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Adrienne Dellwo

Doctor-Caused PTSD in Fibromyalgia & Chronic Fatigue Syndrome?

By October 15, 2009

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Have you ever left your doctor's office feeling traumatized? I'm not talking about the reaction to a diagnosis -- I'm talking about being emotionally traumatized by your doctor's treatment of you. I hear it all the time from people with fibromyalgia and chronic fatigue syndrome -- their doctors treat them so poorly that appointments put them through an emotional wringer. So much for "do no harm," eh?

The harm these doctor inflict on us goes farther than just ruining our day or possibly causing a symptom flare-up. According to one prominent ME/CFS researcher, it may actually lead to another medical condition. I want to thank one of my fellow bloggers and twitter friend, username ME/CFS Unite, for bringing this quote to my attention:

"I've had patients who met post-traumatic stress disorder criteria . . . where their trauma was their interaction with their physician around this illness. They came to a doctor with Chronic Fatigue Syndrome; they left the doctor with PTSD." - Nancy Klimas, M.D., Miami Herald, March 24, 2009

That's pretty profound, to have one doctor accusing her colleagues of causing a seriously illness in their already debilitated patients.

  • Learn more about PTSD (post-traumatic stress disorder)

As I've said before, I'm incredibly lucky to have somehow found doctor after doctor who accepts my FMS diagnosis fully and, no matter the specialty, understands that I have special considerations. I wish everyone could have that same experience, but I know that it's the exception to the rule.

It's easy to say that someone whose doctor is causing them harm should find someone else; it's much harder to actually find someone better. We have a critical shortage of doctors who believe in our conditions and have any idea how to treat them. We face limitations due to our insurance companies or where we live. And when these guys are actually nasty enough to cause PTSD in a patient, it's hard to imagine they'd be accepting of our attempts to re-educate them.

Whether you're stuck with a jerk or you move on to another doctor, worse for wear, you shouldn't just accept this kind of treatment. All doctors have to report to someone -- your state licenses doctors, and you can make a complaint to the registration board. Doctors are overseen by organizations, such as the American Medical Association (AMA) and/or associations for their specialty, and you can make complaints to them. Also, unless your doctor is in private practice, he or she has an administrator to answer to.

The AMA has links to help you figure out how to complain about your doctor:

Do you feel your doctor has cause PTSD or other emotional trauma in you? How have you dealt with the doctor, and with the resulting health problems? Take the poll, and share your experience below!

Learn more or join the conversation!

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Comments
October 15, 2009 at 3:58 pm
(1) Jenny says:

I don’t have PTSD but have seen over 14 doctors over the last three and a half years, and at least 3 of them have had me leaving in tears. I have heard of so many horrible stories, and have had friends report their doctors.

While I don’t suffer from the disorder, It certainly has confused my understanding of the illness… and the validity, and MY trust in doctors and in myself. I work out these issues with a cognitive therapist, who helps greatly.

October 15, 2009 at 4:36 pm
(2) Taliba says:

Good on that doctor for naming this issue. I am slowly recovering from PTSD, which I know was induced by not just my physician(s) treatment of me, but also by abandonment by friends and family, as well as their determination to label me with a mental illness. Little did they know they were the ones causing it … I suspect that those who are traumatized may have being ‘labelled’ as mentally ill in common, because it completely destroys your life and reputation.

Of all the indignities that I’ve faced since I began suffering from CFS/ME nearly 20 years, having my identity and dignity assaulted by slanderous claims has done me the most harm, and given me what I consider to be an injury rather than an illness.

Kudos for raising this – I still have it at the back of my mind to hold those accountable who are responsible for the psychic damage that was done.

October 16, 2009 at 7:43 am
(3) Gig says:

After seeing only 3 other gp docs for my fibro (and regular gp needs) the fourth one accepted the rheumatologists dx of fibro without question and has always treated me with respect in light of my fibro and as an equal “person” in general. I commented on this to him one time when I was in the hospital and he said its because he never knows if maybe the next time it’ll be him laying in that hospital bed, hoping that his doctor listens to him.

