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

Woolie

Woolie

Senior Member
Not about ME as such, but the general points also apply to us (very nice, short, powerful piece).
https://www.huffingtonpost.com/entr...3f0e4b09413e786aec1?ncid=engmodushpmg00000003

Some excerpts:
1. Nobody wants to feel sick.

In all my years as a doctor treating patients with chronic illness, I never saw a patient who enjoyed feeling ill. I saw the opposite, patients who were once very active, desperately trying to find answers and treatment for their overwhelming symptoms.
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2. Many doctors don’t understand chronic illness.

For years, doctors were under the misperception that some chronic illnesses were caused by depression or anxiety and the only treatment available for these patients was psychiatric care.

Despite medical evidence disproving this perception, some doctors are “set in their ways” and do not truly understand chronic illness or how to appropriately address it. Therefore, patients often have to spend precious time searching for a doctor who understands their illness and provides appropriate treatment options while their symptoms potentially worsen.
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Click through to the article to read the rest and show your support!
 
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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:
http://www.leparisien.fr/societe/co...des-29-11-2017-7421427.php#xtor=AD-1481423554

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."
 
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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.
 
@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:
 
Cheshire said:
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:
http://www.leparisien.fr/societe/co...des-29-11-2017-7421427.php#xtor=AD-1481423554

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."
Click to expand...

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!
 
Cheshire said:
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:
http://www.leparisien.fr/societe/co...des-29-11-2017-7421427.php#xtor=AD-1481423554

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."
Click to expand...
This should be part of syllabus for medicine students - a day' s experience.
 
Cheshire said:
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:
http://www.leparisien.fr/societe/co...des-29-11-2017-7421427.php#xtor=AD-1481423554

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."
Click to expand...
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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