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Nil-by-mouth foodie: A chef who will never eat again

bbc.com

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Re: Nil-by-mouth foodie: A chef who will never eat again

#11

Post by unanswered »

DoreenMichele wrote: post #9

Oh, good lord, they tortured her and assumed she was just stubbornly "behaving badly" because "crazy." I'm appalled but a lot of the elements of her story are all too familiar. "You are just crazy" is a common accusation for anyone doctors can't readily diagnose and it's a horrible, horrible experience.

Every person involved should be criminally charged for kidnapping and torture. But they never will be, because they're just "doing their jobs" and "part of the system", and the main purpose and function of "the system" is to isolate its cogs from responsibility.

Re: Nil-by-mouth foodie: A chef who will never eat again

#12

Post by Buttons840 »

epmaybe wrote: post #8
_cs2017_ wrote: post #6

On top of the tragic circumstances outside of anyone's control, it's mind-boggling how much unnecessary pain and suffering was caused by the medical system. Given that the UK is one of the better countries in medical care quality, why are things still so bad? I understand the disease is rare, but even if it's not diagnosed, surely there's a way to realize that they are just torturing the patient? Also: > On average i…

Read the next part of that statement in the article... On average it takes 10 to 14 years for people to be diagnosed, says Dr Alan Hakim of the Ehlers-Danlos Society, because the symptoms of hEDS are so varied and may not appear to be linked Imagine you’re a doctor and a young woman comes in cause they aren’t eating. What’s at the top of your differential? Anorexia, certainly Cancer, potentially Diabetes leading to g…

There is always the possibility that we just won't know the cause of some medical symptoms no matter how much we test and investigate.

My question is, how often will we "just not know"?

So the doctors do some common tests and still don't know what's going on. From there, what are the odds that further tests will reach a helpful diagnosis, and what are the odds we will just never find anything helpful no matter how much we test and check?

Re: Nil-by-mouth foodie: A chef who will never eat again

#13

Post by wolfpack_mick »

epmaybe wrote: post #8
_cs2017_ wrote: post #6

On top of the tragic circumstances outside of anyone's control, it's mind-boggling how much unnecessary pain and suffering was caused by the medical system. Given that the UK is one of the better countries in medical care quality, why are things still so bad? I understand the disease is rare, but even if it's not diagnosed, surely there's a way to realize that they are just torturing the patient? Also: > On average i…

Read the next part of that statement in the article... On average it takes 10 to 14 years for people to be diagnosed, says Dr Alan Hakim of the Ehlers-Danlos Society, because the symptoms of hEDS are so varied and may not appear to be linked Imagine you’re a doctor and a young woman comes in cause they aren’t eating. What’s at the top of your differential? Anorexia, certainly Cancer, potentially Diabetes leading to g…

It has to do with the way western medicine is organized. It’s optimized for treating diagnosable illnesses, and does that very well.

Complex multisystem diseases like Ehlers-Danlos syndrome express themselves differently in every patient. Different symptoms take you to different specialists, but there’s no one to look at your situation holistically, or who has the time to put it all together. There’s apparently a new approach called ‘Functional Medicine’ which tries to better this issue.

I’m reading Sarah Ramey’s ‘The Ladies Handbook for Her Mysterious Illness’. Part autobiography of her own experiences, part explanation about this whole cloud of mysterious illnesses from ME/CFS to Fibromyalgia to Ehlers-Danlos syndrome. It must sound like a terrible choice for anyone but those affected, but Ramey has great literary qualities and zero tendency to linger in self-pity and the injustice done to the patients. Really worth the read.

Re: Nil-by-mouth foodie: A chef who will never eat again

#14

Post by LorenPechtel »

DoreenMichele wrote: post #9

Oh, good lord, they tortured her and assumed she was just stubbornly "behaving badly" because "crazy." I'm appalled but a lot of the elements of her story are all too familiar. "You are just crazy" is a common accusation for anyone doctors can't readily diagnose and it's a horrible, horrible experience.

Yup, this is par for the course. The docs are going to think psych over zebra. That goes on until you get lucky and find a doc who actually listens and understands--and I suspect for many patients that day never comes. Especially if you don't fit one of the already-diagnosed rare problems.

Re: Nil-by-mouth foodie: A chef who will never eat again

#15

Post by LorenPechtel »

_cs2017_ wrote: post #6

On top of the tragic circumstances outside of anyone's control, it's mind-boggling how much unnecessary pain and suffering was caused by the medical system. Given that the UK is one of the better countries in medical care quality, why are things still so bad? I understand the disease is rare, but even if it's not diagnosed, surely there's a way to realize that they are just torturing the patient? Also: > On average i…

The UK system is decent for emergency things and for routine things. As is normal for UHC systems it doesn't do too well with issues that aren't either. They don't bite enough people for the voters to vote the money needed.