October 16, 2009 at 10:49 am
(4) SBG says:

Educating the public about PTSD.
Visit often.
http://www.freezeframe4vts.org

October 16, 2009 at 12:37 pm
(5) Verna Linehan says:

I am 62 years ols and have had chronic pain for the last 20 yrs. I have had some physicians who have treated me like an idiot. My last dr. said that if the drugs he was giving me was not enough, I must be an addict. I am so tired of this type of treatment. All I want to do is function for what time I have left. Too much to ask. DEA says it is.

October 16, 2009 at 6:02 pm
(6) karen says:

One doctor followed me out of the examining room into the hallway shouting ”you need to see a psychiatrist”! I went to his psychiatrist and was put on lithium, UNMONITORED! I finally insisted on a blood test, and quit taking the drug.but that sample got ‘lost’. It as as though lava was shooting through my weins when I was startled A horrible experience.
Another Doctor yelled ”Sit up straight and grabbed me with two hands around the neck and pulled me up straight, ranting about ”they used to have racks in the cellar to do this” God, it has been a hard road.

October 16, 2009 at 6:51 pm
(7) greybeh says:

Oh, “kudos” isn’t the word.

I nearly committed suicide because doctors turned their backs on me before I got my diagnosis. I was so tired that I was near collapse many days and was just WAITING to faint so that someone would finally help me. I thought I had early-onset Alzheimer’s (at 27 yrs. old)…

… and what doctors saw when they looked at me was someone IN PAIN — not depression!!! Yet, they called it depression. I had one doctor who said to me in a terribly harsh tone of voice, “Are you done with your LITTLE LIST?!?” (the piece of paper I brought in because of my memory problems). She snapped at me through the whole appointment because I didn’t want to take anti-depressants. I thought no doctor would ever believe me.

Do you think we have stigmas? People who are depressed and anxious are stigmatized by their doctors who can’t see past depression and identify real, physical symptoms!

I had a doctor who let me try one NSAID and then when it tore up my stomach, told me all NSAIDs were the same. Then, the told me I was depressed, and when I wouldn’t take anti-depressants, told me I “wasn’t his patient” and told me to see another doctor.

I *BECAME* depressed after being in so much pain and being treated so poorly by doctors. I actually have called it “Doctor-assisted depression.”

The other day, I saw the pain scale that uses facial expression to measure pain… Guess what the person in a lot of pain looks like?!? Someone who is DEPRESSED!

I had a doctor who kept telling me I was LUCKY he would even treat me for fibro, that I’d be LUCKY to find anyone else! He told me to see a therapist and gave me names of psychologists who treated children, and did marriage counseling, and who weren’t seeing new patients. So, I found my own therapist who specialized in chronic illness. He didn’t get a copy of the report she sent, and I was complaining of sleep problems so he said, “You’re depressed, just admit it!” He told me to tell my therapist she was doing a terrible job. I insisted I had trouble waking in the morning because 30mg of flexeril and 50mg of trazadone was giving me “hangover fatigue” and that I wasn’t depressed.

I told my therapist he said she was doing a terrible job and that he told me to get a new therapist. She called him to talk to him about the report she sent (that he said he didn’t get). He wouldn’t let her get a word in and told her that if I just admitted I was depressed, I’d have an epiphany and start getting better.

At the next appointment, he accused me of being manipulative for having my therapist call him and told me how busy he was with patients that day. I told him that she had offered to call, etc.

He was trying to bully me into taking anti-depressants (FOR DEPRESSION, not sleep). He was limiting my fibromyalgia medication options (Lyrica, trying a different muscle relaxant).

A few weeks ago, I stopped seeing my therapist and the last thing she said to me was, “It was really good for you that you stopped seeing that doctor.”

It’s been “safe” to admit that I get some depression due to worsening symptoms that cause me physical and social limitations. I have to tell you, though, that if I was treated professionally to begin with, I wouldn’t have spent so long talking to the therapist about my fears about doctors. I would have gotten on my feet quicker. I would have learned more quickly about how to take care of myself by pacing and resting, and sleep hygiene. I would have felt less like a doctor could pull the rug right out from under me.

That fear I had… the doctor walking into the room and saying, “You’re depressed! Admit it! You’re *JUST* depressed” — it plays over in my head! I do relaxation exercises in the exam room before the doctor comes in!

Doctors can set the pace for your adjustment to a chronic illness. They can set you back or move you along.

I had a doctor write in my chart that I had fibromyalgia and then not tell me. He sent a letter to my PCP who was the one who insisted I was depressed and made comments about my “little list.”

