When People Say Trust Your Doctor, I Say Trust Your Experience

February 26, 2020

Photo: Charles J. Sharp https://creativecommons.org/licenses/by-sa/3.0

I was about 20 when a physician told me my pain was all in my head and that I just needed to reduce stress. I quit my college job and dropped a class . . . then had a painful attack.

It was decided I would have my gallbladder removed. This didn’t feel right to me, so I asked if the surgeon could look around while I was under to make sure. It was my appendix. I had to advocate for myself.

I was about 22 when a nurse dismissed me because I looked okay. Later, I went to the ER, so sick I couldn’t remember my address. The doctor sternly replied, “What do you want me to do about it? So, you have the flu.” I had to advocate for myself. A chest x-ray showed double pneumonia. I took months to recover.

I was 17 when I began a medication that caused insomnia. Doctors couldn’t figure it out. I stopped the medication eight years later and was able to sleep again. I had to figure it out on my own.

I was about 34 when a doctor told me I was having difficulty breathing because I thought about breathing too much. “‘It’s all in your head, you silly little woman.” Sound familiar?

I went to the chiropractor the next day. He gave me an adjustment, and I breathed deeply. My rib wasn’t in alignment.

I was 31 when my son’s pediatrician was baffled and said, “I don’t know. I feel ignorant about this.” (He was honest.) We advocated for our son, finding a physician who could diagnose and treat him.

Now, I’m 41, and see people say, “Trust the experts. You aren’t qualified to read studies. Where did you get your degree? Google?”

My point isn’t that physicians are bad. They are human. They make mistakes in a high-pressure field.

My point is this: You have every right to advocate for your health and the health of your children. Not being an “expert” does not invalidate your experience.

Read the studies. Read the medical literature. Voice your experience. If it doesn’t feel right, have courage to say so. Your voice matters.

~ Honeybee

Honeybee and her husband of 17 years have two children. Since her son’s recovery from PANDAS/PANS, Honeybee’s passion is walking other parents through the diagnosis so their children will have the same opportunity to heal that her son had.

For more by Honeybee, click here

 

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25 Responses to When People Say Trust Your Doctor, I Say Trust Your Experience

  1. mhl22 says:

    ‘And most of them are in conflict to the patient’s “best interests” ‘

    More medical bashing. Gad, don’t you have anything better to do? Who do you rely on when you have a serious health problem? A chiropractor? A naturopath? The internet? I understand a lot of people on this site, and elsewhere, feel that the medical profession is responsible for whatever injuries their child(ren) may have experienced, but no one is in the healing profession to hurt people (with a few egregious exceptions, unfortunately). If you really think that physicians have other motivations (ie. profit motive) for immunizations, testing, treatments, etc., then just talk to someone who actually knows, what small part of their practice is from those revenues. You might be amazed at the overhead involved. I know, presenting the facts isn’t going to change someone’s opinion, but you really need to focus on the important issues. How do you help someone who is sick or injured get better. That’s what health professionals do day in and day out.

    • ProfessorTMR says:

      Feeling defensive much? Where did I say *anyone* went into the medical profession “to hurt people”?

      I don’t even think people become PHARMACEUTICAL executives “to hurt people.” Does that mean that they don’t do so on a regular basis? Of course not. And the single biggest reason is that, as corporations, pharmaceutical companies’ number 1 priority is profit.

      The same is true for large hospital corporations, insurance companies, and physician practices. They have a “fiduciary obligation” to choose practices that will maximize profit. Do you REALLY think that does not create inherent conflicts of interest? I have talked to many physicians (who have the highest rate of suicide in the country, by the way) and read countless articles that make it crystal clear that it DOES affect the way they practice–and not in a good way. The ones who cannot find a way to resolve that conflict are those most prone to burnout and suicide.

      Read The Atlantic article that Redpill posted from 2014. It covers several firsthand accounts by doctors, Doctored: The Disillusionment of an American Physician, Being Mortal, What Doctors Feel, The Good Doctor: A Father, a Son, and the Evolution of Medical Ethics, The Doctor Crisis, and God’s Hotel. Like the author of the article, I don’t think doctors are inherently bad. Personally I think most of them went into their profession with some vague notions about helping people tinged with a bit of egotism. But I do think that most are practicing bad medicine on a daily basis today because our system is inherently broken. In other words, in addition to their patients, doctors are being chewed up and spit out by our current medical system.

      The medical system needs an overhaul, and probably the most important element in the coming revolution is doctors who refuse to continue with “business as usual” and refuse to participate in the broken system any longer. These doctors do exist, and there are those who are doing their level best to help them revolutionize their field. James Maskell of The Evolution of Medicine is bringing together doctors who are focused on primary causes of illness and methods of bringing about resolution and healing who are forging their own way forward to a more satisfactory way of practicing medicine for both doctor and patient.

