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’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?”
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.
Untreated mental illness is the norm in that Industry, as is substance abuse and suicide.
So given the abuse (physical and mental) in addition to her eating disorder and mental health problems chances are she probably wouldn't have made her first year working line without severe consequences. Culinary school often depicts a false-reality of the Industry, and rarely do most of its graduates fare better than a seasoned cook who made his way up from the dish pit/prep cook in my experience, because doing that at least vets people who actually can still show up after what is a romanticized view of an abusive, low paying, high stress work environment.
I'm glad she was able to identify her illness and despite this affliction she was able to persevere and live her Life as best she can but their are likely no words to adequately describe the ordeal this would do to a cook despite this journalist's best attempts.
I normally dismiss Social Media as a viable means for non-vanity based, shallow, vapid forms of communication and will often refer to it as the cesspool that it is, but I'm glad this was there to help her recover. Especially since COVID killed most people's social life.
The hospitality industry is a shadowy, drug and crime filled industry. Its truly disturbing know what shit goes on in our food production area's.
(I'm a software developer curious about food technology, and interested in the industry, problems, and potential improvements)
Vaguely from this [0], and I find rather it painfully ironic that one of the supporters (Bourdain) of that book died from suicide in what was likely ongoing depression and unresolved mental health isses that led to former bouts with substance abuse in addition to a horrible catastrophic relationship spat occurring in public.
Personally speaking when I first read Kitchen Confidential when I was a prep cook in catering during university I knew he was very likely going to take his life.
As a former developer myself, smart contract/blockchain stuff, with an emphasis in Supply Chain with several years in the Auto Industry, my opinion their is really not much that can be solved with software alone before the underlying machinations and culture of the Culinary Industry itself is resolved. COVID was a real wake up call, but not much has changed from what my former colleagues tell me, other than a slight pay raise ($1-2) for tenured and seasoned cooks. That was hard to justify from management during 50% capacity most of the country is still dealing with.
We had touch-screens to manage our individual orders/tickets on our station to help expo streamline things, and while that was interesting (my station's screen had a tendency to disconnect in the middle of service when things got super heated or wet from a persistent leak) and gave us a little autonomy to coordinate with the other stations it could and often created more problems than solved if the expo was mediocre which is why they got rid of them.
Maybe if you focus on tax or payroll related stuff for accounting, especially with how to deal with PPP? Also if you can find a way to lower food losses/costs that could be incredibly useful? But all of this could and should be done with creative menu offerings that utilize the 'scrap' and upsale the protein in another dish.
0: https://www.instyle.com/news/40-chefs-share-their-favorite-c...
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 it takes 10 to 14 years for people to be diagnosed
Why so long? The global databases of medical information should contain the relevant symptoms, right?
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 gastroparesis? Unlikely, but let’s keep it on
Ok so you try and treat anorexia, and it didn’t work (except, it did? The article wasn’t clear). Was it terrible that nobody took her at her word and worked this up? Absolutely. What else do you work up? You do a colonoscopy or upper endoscopy, you take samples of your intestine (which looked fine under the microscope most likely), you do some ct scans, and you do a gastric emptying study to make sure food is moving through intestines appropriately.
I don’t really know where I’m going with this, other than to say you’re right that we should be better, and not cause suffering. But hindsight is 20/20
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.
> 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.
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?
Some people have spoken about the GP missing EDS, and those are good points. There's a bit of work happening in England to improve rates of diagnosis for those patients.
I want to talk a bit about the MH aspect. There are four separate systems in the UK. Scotland, Northern Ireland, Wales, and England all have separate NHS systems. I'm only going to talk about the English system.
In England commissioning is split across clinical commissioning groups and NHS England. England has been split into geographical regions, and each region has a CCG. That CCG will commission the bulk of healthcare for their local population. This includes most, but not all, mental health care. Some conditions are rare and highly specialist, and so it doesn't make sense for those to be commissioned by CCGs. That commissioning ("specialist commissioning") is done by NHS England. This includes in-patient eating disorder treatment.
Commissioners don't have to buy services from NHS provider organisations. I think the current law even says that commissioners are not allowed to prefer one type of provider over another - they're not allowed to say they'd prefer to give the contract to an NHS provider over a private provider.
A lot of healthcare is paid for by the NHS, but provided by private providers. This is especially true when we look at specialist commissioning for mental health. There are a lot of low secure units, medium secure units, in-patient eating disorder units, etc that are provided by private companies.
The quality of care from these private orgs is often terrible.
The split between CCG commissioning and NHS England specialist commissioning means that it's very difficult to get the local system to understand or care about the poor quality of specialist commissioning.