March 5, 2011 at 5:44 pm
(8) Lyn says:

I’ve had FM since the early 80′s, & have run the gamut of doctors – FOR SURE ! I’d done considerable research on what might be wrong with me, coming up with the fibro possibility. I had been seeing a VERY good chiropractor, & I asked him if it was a possibility. He did the tender points test, & said a definite YES to it. I then went back to my GP (we’re in Canada) & told him about it, & he said “Oh, I don’t believe in Fibromyalgia”. In those days, we lived in a small town, but I was able to get another doctor (who had good reports in the community), & after a few visits, said: “I don’t believe you’re sick because you’re depressed, but depressed because you’re sick !”

October 16, 2009 at 7:17 pm
(9) mary says:

I am very happy that you have written about this behavior with Dr’s.I have been treated badly,because of pain meds.My husband also takes opiods for his pain,we were going to the same Dr.Because my husband has ostioarthritis and I have Fibro,this Dr. made me sign a cpntract,lectured me about taking pain meds,making me feel like an addict and I was so imbarrassed in front of his medical asst.but never did my husband have to sign anything and gives him 3 refills at a time.Everything this Dr.said to me was lose weight,treated me so rudely that I went to another Dr.I would get so upset,it was terrible emotional abuse.He did not believe Fibromalgia is a true illness.I have had this happen before,I am not an addict,but need pain meds to keep me living a more productive life.I have had this from childhood and it really is discouraging when people ignore or do not accept this illness.

October 16, 2009 at 9:45 pm
(10) charley says:

The docs that have made me feel traumtized (?) were the “prostitutes” hired by long-term disability and Social Security. It took me almost 13 years to get SSDI approved! After returning from Mayo Clinic in1996 I tried to switch to an MD closer to my house, who did treat a number of people frm the support group. When I made the appointment I clearly stated my diagnosis CFIDS and FMS. They gladly scheduled an office. At the visit the MD did his exam THEN told me he was not taking any more CFIDS?FMS pts because they took up too much time!

Once SSDI approved I again called around to find an MD closer to me who treated CFIDS/FMS. He gladly did the one time a year annual check-up and billed Medicare. At second vidit he said I really don’t treat CFIDS?FMS!

IF ONLY I had the energy to fight perhaps I could feel a little vindicated. I have learned I cannot waste what little energy I have fighting them. I try to move on.

I had not heard of Dr Kilmas stmt re PTSD before but that is what SSDI and LTD agencies did to me. I still shudder, if not have a mild anxiety reaction, anytime I receive correspondence from either of these agencies!

I am lucky to have a FP who knows more than the average MD about these illnesses, he has FMS. I continue to see him 2-4 times year and occ phone call for minor issues.

Thanks Adrienne for keeping up well informed.

October 19, 2009 at 6:10 am
(11) Elaine says:

I’ve had the same talks with family and friends about past doctors, who don’t know the difference between a dysphoric mood and a depressed one. My personal belief is, that since they are inept when it comes to treating fibromyalgia and similar health problems, they choose to give those patients mental illness labels. It’s not a new thing–asthmatics used to be considered mentally ill, as well as persons with many other health problems that docs didn’t understand or know how to “treat”. I can’t tell you how many times I’ve prayed that God give the doctors who have mistreated me, more than a few days in my shoes. (I’d rather they wise up, get educated and show some empathy.) I’m glad to hear of others who aren’t standing for it anymore. Stay strong!

October 19, 2009 at 7:46 pm
(12) MyFibroHelp says:

Many times it is the almighty dollar behind the uncaring doctor. Fibromyalgia patients take a lot of time and many doctors don’t feel they can take that time to spend with fibromyalgia patients, still meet their overhead and make a profit.

Don’t get me wrong. If a person, fibromyalgia or not, goes to the doctor, they deserve the best treatment that doctor can give. If the doctor doesn’t believe the patient, there are nice ways of refering the patient to the doctor that patient should be seeing. No doctor should EVER treat a patient the way many fibromyalgia patients say their doctor has treated them.

I am a doctor of chiropractic and, when I was practicing, I specialized in fibromyalgia patients so I’ve heard it all. When patients told me I was the only one who ever listened to them, it broke my heart because any doctor they go to should listen. Unfortunately, I was hit by a car and stopped practicing. Now, I focus on helping fibromyalgia sufferers not suffer any more through an online program.

