Invisible Illness Awareness Week 2016: Our Voices Need to Be Heard
Never heard of Invisible Illness Awareness Week? You're not alone. Jody Smith sheds a little light to make it more visible
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Dealing with disbelieving doctor

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

  1. Shoshana

    Shoshana Northern USA

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    Thumbs pressed ! :)

    We can add that in, to our PR list of terms. Thanks for sharing that with us, @Joh

    Even though it is not a new term, it IS new to many of us, and we like to learn from each other. :hug:

    I do not have a written Cheesus list, but I KNOW who they are! :thumbsup::lol:
     
    Mel9, Countrygirl, lllamamom and 3 others like this.
  2. Gingergrrl

    Gingergrrl Senior Member

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    I love it!

    Thank you and if I could, there are three Neuros, a rheumy, a pulmonologist, and my former PCP that are on my Cheesus list but it is not in my best interest at this time to say anything. The worst of all the docs I mentioned, who came close to destroying my chances of getting treatment, was a Neuro at Stanford but it would truly work against me to ever contact him again and I do not intend to.

    Amen! Fingers crossed and thumbs pressed!

    Edit: Cross posted with Shoshana!
     
    Joh and Shoshana like this.
  3. lllamamom

    lllamamom

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  4. Whoops

    Whoops

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    As a 6' 5" 285 lb male, I feel where you are coming from. My previous neurologist who was literally half my size did the push/pull tests and told me that I did not have any indications of weakness, I about lost it. I could have thrown this little person across the room 10 years ago. As a former avid biker, hiker and backpacker, I have always had incredible leg strength and in the past could easily max out the leg presses at the gym and do a full set at the max weight of 600 lbs without breaking a sweat. So I think it is especially funny that a puny toothpick doctor even thinks he is capable of accurately evaluating a decline in my strength. Why isn't there a more quantitative method of measuring strength and/or weakness?
     
    pattismith likes this.
  5. lllamamom

    lllamamom

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    There is--however, the meters seem only to be in hand specialist's offices, or such. Everyone else relies on the ridiculous "squeeze my finger". I agree with you, Whoops, I'm not your size, but often think about the amount of hurt I could put on a doctor if I took them literally. Indeed, one snippy doctor told me I was "too strong" for my age. I just looked at him, and asked if he'd ever heard of working out. He chided me for "not going to a gym". I pointed out that the nearest gym was 50+ miles away, and the barn, with weight lifting <hay bales, poop shovels, wheelbarrows>, cardio <moving the animals, chasing the dogs, getting rid of the rattlesnakes> and endurance--too numerous to list here--was 100 yards away. And cheaper.

    I suggest that there be a coordinated campaign here in the US to bring ME to the forefront--make May 12, ME Awareness Day, something that gets covered in the local news, even if it means spending our entire "envelope" for the period. Otherwise, nothing will get done. UnRest got us started on the path--what about those of us able to, calling or writing NPR, or wherever, and saying "that's a start, but there's more of us. Here's our story..."
     
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  6. RWP (Rest without Peace)

    RWP (Rest without Peace)

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    Excellent job of fighting back! Have you seen this new article in the New York State Family Physicians mag/journal by Mary Dimmock et. al.? We all should have a copy handy when encountering ignorant doctors for the first time!

    http://forums.phoenixrising.me/inde...n-me-by-mary-dimmick-et-al.57746/#post-956210

    Sorry for your suffering.

    RWP + PWR
     
    Mel9 and Countrygirl like this.
  7. Daffodil

    Daffodil Senior Member

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    i say, "alright" with a smile and walk out of the office. stopped trying to argue a long time ago
     
  8. lllamamom

    lllamamom

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    That is a great article!

    My GP last week asked for information. I'm giving her this article, the physician's research from me association.org.uk, and one other long article. At least she asked! Fingers crossed
     
    Mel9 likes this.
  9. Mel9

    Mel9 Senior Member

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    I have my copy printed out and ready
     
  10. RWP (Rest without Peace)

    RWP (Rest without Peace)

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    That's wonderful! Hoping for the best!

    RWP + PWR
     
  11. Stretched

    Stretched Senior Member

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    I’ll join your anger, frustration, against this doctor and his silent contingency... . I am w/o a doctor. A few years back I got referrals to try non affiliated CFS doctors.

    I called and each appointment administrator probed for my specific illness. I told them in a round about manner about “real CFS,” bypassing yuppie flu and other frivolous
    diseases. Each called back within a few days stating they didn’t treat CFS, as if they were card carrying anti-CFS club members.

    I was so livid I wanted to go by the CDC (nearby) and pick up (abscond with) some toxic neuocleotide Tiger urine or equivalent near lethal nuclear contaminated monkey poo and send it to each good doctor, smeared all over the insides of sealed plastic envelopes on top of mints. I didn’t, of course after I got over my rage,

    Instead, I decided on a mail campaign, like resume sending to another 30 prospective GPs. All neat, tidy, polite. I did not get so much as a phone reply! Well, that did it for me. I’ll learn it myself, having degrees and experience in academic publishing. I’ll tell you this, these good old boys were graduates of or affiliated with Emory Universty.

    I don’t have an answer for you but my other specialists are no way Emory affiliated. My opinion on this one is litigation, of a class action nature against the AMA and individually against the would be defendants. I think this as a group action is the only way we’re going to get legitimate international attention and respect. The problem is who we’re going to as point man to fund, and the other to run the litigation?
     
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