
we might be “Emotional” — try hurting 24/7 and not get a bit ruffled;
we’re often “Middle-aged” — yeah, and you aren’t?;
“Attention-seeking” — We’d hoped that you had some answers, otherwise, bud! we wouldn’t give you the time of day;
“Lazy” — see “Fat;”
and, we may even be “Easily confused” — I’ll give you that, it comes with the disease;
and finally, yes, we’re Female — we’re half the human population and we’re not going to put up with second class treatment any more. Get used to it.
Thankfully, there are physicians who respect and believe their patients and who are working with them to understand and treat fibromyalgia. It’s also nice to see Big Pharmaceutical working on new drugs to treat the debilitating pain of this disease. Whether or not the new batch of fibromyalgia medications work as well as we’d like, it’s nice to see they’re trying. If it works the cost per month for the medications? — just $85. But, finally being taken seriously by the national media? Priceless.
February 15th, 2008 14:11
I was googling Lyrica atricles and ran across this, not living in New York thankfully most people where i live have not read this trash that they published. No one wants to believe until it happens to someone close to them or themselves.
The spreading of this ignorance is criminal, a MAN should never had the reponsibility for that article. He stereotypes all of us Fibromyalgia sufferers as stressed, fat, lazy, and middle aged.
While i do believe the disease is overdiagnosed making it difficult for ppl like me with very severe Fibromyalgia to get the care, belief, and SSD we need, it is all very real.
I was diagnosed with Fibromyalgia on my 22nd birthday wheighing 125lbs at 5′4″. Before i got sick I was working fulltime and going to school part time while raising 3 children with ease, i wasn’t having any problems adapting to stresses before my Pnuemonia became Fibromyalgia. I’m still 125lbs 7 years later, i was not, and am not fat and lazy, and my problem is not “Adapting to stress”.
There is something neurologically going on beyond my control, and they can bash the drug companies all they want, but as long as the drug companies keep researching treatments for Fibromyalgia then i’m happy. I have been taking Lyrica for 3 weeks now, and am able to do more than i could before, my pain lvl goes down from a 7 to 6 for example, but any improvement and i’ll take it, cause only a true sufferer could even imagine the pain. My only side effect so far is exaggerated hapiness and a compulsion to talk. Honestly i don’t consider those bad side effects. But if Lyrica is working when every other drug i’ve tried has failed, and i’ve tried most of em out there, then it’s not just in my head.
How Lyrica works out in the long run for me is yet to be seen, but i’m gonna take my reprieve and be happy with it.
Many years ago my grandmother, before i was born she passed, but she was sick like me, they diagnosed as RA at the time when there was no test for that, but it was proven medically real later. I think she probably had severe fibromyalgia like me that was misdiagnosed back then.
History and my reality tell me Fibro is REAL! Anyone who says otherwise is ignoring heartlessly the real suffering that us who have Fibromyalgia face. Where was the NYT editor on this one
March 1st, 2008 09:53
I’m in too confused to think or write well, but I can read even though I forget what I’ve read the second after… anyway–thanks to all who responded to the article and thank you Paula.
My question: Can’t we sue them for defamation of character?
I face discrimination, more often than not, from the medical community the minute they look at my list of medications and diagnosis of FMS/CFS/MPD.
Last year, I broke my upper-arm and didn’t seek treatment because of the response I get when I have to go to the ER. I suffered with it for months and it finally healed on it’s own. I found out I had broken after I took a fall and had a shoulder x-ray.
In that fall I tore all four rotator cuff tendons. They were “dangling” and it was a very serious injury. It took them 8 weeks before they did surgery, four weeks before they did an MRI. If I had been a healthy young male, who was injured on the playing field, I’m quite certain it wouldn’t have taken that long for treatment.
If I could think, I’m at the point where I would find some way to help stop the discrimination. If I have personally experienced so much, I know others must too.
What can we do? I think we should sue them.
April 17th, 2008 10:07
I too was devastated by this article. Please see my website where I discuss this article.
womenandfibromyalgia.com
November 5th, 2008 04:16
As regards fat and lazy, I am became ill in July 1999 at age 62 not quite ‘middle-aged’
I am 5′8″ and weigh 134LBs., hardly ‘fat’
I carefully conserve what little energy I have so that I can go line-dancing on Monday afternoons, and go almost immediately to bed on arriving home from the class at 4p.m. I then spend most of Tuesday in bed or very quietly at home to pay the price for Monday’s folly. Does that make me ‘lazy’? I am a bright, cheerful person, I’m inventive and full of ideas, none of which I can do anything about, but I try very hard not to let living with frustration 24/7 get me down. I never go on a night out, I’m fininshed any time after 6p.m. most days, I never have a holiday, as I simply couldn’t face travelling. I still enjoy short car journeys, I’m in control, and sitting down with the air from the open window blowing scarce oxygen on my face, is when I feel at my best. When my present car pegs out (and it’s 11years old) I might as well take a powder, as I will be housebound and I don’t think I can face further reduction in my quality of life.
November 5th, 2008 04:37
Something which may be helpful to others is the list of complaints I eliminated at a stroke by simply giveing up all milk products except a little butter (I’m addicted to it), but it is probably the milk proteins present in liquid milks, yoghurt,and worst offender of all CHEESE. Igot rid of:-
1) terrifying nocturnal palpitations
2) severe joint pain in my right shoulder and
elbow.
3) complete elimination of all symptoms of irritable bowel, present for previous 22 years.
4) and this is a big one, an end to the feeling of total exaustion which I had experienced every waking morning of my life, getting out of bed took a massive act of will and I never in my life from my earliest recollection new anything else, I have since learned about caseo-morphines, so I guess that after the normal over-night fast I was experiencing “withdrawl” symptoms and it was only after a ‘milk fix’ that I started to feel human usually about 2 hours after rising.
So the arrogant hack who spouts ill-informed opinions and please note that opinions are NOT FACTS and should never be viewed as such. Wishing all suffering souls lots of Love, Light and Laughter, Joanie.