Hang in there. The best advice I can give you, if you’re able to do it, is to interview your doctor before they even treat you. Schedule a consultation with the doctor and ask them everything you want answered about the fact that you have fibromyalgia and how will they treat you. You may be charged for the consultation, but if it saves you the hurt and humiliation some of the doctors out there provide, it’ll be well worth it. If, after your consultation, you decide this doctor isn’t for you, move on to the next one. Empower yourself; you’re worth it!

October 20, 2009 at 9:35 pm
(13) Barb says:

I live in Canada and was diagnosed with FM and CFS, as well as Myofascial Pain Syndrome in 2005. It always shocks me when I read stories like these where doctors in the US treat people so badly with regard to these conditions. It’s absolutely appalling. I feel very blessed to have been treated well by all of my doctors and I’m sure it’s had a lot to do with my continuing recovery. If I ran the world I’d fire and replace those nasty doctors before they knew what hit them. All I can say is don’t give up, do as much research on your condition(s) as you can, and keep looking for the right doctors!

October 24, 2009 at 9:05 pm
(14) Susan says:

I haven’t had problems with doctors—in fact, they’ve been very supportive and puzzled and frustrated. When I got sick (very acute onset with fever of 102 and blood work positive for mono which I’d had 7 years earlier and it had resolved), I was working as a therapist in a private psychiatry practice. I kept wishing I had clinical depression, saying that surely I had a very bad major depression, and the psychiatrists got pissed off and said, “if you need psychological treatment, it’s to deal with the denial that something is badly wrong with your immune system.” It was then that I got to a major medical center and was immediately diagnosed.
The PTSD issue, to me, comes more from the CDC which has misappropirated funding for CFS research, who didn’t give a flip about it from the get-go, and really, the gov’t hasn’t given it a lot of credence. NIH surely hasn’t. So, I think many of the doctors have done well (some have done horribly, I know) but the ones I know have done well considering the behavior and very poor research coming out of the CDC and NIH.
One doctor I saw (and this was during a move) said he wasn’t sure if CFS was “real”—I said, that’s fine and handed him my med records, including labwork, etc. I said, “I’d like to know what my diagnosis is from you then.” He blurted out, “Something is wrong with your immune system.” I said, “Agreed. And since we don’t know what is causing it at the present, is there a problem going with the CFS diagnosis or do you want to use another?” Went with CFS but adds others too which is actually helpful for insurance, etc. in terms of codes that fit the medical problems I have. Adds, for instance, Postural Orthostatic Tachycardia Syndrome, a GI infection that crops up every 3 to 4 months that is treated properly but only returns, and so on.

November 5, 2009 at 10:35 pm
(15) Word Girl says:

Just wondering, dear Therapist Susan, do you know of any validity connecting these syndromes to physical and/or emotional abuse?

An internist I knew felt that he “knew” there was something behind these medical manifestations. While I respect him well, and know he is not trying to subvert his patients’ progress, I’d like to know if there is any literature to the same effect.

November 6, 2009 at 2:29 pm
(16) Lesliesjoy says:

I am so happy and heartbroken to have read some of your stories, as I, myself, have suffered the same abuse from doctors treating me as if I was just drug seeking or mentally ill. I have had FMS for almost 5 years and have wished for death on many occassions because of the unrelenting pain, chronic sleep disturbance, and depression. Thankfully, I have children, so that’s is not an option for me, even though I find that in and of itself very depressing. No way out. My GP actually diagnosed me with FMS but insisted that she had arthritis and if she could make it, then so could I. She would not give the time to explain my symptoms to her without getting annoyed and sending me on my way. I cried so many times. She finally referred me to a rheumatologist. I was initially thrilled until I saw him. I was his last appt for the day and he was off on vacation for two weeks. He was rude and abrupt. He ordered xrays to rule out other maladies, which was good, but when I got to the xray place, he had not written the orders correctly, so they wouldn’t do the xrays that I needed. When I called, the nurses just blew me off and said I must not know what I was talking about. But I knew exactly. When the Dr. finally got back in town, I went to my follow up appt. He quickly stated that there was nothing he could do for me and he would refer me to a pain Dr. It took a month for them to get my record over the the pain clinic. Once again, I kept calling them and they told me I must not know what I was talking about. When I finally did get to see the pain clinic Dr., he has been very understanding of what I’ve been through, although I did have to sign the “drug addict agreement,” which was not a problem. I was just so ready to try anything to get better. Talk about desperation. He has a PT and BFC on staff and they have both been wonderful to me. They are both recovering FMS patients themselves, so I KNOW that helps!! I am still knew to the program and I am still struggling every day to maintain some semblance of normalcy, but I thank God, so far, that I have found these wonderful people to help me. It is quite a far drive, which is difficult because I also suffer from Panic Disorder and driving makes me extremely anxious. I use to say “take it one day at a time.” I know say, “one second at a time.” Thanks for letting me share. Best wishes to you all in finding the right Dr’s.