    • Redpill says:

      If you really think that physicians have other motivations (ie. profit motive) for immunizations, testing, treatments, etc., then just talk to someone who actually knows, what small part of their practice is from those revenues.

      Really? Read this. Drs are more motivated for profit than the uninformed consumer thinks or wants to think. This is from the state of Michigan from 2016. BC/BS continue to post this booklet online but has removed the immunization compensation from it. I wonder why? Fortunately someone captured it at this link as well as on the wayback Machine:
      http://www.whale.to/c/2016-BCN-BCBSM-Incentive-Program-Booklet.pdf

      HEALTH CARE OUTCOMES: PREVENTIVE HEALTH CHILDHOOD IMMUNIZATIONS –
      specifics: If a Dr or his/her practice maintains a 63% vaccination rate they will receive $400 per Combo 10 completed for each eligible member. Do the math yourself. Higher percentage-more money.

      How about BREAST CANCER SCREENING-the target is 80% in a practice and the payout is $100 per member.

      Doctors get money for just about everything they do. Remember a few years back pediatricians were kicking children whose parent refuse vaccination? It wasn’t because they kids were a threat it was because the kids were messing with their averages. Considering Peds are just about the lowest income makers of the MD’s they most likely put profit over children.

      “How do you help someone who is sick or injured get better. ”
      -Medical mistakes harm more than 1 in 10 patients, and half are preventable
      https://www.nbcnews.com/health/health-news/medical-mistakes-harm-more-1-10-patients-many-are-preventable-n1030996
      -Medical error—the third leading cause of death in the US
      https://www.bmj.com/content/353/bmj.i2139.full

      Is Your Doctor Getting Paid to Prescribe You Pain Relievers?
      https://www.healthline.com/health-news/is-your-doctor-getting-paid-to-prescribe-painkillers-for-you#The-drug-rep-is-in

      The Opioid Epidemic was pushed by Doctors who were handing it out like candy.

  2. Billie Rubin says:

    No, not a health professional. I can’t imagine a more frustrating opportunity for a health professional than trying to convince anyone on a site like this to change their mind. I am only trying to present the science, as I know it, so that others won’t suffer a fiscal and physical death, as did my aunt, at the hands of a charlatan chiropractor who drained her resources and hastened her death by convincing her that the bone pain she had could best be treated by manipulative therapy, worthless nostrums (from the friendly homeopathic practitioner who shared an office), and ultrasound instead of standard medical treatment for the multiple myeloma (bone marrow cancer) that ultimately caused her death.

    While I wish I had answers for both cause and treatment of autism, the therapies posited here, with few exceptions, offer false hope to desperate people.

    • ProfessorTMR says:

      I’m sorry that your aunt died from her cancer, but you know that standard treatment for advanced multiple myeloma is incredibly intensive, expensive, and painful, and there is no guarantee of survival even if she did go through all that. Hard as it may be to understand, many people simply choose not to go through such treatment and take their chances with something far less invasive.

      My own father was diagnosed with lung cancer, but it had metastasized from elsewhere. The doctors eventually decided he had pancreatic cancer and were talking about chemotherapy. There were lots of reasons he did not want chemotherapy: It would have drained my parents’ resources completely; it would have been quite painful and debilitating in and of itself; it was unlikely that it would prolong his life by more than a few years; and he was approaching the end of his term life insurance. The last thing he wanted was to last just long enough to leave my mother destitute. He planned a second opinion at Sloan Kettering and went home to be with my mother for the weekend. He died while he was at home for the weekend; and I know that’s the way he wanted it.

      I know there are chiropractors that are anything but ethical, but there are bad eggs in every field. I’m sorry if a truly bad one preyed upon your aunt.

      No one has answers for everyone with autism. All we can do is share the things that have helped (many of which, by the way, are medical treatments obtained from MDs). Whether or not you believe it, there are many people who have fully recovered using “the therapies posited here.” That’s not “false hope”; it’s simply hope, something that the mainstream has yet to offer at all.

    • Denise Mulloy says:

      I think the message is the same – be your own advocate for your health and wellness no matter where the “practioner” cones from. Thanks for taking the time to relate your story. It gave this message balance.

  3. Kathleen says:

    I believe the article above is not saying that physicians are wrong or bad, we just need to listen to our gut and ask more questions. If something seems out of whack to us, we need to speak up without blindly listening. Also, there are more ways of researching other than google, and we need to cover all the bases. I thought the article was well written and got the Authors point across that we all need to ask more questions and that we need to feel comfortable with the choices or we shouldnt make then, especially based on one opinion.

