International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
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Dealing with disbelieving doctor

Discussion in 'ME/CFS Doctors' started by lllamamom, Jan 26, 2018.

  1. lllamamom

    lllamamom

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    Okay, folks, I'm claiming a point for not throwing things. Called a doctor that had been recommended to me, as our health care got involuntarily changed the 1st of the year. Under "major complaint" I said CFS/ME, and immediately got told that it's bull****. That "Since that silly movie came out, everyone thinks they have it". When I cited statistics, and symptoms, I got told that "it's just fibro. Exercise more". He never asked what I had been doing for exercise (I live on a ranch--weight lifting used to be a 60 pound hay bale in each hand). Cleaning stalls was good cardio, by the time you got it cleaned up.
    Then, when I iterate that, quite basically, my friends with diagnosed fibro feel BETTER with exercise, while I end up in severe pain with 1/2 the exertion, he tells me that I'm not exercising enough.
    Needless to say, I'm not going back. But how do others deal with this prejudice and ignorance?
     
    jpa123, alkt, NilaJones and 14 others like this.
  2. TenuousGrip

    TenuousGrip Senior Member

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    That's how I deal with it: by never going back to that doctor.

    Years ago I thought I could change the doctors. Life got better ... for me ... when I abandoned that charming little notion ;-)

    All the best to you in finding somebody whose clinical knowledge is more recent than fire and the wheel.
     
    alkt, NilaJones, MEMum and 15 others like this.
  3. BeautifulDay

    BeautifulDay Senior Member

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    It's was very difficult when our insurance changed and we had to find new doctors. @lllamamom I feel for you.

    It's can be a constant uphill battle. In addition, when coming across such ignorant doctors, the fight to be taken seriously becomes an inner battle of strength and hope. Of finding the will to keep going when being dismissed as told it's stress or nonsense or being told to workout more.

    Then once taken seriously, the practice might not be a fit. Yet, often we stay anyway because the alternative is worse.

    The battle is won in the head and heart. Our game of Life is immensely different than theirs.
     
    alkt, MEMum, jesse's mom and 6 others like this.
  4. lllamamom

    lllamamom

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    There are only two doctors in the town that take our insurance. Sigh. It didn't help when he did the useless "Squeeze my fingers, push up on my hands, etc" tests and pronounced me "plenty strong". Telling him I've lost +50% of my muscle strength apparently didn't register. All he saw was a mid-60s woman who could turn his lily white fingers whiter. <evil grin>. I'm about to quit being polite. I need help, not platitudes!
     
    alkt, NilaJones, MEMum and 8 others like this.
  5. Cheesus

    Cheesus Senior Member

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    I add the doctor to my hitlist. My hitlist is a list of doctors who I have found to be negligent in their duty of care towards me.

    Once I have objective evidence of what is wrong with me, I will write to these doctors individually, explaining to them how their negligence and arrogance causes harm. I will suggest that they know less than they think they know, and that they should practice with humility so as to make sure their damaging attitude does not cause further harm to people in the future. I will ask them if they entered medicine to stroke their egos or help sick people. I don’t expect a response.

    I already sent a similar letter to one doctor. He had prescribed me GET. I highlighted all the problems with the PACE trial then asked him if he had any treatment for me with a good evidence basis. I never heard back from him. He is still on the list.
     
    alkt, NilaJones, MEMum and 19 others like this.
  6. Joh

    Joh Inactivist

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    I have exactly the same plan and am dreaming about this day often!
     
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  7. RebeccaRe

    RebeccaRe Moose Enthusiast

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    I get sad. I get angry. I doubt myself and think that maybe everything's all in my head.

    I think I need some better coping mechanisms...
     
    alkt, Pink, jesse's mom and 7 others like this.
  8. pattismith

    pattismith Senior Member

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    I had the same plan, unfortunately many of them will be already retired when I will be in a position to do it :lol:
     
    alkt, MEMum, Mel9 and 3 others like this.
  9. Runner5

    Runner5 Senior Member

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    Is there an online review service where you can award him 1 star? I think Google does something like that?