November 12, 2009 at 2:36 am
(17) Donna says:

I’ve heard or read something to the effect that fibromyalgia is now being considered as a neurological disorder. I’ve been having trouble finding any reliable information that would support that. But, to go along with the topic of Adrienne’s blog entry, I have to say that I saw a neurologist this morning and a left his clinic feeling like I’d been abused. He had me do this walking test, first walking on my heels, then walking on my toes, then walking one foot directly in front of the other heel to toe. I couldn’t do any of them without losing my balance and he didn’t want me to hold on to the wall. He said that the reason I couldn’t do the tests was because I’m not physically fit. That is a new one on me.

February 5, 2010 at 11:50 am
(18) cherry says:

I have just had a horrible experience with a consultant neurologist who when he wrote up the report for my consultation practically accused me of lying about being in pain and tht old chestnut tried to suggest that i am depressed. He also laughed out loud when i stated that my body was racked in pain. Needless to say I am going to write the mother of all complaint letters to his superiors. I will keep you all posted. Stay strong everyone.

October 16, 2010 at 11:59 pm
(19) Gracie says:

I’ve been insulted by some of the finest doctors in the country. My favorite was a New Yorker, who, after examining me and reviewing the labs I’d brought in, said, “Honey, we’re all tired.”

March 4, 2011 at 1:53 pm
(20) Eva says:

Sometimes it helps for us to know that far too many doctors have been trained to believe that chronic pain and/or fibromyalgia is just psychological. And they are NOT psychologists, they don’t know what to think or do. I thank God the latest research is pointing more and more in the direction that we have a disease of the central nervous system that deserves medical treatment and understanding for that. It’s the fault of the entire system, not us – not even them entirely, that they treat us poorly sometimes. Find a doc who keeps up with research when this kind of thing happens – and keep up with it yourself. It’s frustrating how little they know oftentimes but no use to get caught up in blame of ourselves or them.

June 18, 2011 at 10:45 am
(21) Donna says:

I will not see a doctor by myself and if that person cannot go on the day of appointment, I cry because I am afriad if being yelled at again by a doctor or staff, so I cancel. I have had to prove that I have Fibro and crohn’s. Recently I had to have surgery. Went in for bloodwork and to talk with the anetesea person. He asks ????’s and when I answer he would say I do not believe you, then he told me of about ten ways you can die in surgery. I called my sister and told I was not going to have surgery. Ther is no way that I can let him put me under knowing he held hatered toward me. Well she made them replace him with another. It all started in 2008 when a doctor and his team mocked me and accused me of making up things that I had listed. I wnet home and cried for two weeks. Stayed home for over three years, only leaving my apartment to buy grocries. And go see another doctor just to have them abuse me to. When I ask to see my medical records, they want to know why I want to see them, I tell them that I am tired of being yelled at and I want to know wht is in them, so I can defend myself. Then I get yelled at agan. When I do get them they only give me copies of the paper you check out with. Do I have PTSD? YES!