Re: Nil-by-mouth foodie: A chef who will never eat again

#16

Post by LorenPechtel »

Buttons840 wrote: post #12
epmaybe wrote: post #8

Earlier quoted context omitted.

Read the next part of that statement in the article... On average it takes 10 to 14 years for people to be diagnosed, says Dr Alan Hakim of the Ehlers-Danlos Society, because the symptoms of hEDS are so varied and may not appear to be linked Imagine you’re a doctor and a young woman comes in cause they aren’t eating. What’s at the top of your differential? Anorexia, certainly Cancer, potentially Diabetes leading to g…

There is always the possibility that we just won't know the cause of some medical symptoms no matter how much we test and investigate. My question is, how often will we "just not know"? So the doctors do some common tests and still don't know what's going on. From there, what are the odds that further tests will reach a helpful diagnosis, and what are the odds we will just never find anything helpful no matter how mu…

While it wouldn't have directly lead to a diagnosis listening to her would have helped a lot. Note that they found the solution before they found the diagnosis.

Re: Nil-by-mouth foodie: A chef who will never eat again

#17

Post by ampdepolymerase »

wolfpack_mick wrote: post #13
epmaybe wrote: post #8

Earlier quoted context omitted.

Read the next part of that statement in the article... On average it takes 10 to 14 years for people to be diagnosed, says Dr Alan Hakim of the Ehlers-Danlos Society, because the symptoms of hEDS are so varied and may not appear to be linked Imagine you’re a doctor and a young woman comes in cause they aren’t eating. What’s at the top of your differential? Anorexia, certainly Cancer, potentially Diabetes leading to g…

It has to do with the way western medicine is organized. It’s optimized for treating diagnosable illnesses, and does that very well. Complex multisystem diseases like Ehlers-Danlos syndrome express themselves differently in every patient. Different symptoms take you to different specialists, but there’s no one to look at your situation holistically, or who has the time to put it all together. There’s apparently a new…

To be fair, there is an entire branch of (MD equivalent) accredited US medicine called Osteopathic medicine that claims to use a multisystems holistic approach to treat patients.

Re: Nil-by-mouth foodie: A chef who will never eat again

#18

Post by lostmsu »

epmaybe wrote: post #8
_cs2017_ wrote: post #6

On top of the tragic circumstances outside of anyone's control, it's mind-boggling how much unnecessary pain and suffering was caused by the medical system. Given that the UK is one of the better countries in medical care quality, why are things still so bad? I understand the disease is rare, but even if it's not diagnosed, surely there's a way to realize that they are just torturing the patient? Also: > On average i…

Read the next part of that statement in the article... On average it takes 10 to 14 years for people to be diagnosed, says Dr Alan Hakim of the Ehlers-Danlos Society, because the symptoms of hEDS are so varied and may not appear to be linked Imagine you’re a doctor and a young woman comes in cause they aren’t eating. What’s at the top of your differential? Anorexia, certainly Cancer, potentially Diabetes leading to g…

I agree. See also this quote:

> Confining her to a secure unit and forcing her to eat had been pointless.

This is absolutely not true. If they did not do this and the desease or another workaround was not discovered, she would likely have died.

Re: Nil-by-mouth foodie: A chef who will never eat again

#19

Post by jmole »

DoreenMichele wrote: post #9

Oh, good lord, they tortured her and assumed she was just stubbornly "behaving badly" because "crazy." I'm appalled but a lot of the elements of her story are all too familiar. "You are just crazy" is a common accusation for anyone doctors can't readily diagnose and it's a horrible, horrible experience.

I felt this in my bones.

I’ll tell a doctor that almost anything I eat makes me feel bad, and when I don’t eat anything at all (which of course is not sustainable), I have amazing amounts of energy and can actually think clearly.

Then I get the look. I can see the thought process in their head: ...must be an eating disorder... Immediately followed by, “has your weight changed recently?”

Re: Nil-by-mouth foodie: A chef who will never eat again

#20

Post by DoreenMichele »

jmole wrote: post #19
DoreenMichele wrote: post #9

Oh, good lord, they tortured her and assumed she was just stubbornly "behaving badly" because "crazy." I'm appalled but a lot of the elements of her story are all too familiar. "You are just crazy" is a common accusation for anyone doctors can't readily diagnose and it's a horrible, horrible experience.

I felt this in my bones. I’ll tell a doctor that almost anything I eat makes me feel bad, and when I don’t eat anything at all (which of course is not sustainable), I have amazing amounts of energy and can actually think clearly. Then I get the look. I can see the thought process in their head: ...must be an eating disorder... Immediately followed by, “has your weight changed recently?”

Yeah, I have a genetic disorder that impacts gut function. I wasn't properly diagnosed until my mid thirties.

I was a bag of bones as a child because of it and teased because of that. I have belly bloat as a side effect and have long had to deal with the negative attitudes about weight in the US.

Etc. Ad nauseam.

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