Pat Fero, one of our Gold Star mothers who lost a child, observes about Ryan’s case:
"Interesting that the mom has stacks of medical letters and records, some of which she scanned for me, that tell Ryan's story. It is unbelievable, really, but I have seen the proof. YES, I know that things can be bad, but I also think after talking to the NC advocate that the GOOD OLE BOYS idea is alive and well in this county in NC. The family lives just down the road from Lapp and Cheney, with Cheney's office in the same office park as many of the MD's she has been dealing with. AND the CFIDS assn is in charlotte. I would bet that the family's experience is backlash...., We have that at the UW - Madison. It is as if the medical people have a bone and will not let go. In fact, the bone grows - an anti CFS sentiment. WHY? Just because? I think it is the CDC and NIH foibles later on messed with us in the trenches. Idiots."
There has recently been a discussion in support group about CFS patients’ ability to trust doctors. We’ve been lied to, subjected to verbal abuse, accused of lying, and refused treatment that would automatically be given to someone with a different diagnosis.
Someone did a research study into placebos and CFS. The placebos didn’t work. There wasn’t even the usual percentage of "placebo effect". On one level, this proves that CFS is not psychosomatic, there’s a biological cause that can’t be fixed with sugar pills. On another level, it raises the question of why there wasn’t the typical placebo effect; talk to the patients and they’ll tell you: we’ve lost faith in doctors. We have been given so many pills that didn’t work as well as the doctor said they would, that we no longer believe anything they tell us. Quite simply, when we’re given yet another pill with yet another hyped-up assurance that "this will help you", we expect to be disappointed. The placebo effect relies on the patient believing the assurance that this is the magic pill; CFS patients have stopped believing what they’re told.
And the medical community has brought this on themselves with the way they have been treating CFS patients for over two decades. They lie to us and wonder why we no longer believe them. They try to convince us that it’s all in our heads and will go away if we just go back to work or exercise or take their pills, and then they won’t believe us when we tell them that work/exercise/pills made us even sicker.
One of the original 1984 patient cohort observed:
"Even if you were miraculously cured tomorrow, how could you ever erase your knowledge of the incredible things you have learned about the routine lapses in logic performed by humans who are confronted with an unfamiliar situation that requires a modicum of reasoning ability? You can never look at people quite the same, after this."
A British activist, the healthy mother of a CFS patient, concurs:
"the rank irrationality I have encountered from medics, let alone other health professionals and the community at large (with a very few honourable exceptions), has knocked me for six on a regular basis. I feel like I'm frequently staring into the abyss of chaos when it comes to doctors' belief systems on this bunch of illnesses!"
A nurse who is now a CFS patient warns:
"I don't think a patient should ever depend on a doctor to take care of them. Sad but true. It is the patient's responsibility to research and be prepared. I would much rather research & be prepared than my family be rich because of a lawsuit. Incidentally, I am/was a RN."
The simple fact is, if your diagnosis is CFS, you can expect to be disbelieved and treated badly (if the doctors give you any treatment at all).
Dr. Kevin P. White observes that "There are many well accepted disorders that lack objective physical findings." It’s not that symptoms of CFS/fibromyalgia are subjective, because "all symptoms are, by definition, subjective." Similarly, all symptoms are self-reported; my father didn’t have to have diarrhea in front of the oncologist to convince him that this was his reason for suspecting there was a problem – he was simply believed at face value. But when I reported diarrhea every morning before consuming anything that might cause such an allergic reaction, the attitude was that if the doctor didn’t see it for himself, I was lying because I didn’t want to work. He even ignored the objective symptoms, because he didn’t want to see any proof of illness.
The first doctor I saw, in 1987, convinced my husband that he didn’t see the things he thought he saw; we walked in with my husband substantiating my reported objective symptoms, and walked out with him convinced that I was imagining things, because the doctor did such a good sales pitch on the notion that there was absolutely nothing wrong with me, and that he could not trust his own eyes and ears. My boss was not as awed by doctors, and kept insisting that there was something very wrong and I had to keep after the doctor until he saw what my boss saw; the doctor refused to see any of the things that were readily apparent to other people.
