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I’m A Doctor With Chronic Illness. Here Are 12 Things I Wish People Knew (HuffPost)

Discussion in 'General ME/CFS news' started by Woolie, Dec 1, 2017.

  1. Woolie

    Woolie Senior Member

    Not about ME as such, but the general points also apply to us (very nice, short, powerful piece).

    Some excerpts:
    Click through to the article to read the rest and show your support!
    Last edited: Dec 1, 2017
    MEMarge, rvallee, sea and 35 others like this.
  2. Sasha

    Sasha Senior Member (Voting Rights)

    It's an excellent article - I agree, click through and give it some traffic! :)
  3. Allele

    Allele Senior Member (Voting Rights)

    Wow, so well-written. It's so great the author was able to articulate so clearly what I simply cannot any longer.
    MEMarge, rvallee, sea and 8 others like this.
  4. Cheshire

    Cheshire Moderator Staff Member

    There was a French article a few days ago not about doctors who have chronic illness, but who used an app to simulate daily life with a chronic illness. Even that far from reality experience was an eye openner for them:

    Google translate: https://translate.google.fr/translate?sl=fr&tl=en&js=y&prev=_t&hl=fr&ie=UTF-8&u=http%3A%2F%2Fwww.leparisien.fr%2Fsociete%2Fcomment-des-medecins-se-sont-vraiment-mis-dans-la-peau-de-malades-29-11-2017-7421427.php%23xtor%3DAD-1481423554&edit-text=
    That question of realising the extend of the limitations we experience day by day due to illness is very important. I think that's one of the things Unrest achieved.

    Edit: Google translate link doesn't seem to work, here are some parts:

    "For two days, the professionals of the hospital have collapsed under the calls and SMS issued by a dedicated team to achieve real-time challenges and immerse themselves in the throes of the disease: fatigue, diarrhea, accidents. incontinence. "I received text messages saying that I had ten minutes to go to the bathroom, so I had to apologize to my interlocutors, details Xavier Hébuterne. At night, I was woken up twice for the same reasons. The next day, I had to get up an hour earlier, at 5:25 am, for care. Later, a call told me that I was too tired to continue my day, that I had to lie down for a while. This reality, our patients live it daily. I even had to wear a diaper, as some should do during the push phases of their illness: it is horribly hot and uncomfortable. I now know how they feel. "

    "This application has been developed with the help of expert patients. "To make those who care for us aware of our disease. Patients often feel they are not understood, not heard and ashamed. This experience can help to change medical practices, "decrypts Eric Balez, 52 years, including thirty-five ulcerative colitis. The University Hospital of Nice intends to turn the report into action. "During the test, I was called in the middle of my workday to hear me say that my examination results (Editor's note: fictitious) were not good, that an operation was being considered. I fell from above. And yet, this type of thing, we do it, obviously not out of spite. The result is terrible, I will not do it anymore. We must think of other ways. Empathy is part of the treatment, points Xavier Hébuterne. Better knowledge of the symptoms makes it possible to manage them earlier, to be more efficient, including making appointments, "he continues."
    Last edited: Dec 2, 2017
  5. Sean

    Sean Moderator Staff Member

    As I have said before, the medical profession has a massive inbuilt bias in that it selects for people with serious stamina. Medicine is a very demanding profession, especially for younger doctors who still routinely do 80 hour weeks, but also many senior specialists too.

    It is hard for people like that to understand what is is like to suddenly not be able to do it.
  6. Squeezy

    Squeezy Senior Member (Voting Rights)

    The couch
    @Woolie I love this, it's great. I particularly liked when she said that one of our best days was probably a sick day for one of them! So true.

    @Cheshire Every damn doctor should be made to do this! I love it nearly as much as I love my first cup of tea of the day. That's serious love.

    @Sean 100% correct. My brother is a hospital doctor with crazy hours and can't empathise at all. He's a nice guy. Just has no idea. Programmed to work on through the exhaustion. I suppose he regards me as a wimp. Who needs GET. :banghead::mad::arghh:
  7. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

    Really good article...one to bank for sending to friends and family who don't understand
    MEMarge, Amw66, Yessica and 4 others like this.
  8. Allele

    Allele Senior Member (Voting Rights)

    A huge round of applause to that French doctor and all participants. What an amazing idea, and kudos to those medical professionals
    open enough to participate in this experiment of empathy and understanding.
  9. Subtropical Island

    Subtropical Island Senior Member (Voting Rights)

    I’d like to read this but I can’t get past the cookies disclaimer (it won’t accept my clicking it).
    Is there any other way to read it? Or a secret to getting past the disclaimer?

    I love the quotes you have given us, thanks!
    MEMarge and Cheshire like this.
  10. Amw66

    Amw66 Senior Member (Voting Rights)

    This should be part of syllabus for medicine students - a day' s experience.
  11. rvallee

    rvallee Senior Member (Voting Rights)

    It's seriously disappointing how completely absent the reality of illness is from medical training. Physicians tend to have a cartoonish understanding of illness, as if it were just some attribute that follows you around but otherwise has no more impact than the color of your hair.

    It should be at the core of medical training. Yet if someone attempted that it would be aggressively rejected as a waste of time.

    If it were possible to have medical professionals truly experience chronic illness, medicine would be turned on its head and reformed top to bottom. For now, it's by physicians, for physicians.

    Also likely controversial but: people incapable of empathy should not work in medicine. It handicaps them every bit as much as it would a deaf musician. Too much of the illness experience is subjective and requires at least attempting to understand it to be effective. And it's not even as if cold, hard logic was the actual result of the current system, as the logical fallacy of the psychosocial model of ME makes very clear. There's plenty of magical thinking going around. It may not be fairies and leprechauns but some of it may as well be.

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