    Sorry that happened to you. I've been laughed at by doctors and ridiculed before and it was horrible. :(

    ((hugs))
     
    alkt, jesse's mom, Mel9 and 5 others like this.
  10. Kenshin

    Kenshin Senior Member

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    That's not a bad idea, a doctor ratings website, though it could get confusing with all the overlapping names, and the horny doctors trying to search for a doctors dating website.
     
    alkt, Mel9, Joh and 1 other person like this.
  11. Gingergrrl

    Gingergrrl Senior Member

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    I love it @Cheesus and have many doctors to add to your list! :devil:

    LOL... thanks for making me laugh :rofl:
     
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  12. Shoshana

    Shoshana Northern USA

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    A doctor like that one @lllamamom is clearly not educable, so must be fired!

    I am sorry you had to hear that negative, untrue, uninformed stuff, supposedly about you, coming from people who are supposed to be informed, respectful, and helpful.

    I hope you can find a better one, with that change in coverage you had!

    I too, get sad and ANGRY, as @RebeccaRe said.... but do try to keep repeating the truth to yourself, that ones like that ARE ignorant and biased and uninformed, and they are refusing to listen and to then, reconsider the position they had previously decided on, with no factual evidence, and without even listening to your case.
     
    alkt, Mel9, pattismith and 2 others like this.
  13. Learner1

    Learner1 Forum Support Assistant

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    I've found its best not to lead with ME/CFS, but bring in my abnormal labs and a list of all my symptoms and ICD10 codes.

    And a copy of the attached, annotated with my issues written next to the appropriate boxes. I've never seen Dr. Holtorf, but his diagram makes a lot of sense for many of us.

    Then I share my list of goals, concerns, and questions. I've gotten varied responses, but at least it keeps us from arguing about whether ME/CFS is real or not and keeps the discussion focused on the concerns and questions. And, its better to drive farther to see s useful doctor than a useless one nearby.

    Good luck with Doctor #2!
     

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  14. wastwater

    wastwater Senior Member

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    I’ve just been given the eat better,exercise more get a routine and preferably a job by a new doc that has me concerned especially as dwp reassessments are due
    Thinking of a surgery change
    Searching for evidence at moment which is going fairly well considering
     
  15. i-lava-u

    i-lava-u Senior Member

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    disbelieving doctors, rrrrrrr, so annoying indeed!! when i first got ill at 17 the doctor told me my fatigue was normal because i was a teenager. he said my dramatic weight loss must be from an eating disorder...unfortunately, only the first of far too many bad experiences

    i wish there was some way to magically have these people experience what it feels like to have this illness. they would never doubt it again.
     
    jpa123, alkt, MEMum and 7 others like this.
  16. mattie

    mattie

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    We have a review site for GP’s hospitals and specialists here in the Netherlands.
    And boy is my previous gp on there with my 1 star rating.

    www.zorgkaartnederland.nl
     
    alkt, Kenshin, i-lava-u and 2 others like this.
  17. Joh

    Joh Inactivist

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    I'd like to rate more of the doctors I've met in the past. But the worst ones worked in psychosomatic clinics (where I had to explore my subconscious "illness gains", "repressed trauma" and why I don't want to get better three times so far). As hospital doctors they're not listed on rating websites (just the clinic).

    Can't wait for the day a biomarker is found and this is how I imagine myself:
    [​IMG]

    Hi @Gingergrrl, I'm curious, because you're already at that point that we dream about: you have objective evidence about abnormalities and a successful treatment. Did you have a list and did you write any of your former disbelieving doctors and if so, did you get an answer? :)
     
    alkt, MEMum, Sundancer and 12 others like this.
  18. i-lava-u

    i-lava-u Senior Member

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    @Joh ha ha...love the kermit!!! thx for the laugh :)
     
    alkt, MEMum, Shoshana and 2 others like this.
  19. Gingergrrl

    Gingergrrl Senior Member

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    @Joh it's kind of complicated to explain but since I am only 50% through the Rituximab treatment and dealing with two different insurance companies, I am not in a position to say anything to any doctor who could become vindictive and try to sabotage my treatment. So for now, I am working with my ME/CFS doctor and Mast Cell doctor (who are both amazing) and not saying a word to the docs on my Cheesus list. But hopefully that day will come...
     
    alkt, NilaJones, MEMum and 4 others like this.
  20. Joh

    Joh Inactivist

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    I think a new term is coined - Cheesus list. :)

    I follow your journey closely, so I guess I'm surprisingly well informed for someone who's on another continent and in bed. Fingers crossed (in German is would be thumbs pressed) that your treatment continues to be successful and covered by insurance.

    May the day for all our Cheesus lists come soon. :hug:
     
    alkt, MEMum, kelly8 and 7 others like this.

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