One of my doctors stated "nothing she said made sense." And that’s true – he was trying to fit my symptoms into the matrix of lifelong depression, and my symptoms refused to be sledgehammered into the compartments he wanted them to fit into. They didn’t make sense in the context of depression. Had he known more about CFS, he would have recognized that everything I said made perfect sense – I was describing all those symptoms that would support a CFS diagnosis instead of a depression diagnosis, because I knew how the two are differentiated and what to say to get a doctor to make the distinction. But instead of researching what symptoms I should have, after being told that I had a specialist diagnosis of CFS, he convinced himself that he was right and I was wrong, and all my previous doctors who made the CFS diagnosis were wrong, and all the psychs who said I lacked the required components for depression were wrong. I was simply confused, and my reports could not be trusted, because I refused to describe the disease he was looking for.
Yet, when I describe the same symptoms in the same way to a CFS expert, he’ll recognize instantly that I was correctly diagnosed with CFS in 1988, a dozen years before that doctor chose to ignore the expert diagnosis and substitute his own erroneous one.
Pat Fero comments "when my son, at age 10 was horribly ill, we took him to the University of Wisconsin Medical Center - Pediatric diagnostic clinic. The end result? I have it in writing....Casey is mimicking his mothers CFS behaviors.......
"I took him back once and as I was leaving the exam area of this large wing, I heard laughter. I had to go by the room. Someone said,"When I heard her say Chronic fatigue syndrome..." Then more laughter from a group of MD's. I stood there with my little boy. Did he hear? Should I go in and rip someone up?
"But no, for the sake of the child, I left. My husband took Casey the third time. The MD was a different guy and a bit better, but they thought Casey was overweight and needed to be on a regular sleep schedule. THIS after a sleep disorder from age...hum...4 or 5 on? I mean who wants a child wandering around in the middle of the night or coming into a bedroom to say....mom I can't sleep...
"So we were done with the big medical center and that was the treatment of kids when Casey was young. He once told me,"She (an MD) did not have the right to tell me what to think and how to feel." THAT MD was a real idiot and my son knew it, but could not process it until a few days later.
"MDs can damage a kid's self esteem."
Actually, they can damage the self esteem of any CFS patient. But when we turn it back on them and say "I’m not going to believe you", "what you say doesn’t make sense", "I’ll believe this pill will work when I see it with my own eyes", they get insulted.
But, observes the nurse/patient quoted above, "if this hurts your feelings, you are being overly sensitive, hormonal, have a anxiety disorder, or blah, blah, blah. Anything except the right to be honestly affronted at this type of treatment." And she’s right. When my sturdy self esteem caused me to tell the doctor he was mistaken, I was not going to be bullied into questioning my observations the way my husband was cowed into distrusting his own eyes, the doctor took revenge. How dare I not knuckle under and accept that just a few minutes after meeting me, he knew me better than I knew myself.
A psychiatrist experienced in treating battered women says that when a batterer tells the victim not to believe what she sees, she doesn’t feel what she feels, that’s emotional abuse. The same abuse is inflicted on CFS patients every day, as they are told that they don’t see the symptoms they see, they don’t feel the pain they feel, just believe the doctor that there’s nothing wrong.
Perhaps some day there will be laws that allow doctors to be charged with a crime for this emotional abuse of the disabled.
Patients, you don’t have to put up with it. If a doctor tries to tell you that you’re not really sick, just lazy or crazy or manipulative or whiny, do not listen to him. Gather up every bit of your self confidence and tell him that the one who is manipulative is him, trying to get you to ignore what you know you see and feel. Then walk out of his office and never return.
Like Pat, I have the proof in writing of how what was in the handwritten notes taken during the appointment or written on forms was twisted around to say something very different when the doctor was dictating the typed notes. I have the proof in writing that doctors lied to disability investigators. Unbelievable, but I have the proof that it’s true, and that proof is available to anyone who chooses not to believe me that my records were doctored more than I was.
And I have the written proof of how a member of the medical community, like a dog with a bone, will not let go of the fact that I speak honestly about medical malpractice where CFS patients are concerned; I've been cyberstalked and verbally abused (including in comments to this blog) for exposing that dirty little secret. Her concern is protecting doctors; my concern is protecting patients. I will live the rest of my life with problems caused by doctors who wanted me to believe that I was not sick, just depressed and lazy, and ignored all evidence to the contrary.
Unlike most women that they're used to dealing with, I was a successful, accomplished professional, and not easily manipulated. They didn't like that I stood up to them. But my concern was not massaging their egos ... it was, and remains, getting well enough to go back to work full-time. If that means I have to tell doctors they're wrong, so be it. It's time they got a taste of their own medicine.