October 14, 2011 at 4:01 pm
(22) Rhona says:

I have stumbled upon this site and find myself in tears. For 15 years I have suffered from what I now believe to be PTSD and Chronic Fatigue Syndrome… I don’t know which one came first. I had thought CFS but now I’m not sure……. I saw so many doctors, psychologists, CPNS, homeopaths,etc. etc. They all said I was depressed!! one said “all your aches and pains are very vague,”
I had to make an insurance claim and was sent to 2 doctors and had one visit me at home. They all agreed I was depressed. My GP denied any mention of ME but “perhaps some form of CFS”
15 years later I still have flashbacks although I can deal with them better now, am still on anti depressants and still have CFS symptoms. I now avoid GP’s/doctors as much as possible, and just try to get on with my life the best I can

December 17, 2011 at 9:42 pm
(23) Joanne Ford says:

Hi All

I have Fibromyalgia and PTSD and I am doing exceeding well due to the information and support I have been given free of charge at http://health.groups.yahoo.com/group/fibromyalgiacured/. My pain and symptoms are all now down to between 1 and 3 out of 10 and they are on most days only 1. I am on no medication. Please come, this is a genuine site run by everyday people, no professionals who are fully committed to sharing all the information we have that has enabled us to get so well

Thanks for reading

Love Joanne

January 27, 2012 at 1:47 pm
(24) louisa says:

I was hurt at work and sought help at an occupational medical center, thinking they would know what was up with the pain i had been experiencing. Important to know that I was sixteen, in my first job, and was predated upon by a pedaphile who locked me in the store at night and abused me sexually with every item he could including his own penis. I was then emotionally abused by a female boss who said “I have no qualms or complaints about the quantity or quality of your work, but you drive me crazy and everyone hates you” When I was at the occupational doctors, I had an “occupational gyno” who wanted to examine me in the presence of eight other male doctors; thank God i had the strength to tell them all to F### off and get the hell out of the exam room so I could get dressed and leave. PTSD, yes, and they WERE TRYING TO TRAUMATIZE ME AGAIN so that i would leave and run away with my tail between my legs. Thankfully, after a few years, i got an attorney who recommended drs. who were caring professionals and had empathy. Some doctors need to be patients in a hospital bed for two weeks, having the same things said and done to them that they themselves have put their patients through, and some just need to find another profession. Run when you see a doctor that treats you poorly!

April 18, 2012 at 6:58 pm
(25) R says:

Hi, I’m a 35 year old female with lupus,celiacs disease and fms, all diagnosed by my primary doctor and rhuematologist, any way my regular doctor moved out of state and I had to see a new doctor who moved the following year so on to the third doctor I went who proceeded to treat me like I was just depressed and addicted to drugs, I fired that dr and went to two more over the next 3 years who treated me the same, so I quit seeing any kind of doctor even for my lupus. The last time I went to the dr was 6 months ago and I refuse to go back, needless to say my lupus is flaring more and more and getting worse each time. The only thing I do about it is take some ibprophen and Tylenol and stay in bed for days until the lupus flare levels out.

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May 24, 2012 at 4:35 pm
(28) Christine says:

For those of you in severe pain (I was there), just a suggestion (I am not a doctor nor trained medically, just discovered this by accident). I started using natural progesterone cream, you can buy it at health food stores or on line. I was using it to see if it would help with hot flashes, and within 7 days of using it my 12 years of chronic pain ceased. 4 months later I am about 95% pain free (I have 2 bulging discs so that is a 5% pain in my back). I am no longer disabled. My blood test levels of progesterone were always “in range”, so don’t rely on a blood test or a doctor to prescribe it (they won’t, because it is a natural product that the drug companies cannot patent and make large money on). Progesterone has been used for decades by people with arthritis, particularly RA. It is never advertised. It may or may not work for you, but do the on line research and try it. I just bought a house and am moving myself because I can.

February 27, 2014 at 10:29 am
(29) CFS Facts says:

A woman who has been ill with CFS for years but without a diagnosis, even after she is diagnosed, is very vulnerable and this attracts doctors who need to control and blame the patient, who need this type of power for their egos.

Greenhalgh, S (2001). Under the medical gaze: facts and fictions of chronic pain. Berkeley: University of California Press.

Publishers Weekly says “The author speculates at length about the role her female identity played in her willingness to accept the forceful and ultimately wrong advice of a male physician”.

Library Journal observes that the book “convincingly exposes the limitations of the medical profession’s “scientific” approach to illness. … while physicians do not intend to deceive patients or cause harm, their use of the language and trappings of science can cause them and their patients to be blind to the possibility of personal biases and medical errors. She also draws on feminist psychology, theorizing that male physicians often dismiss the concerns of their female patients and that female patients do not advocate for themselves as they should, reverting instead to the societal expectation of trying to please a man by being “a good patient.”"

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