    • Redpill says:

      Yes, all physicians are not all bad but I have run across my share of arrogant ones who have a God complex.

      • mhl22 says:

        Yeah, some physicians (and others) have a g-d complex, but if what you do on a regular basis seems miraculous, well, it might be understandable. After all, if you were stuck on a desert island, who would you most want to have – a scholar, a lawyer, a physician, etc.? Each adds something to society, but only one group can make a difference in the quality (and quantity) of your life when it is necessary.

      • Redpill says:

        I’d rather have a scholar. On an island a Doctor would be lost without all his tools of the trade. Most Dr. haven’t picked up a medical book or engaged in higher education since they got their license because as some have stated in articles they don’t have the time to read whereas a scholar reads many many books, researches and stays up on current issues. On a island if I breakout in a rash the doctors first though would be there was no steroid cream to slather on whereas a scholar may have run across an herbal remedy in a book and know what plants to seek out to treat. Heck, I even know what herbal plants can help mitigate rashes, stomach aches, headaches-minor issues. I bet you a doctor wouldn’t. I’d probably be helping him/her. If it’s a major medical issue what could a doctor do? No more than a scholar or a lawyer.

        Yes, each adds to society but they also take from society as well.
        There are bad doctors, lawyers and even scholars so really what is your point?

        “but if what you do on a regular basis seems miraculous,”

        Doctors Tell All—and It’s Bad: https://www.theatlantic.com/magazine/archive/2014/11/doctors-tell-all-and-its-bad/380785/

        …So doctors are busy, busy, busy—which spells trouble. Jauhar cites a prominent doctor’s adage that “One cannot do anything in medicine well on the fly,” and Ofri agrees. Overseeing 40-some patients, “I was practicing substandard medicine, and I knew it,” she writes. Jauhar notes that many doctors, working at “hyperspeed,” are so uncertain that they call in specialists just to “cover their ass”—hardly a cost-saving strategy. Lacking the time to take thorough histories or apply diagnostic skills, they order tests not because they’ve carefully considered alternative approaches but to protect themselves from malpractice suits and their patients from the poor care they’re offering them. (And, of course, tests are often lucrative for hospitals.)

        …There is also a more perverse upshot: stressed doctors take their frustrations out directly on patients. “I realize that in many ways I have become the kind of doctor I never thought I’d be,” Jauhar writes: “impatient, occasionally indifferent, at times dismissive or paternalistic.”

        …Medicine today values intervention far more than it values care. Gawande writes that for a clinician, “nothing is more threatening to who you think you are than a patient with a problem you cannot solve.” The result is that all too often, “medicine fails the people it is supposed to help.” The old doctor-knows-best ethos was profoundly flawed. But it was rooted in an ethic of care for the whole person, perhaps because physicians, less pressed for time, knew their patients better.

  4. Billie Rubin says:

    Don’t go to a physician; if one gives you a diagnosis, it must be the opposite of what he/she tells you. Instead, rely on the internet, or a lesser trained provider such as a nurse practitioner, physician assistant, naturopath, homeopath, pharmacist, etc. It is absolutely amazing that you have made it so far.

    • ProfessorTMR says:

      I almost deleted this comment immediately, because mocking people who have different experiences than yours does not add in any positive way to serious discussion.

      Instead, I’m offering you a radical suggestion: STOP trying to impose YOUR viewpoint on the people who come here and just listen for a bit. In other words, TRY to put aside your “anchoring bias” for a little while.

      I know. I said it was radical.

      Try, for even a short while, to take in and UNDERSTAND what you are reading rather than mocking it. It just might make you a better healthcare provider, not to mention a better person.

      • Billie Rubin says:

        You are assuming I am a health care provider, rather than an informed consumer. My comment was a reference to the unfortunate woman who listened to voices on the internet, rather than health care providers who told her not to deliver her post-mature baby at home. Ultimately, she had a stillborn baby (and a lifetime of guilt, perhaps like you might have, Professor.

        And for those whose claim for their choice of treatment is, “I know my body”, remember, your physician read the textbooks.

      • ProfessorTMR says:

        I’m not assuming you are a healthcare provider, merely addressing the implication contained in some of your comments. If you’re not (and I note you don’t say you’re not), it’s even more odd that you would spend so much effort seeking to impose your views on the people who follow this website.

        Your comment was posted on THIS blog, so it shouldn’t be surprising that no one would know your comment “was a reference to the unfortunate [random] woman who listened to voices on the internet.”

        Did you actually READ this post, or any post on this website for the matter? ALL THESE PHYSICIANS “READ THE TEXTBOOKS” AND FAILED THEIR PATIENTS ANYWAY. Again, I suggest LISTENING to others’ experiences.

