Yeah. Stop pretending the healthcare system has the resources to deal with unknown diseases.
If they can’t find a diagnosis, you’ll get told that you’re probably anxious or depressed, or malingering, and get told to exercise and eat healthy. This is what I was told when I was literally bedridden for a year by an undiagnosed neurological disease.
It’s a pretty horrible position to be in. My disease which is relatively common but not taught in most med schools took me three years and 23 doctors before I got diagnosed, even though diagnosis is based on fairly simple clinical observations.
Awful and I can even try beginning to imagine the kinds of things patients affected might be told by doctors… (“I get tired too, …, get more sleep before your next appointment”)
I ha the the fact that the first half of it sounded exactly like me
However, as soon as it got to the hallmark symptom, I felt pretty lucky. I don’t have any sort of post-exertional crash or anything. I’ll be a bit tired but feel good
Kinda sounds like you’re refering to a particular country’s healthcare system (whilst assuming OP meant this same one), but you didn’t specify.
You could be talking about Brazil, Kenya, New Zealand, even France. Without that bit of info, it’s hard to learn much from what you’re sharing.
Anyway, bloody awful what happened to you, madness! I hope once you got your diagnosis that things improved, and that you’re doing grand these days :-)
Having worked for advocacy groups for my disease, this is literally a universal issue and affects even the best systems. The only cases where this tends not to be an issue are extremely expensive private doctors who take all the time in the world to investigate for you.
Yeah, even with a great public system not every doctor can look after a patient with the same amount of care
I would assume that, however, private hospitals have better services in countries with better public healthcare since they would have less customers and would be inclined to serve the best of what’s possible
It tends to actually be a worse problen in europe than the US.
In the US the problem is more that doctors tend to diagnose you with something you don’t have and prescribe drugs that won’t help you (pharmaceuticals thanks).
In europe, where the government strongly controls the medical system, the government has promoted rules that minimise the costs of disability benefits and delegitimise disabling illness as “hysteria” or whatever, so that the government doesn’t have to pay as much disability benefits.
Take the UK for example, Sir Simon Wessely, who based his career on claiming ME (and now Long COVID) are all in the mind, which was disproven later on. Where is he now? He was knighted by the Queen, serves on the board of directors of the NHS, leads the government’s Science Media Center. Oh and he also earns massive commissions on being a consultant for disability insurance companies.
His famous quote, which is linked to him advising UK parliament in the 90s, is “[disability] Benefits will actually make these patients worse” (because he believed they were malingerers). A quote that probably led to hundreds of deaths of people with ME starving to death.
Yeah. Stop pretending the healthcare system has the resources to deal with unknown diseases.
If they can’t find a diagnosis, you’ll get told that you’re probably anxious or depressed, or malingering, and get told to exercise and eat healthy. This is what I was told when I was literally bedridden for a year by an undiagnosed neurological disease.
It’s a pretty horrible position to be in. My disease which is relatively common but not taught in most med schools took me three years and 23 doctors before I got diagnosed, even though diagnosis is based on fairly simple clinical observations.
Oh wow
Awful and I can even try beginning to imagine the kinds of things patients affected might be told by doctors… (“I get tired too, …, get more sleep before your next appointment”)
Wishing the best for you and the community
I ha the the fact that the first half of it sounded exactly like me
However, as soon as it got to the hallmark symptom, I felt pretty lucky. I don’t have any sort of post-exertional crash or anything. I’ll be a bit tired but feel good
Kinda sounds like you’re refering to a particular country’s healthcare system (whilst assuming OP meant this same one), but you didn’t specify.
You could be talking about Brazil, Kenya, New Zealand, even France. Without that bit of info, it’s hard to learn much from what you’re sharing.
Anyway, bloody awful what happened to you, madness! I hope once you got your diagnosis that things improved, and that you’re doing grand these days :-)
Having worked for advocacy groups for my disease, this is literally a universal issue and affects even the best systems. The only cases where this tends not to be an issue are extremely expensive private doctors who take all the time in the world to investigate for you.
Yeah, even with a great public system not every doctor can look after a patient with the same amount of care
I would assume that, however, private hospitals have better services in countries with better public healthcare since they would have less customers and would be inclined to serve the best of what’s possible
It tends to actually be a worse problen in europe than the US.
In the US the problem is more that doctors tend to diagnose you with something you don’t have and prescribe drugs that won’t help you (pharmaceuticals thanks).
In europe, where the government strongly controls the medical system, the government has promoted rules that minimise the costs of disability benefits and delegitimise disabling illness as “hysteria” or whatever, so that the government doesn’t have to pay as much disability benefits.
Take the UK for example, Sir Simon Wessely, who based his career on claiming ME (and now Long COVID) are all in the mind, which was disproven later on. Where is he now? He was knighted by the Queen, serves on the board of directors of the NHS, leads the government’s Science Media Center. Oh and he also earns massive commissions on being a consultant for disability insurance companies.
His famous quote, which is linked to him advising UK parliament in the 90s, is “[disability] Benefits will actually make these patients worse” (because he believed they were malingerers). A quote that probably led to hundreds of deaths of people with ME starving to death.