        By the way, I had a “post-mature baby” at home who died when he was less than two days old, so I probably understand what that woman (if she actually exists) feels on a deeper level than you can possibly imagine. In my case, I was “lucky”; an autopsy made it clear that having had my son in a hospital would not have saved his life. From talking to countless other parents who have lost infants and older children in every way possible, I learned that there are NO guarantees, period. For instance, my sister-in-law’s baby was stillborn even though she herself was ER nurse and it was her third scheduled C-section. I also learned that caring parents ALWAYS bear guilt for a child’s death no matter how irrational it may be. After all, it is a parent’s job to protect our children, and we do not want to believe that there are going to be times that is simply not possible. All we can do is use our experience and our intuition to make the best choices we can.

    • Mhl22 says:

      Try to say something positive about people who struggling with problems far greater than you can imagine.

    • Redpill says:

      Billie Rubin:
      “your physician read the textbooks.”

      This is a long thought out article.

      Doctors Tell All—and It’s Bad: https://www.theatlantic.com/magazine/archive/2014/11/doctors-tell-all-and-its-bad/380785/

      …So doctors are busy, busy, busy—which spells trouble. Jauhar cites a prominent doctor’s adage that “One cannot do anything in medicine well on the fly,” and Ofri agrees. Overseeing 40-some patients, “I was practicing substandard medicine, and I knew it,” she writes. Jauhar notes that many doctors, working at “hyperspeed,” are so uncertain that they call in specialists just to “cover their ass”—hardly a cost-saving strategy. Lacking the time to take thorough histories or apply diagnostic skills, they order tests not because they’ve carefully considered alternative approaches but to protect themselves from malpractice suits and their patients from the poor care they’re offering them. (And, of course, tests are often lucrative for hospitals.)

      …There is also a more perverse upshot: stressed doctors take their frustrations out directly on patients. “I realize that in many ways I have become the kind of doctor I never thought I’d be,” Jauhar writes: “impatient, occasionally indifferent, at times dismissive or paternalistic.”

      …Medicine today values intervention far more than it values care. Gawande writes that for a clinician, “nothing is more threatening to who you think you are than a patient with a problem you cannot solve.” The result is that all too often, “medicine fails the people it is supposed to help.” The old doctor-knows-best ethos was profoundly flawed. But it was rooted in an ethic of care for the whole person, perhaps because physicians, less pressed for time, knew their patients better.

      • ProfessorTMR says:

        Unfortunately, a majority of people I know have encountered the “impatient, occasionally indifferent, at times dismissive or paternalistic” attitudes in our doctors’ offices, especially when presenting with a complex chronic health problem. Is it any wonder that so many are no longer looking to them for healing?

      • ProfessorTMR says:

        Thanks for the excellent article. Very thoughtful essay.

      • Mhl22 says:

        There are roughly 1,000,000 physicians in the USA, and myriad mid-levels (nurse practitioners, physician assistants, CRNAs, midwives, etc.) as well as chiropractors,homeopaths, naturopaths, Christian Science practitioners, and others, providing health services. Even if the treatment rate was 99% accurate, that leaves a great deal of inaccurate results out there. Everyone in the healthcare field is being hounded by administrators, insurance companies, employers, etc. to do more with less. Grumpy? Sure, sometimes. Hurried? Too often. Mistakes? Undoubtedly.

        Be an informed consumer, ask questions, read about the issues and formulate your questions. Be skeptical. But don’t automatically assume that your medical provider has anything but your best interests at heart.

      • ProfessorTMR says:

        There is no question that the vast majority of medical providers have OTHER things “at heart” as well besides “your best interests.” Even if they want very much to provide excellent medical care to all their patients, all those other concerns are there and cannot be ignored. And most of them are in conflict to the patient’s “best interests.” The buyer should indeed beware.

  5. Nancy Paradise says:

    I, too, agree. After working at a hospital for ten years, I knew that one must cautiously evaluate a diagnosis.

  6. Mary Klukowski says:

    My experience too. I’ve had family members murdered by the ‘experts’. I tried to advocate and I was mocked and ridiculed into silence. When they tried to diagnose me with their lies, I changed my diet and recovered completely. I’m now blowing the whistle every time I ‘see something’, so our children and our grandchildren can fulfill their God-given destiny.

    • Billie Rubin says:

      I doubt anyone was “murdered” by experts. Someone may have died as a result of wrong treatment, medical misadventures (a legal term, not making light of what happened), but there are very few actual murders (there have been some, unfortunately), so using that word dilutes your argument to tabloid standard.

  7. Pasquariello SUSAN says:

    Thank you for your powerful article. Agree 100% – trust your experience …

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