In my book, Raising Heretics, there is a section about the disturbingly unscientific nature of medicine. One of my proof readers commented on that section, saying he didn’t think it could be accurate. Medicine is considered a science, after all. It is, ostensibly, evidence based, rigorous, and carefully documented. This is the start of that section:
“When I was a kid, doctors were treated as demigods. Patients did what they were told, and trusted that medical treatment was always based on science and evidence. Despite a range of negative experiences with the medical profession over the last few years, my default response to health professionals is still one of trust, so I am always horrified when I look into the evidence base for particular treatments, or specific drugs, and discover the alarming lack of scientific rigour that underpins a lot of common medical treatments.
It is disturbing in itself that the term “Evidence Based Medicine” was first coined as late as 1991, by an academic by the name of Gordon Guyatt at McMaster University. It was not, initially, a way of practicing medicine. Instead, it was the name of a course designed to encourage medical students to make their practice more scientific.
If evidence based medicine was only just being talked about in the nineties, you have to wonder how medicine was practiced before that. Sadly, a startling amount of medical practice has historically been based on assumptions, untested theories, and arrogance. And much of it still is.“
Excerpt from Raising Heretics: Teaching Kids to Change the World, 2021.
Unfortunately, faith in medicine, in doctors, and in test results, is often not only misplaced, but very dangerous indeed. Much of this is not the fault of doctors, who remind me of teachers in that many of them, especially General Practitioners, are doing a wildly difficult job without nearly enough time, resources, or support to do it properly.
In 2016 my daughter had an X-Ray taken of her hips. The radiologist – a qualified medical specialist – who reported on the X-Ray described her hips as normal. When we showed that same X-Ray to her orthopaedic surgeon, he measured the angle of her hips and found it was massively abnormal, which explains why her hips were spontaneously dislocating with every step. Had we paid attention to that radiologist, Zoe’s hips would likely still be dislocating. As it is, she has had radical surgery on both hips and can now walk normally.
In 2000, after four or so years of a debilitating post viral condition that massively impaired my quality of life, and endless rounds of blood tests, scans, and appointments with dismissive medical specialists who felt I was just “trying to do too much”, or possibly I was just an anxious person, I finally figured out that I was probably insulin resistant. Tests came back positive, I started a low carb diet, weight training, and medication, and soon had a whole new quality of life.
I am not a medical doctor. It was hours and hours of trawling through medical literature, as well as online stories from other sufferers, that helped me figure it out. Recently, a random GP at the practice I attend announced in horror “You’ve put on 24kg in FOUR YEARS!” and stared at me accusingly for some time, as though I had spent those four years on a gluttonous rampage of repulsive proportions. After going home distressed, and ranting about that GP for some time, I realised I am once again insulin resistant. Tests confirmed it, it’s now being treated, and on we go.
In 2005, when a friend’s daughter was diagnosed with fructose malabsorption, I went and read up on it and figured out that it could well explain a lot of my gastrointestinal issues. Another round of tests and yep, there I was, successfully diagnosing myself again.
In 2016 I saw a sleep specialist who was alarmed by my symptoms, booked me in straight away for a sleep study during which I got NO deep sleep AT ALL, found my sleep apnoea score was low, and dismissively told me I was fine, I just needed to relax and lose weight. I went home crying.
Eventually I got myself a Continuous Positive Air Pressure (CPAP) machine despite my low score, and found my quality of life improved dramatically, but still wasn’t great. I eventually summoned the courage to see another sleep specialist, who, while correctly diagnosing and treating the remaining problem, pointed out that a low score like mine (above the diagnostic threshold but not crazy high) was indeed fine to ignore, unless the patient snores (FYI, without CPAP I snore like a crazed rhinoceros), in which case CPAP is very effective.
In 2021 my daughter, Zoe, went to see a cardiologist because we suspected she had POTS – Postural Orthostatic Tachycardia Syndrome) – as she kept getting incredibly dizzy, even fainting, when she stood up. That specialist swept into the room, magnificent in his arrogant confidence, and pronounced Zoe merely “deconditioned” as a result of her hip surgery.
Despite the fact that she was very fit and active, he declared that she just needed more exercise. Zoe was understandably dispirited by this, and as her condition worsened over time, she eventually got a referral to a different cardiologist, who reviewed the first cardiologist’s notes and found that BY THAT FIRST SPECIALIST’S OWN CRITERIA, the tests done by that arrogant, ignorant, buffoon of a cardiologist showed that Zoe did, indeed, have POTS. Had Zoe taken that first doctor seriously and not followed up to get a second opinion, it could have been very dangerous.
I hesitate, under the current conditions of vaccine hesitancy and covid denialism, to write a piece that could undermine confidence in the health system, but here we see the huge difference between medicine and science. Vaccines are developed in the lab, rigorously tested, thoroughly documented, and side effects tracked. Much of the medical treatment we receive is not subject to these standards. At all.
But I am so very, very tired. I don’t want to have to become a de facto specialist in order to understand and treat my own health. I want to be able to go to a compassionate, empathic doctor who can see me as a person, take my reported symptoms seriously – even if they can’t measure them! – and use careful, scientific approaches to diagnose and treat any issues that arise. That doesn’t seem to be an approach supported by our health system at all. Ten to fifteen minutes for a standard GP appointment is not enough for the GP to tackle anything complex, or even to explore different explanations for the patient’s concerns.
This health system of ours, with specialities carefully sectioned off, as though the cardiovascular system and, say, the musculoskeletal system are independent entities with no influence on each other, is badly, dangerously broken. From the heart to the gut, the teeth to your toes, the body is a single system with complex, interwoven needs that are poorly served by siloed compartmentalism that looks at a single organ in isolation.
When a specialist can declare a patient “fine” because they do not have that specialist’s particular issue, regardless of the patient’s quality of life or the possibility of future damage from undiagnosed conditions, we clearly have a problem.
When a specialist can ignore the evidence in front of him in favour of his own arrogant assumptions, and there is no-one to call him out on it, we clearly have a problem.
When patients with complex, chronic health conditions must repeatedly self diagnose before they can make progress, we clearly have a problem!
As Anna Spargo-Ryan, author of A Kind of Magic, puts it:
“This is true of all chronic illness; I have had to fight desperately just to be understood well enough to be pointed in the right direction.
When people with complex mental illness aren’t able to self-advocate, they die.“
I can’t help wondering how many people are quietly suffering, having been misdiagnosed, or told they were fine when they clearly were not, because they mistakenly trust in a system that is not fit for purpose. Too many patients, especially women, are told they just need to relax, stop working so hard, or just stop fretting.
We need to demand better of our health system. Our GPs need time to listen, to pay attention, to research, and to see the whole patient. Our specialists need to be trained to see the whole patient, not just the particular condition they specialise in, and they need to be trained to be sceptical of their own results – to test their theories, and to query their assumptions. Doctors are human, and they make mistakes, but the system assumes they are perfect. There are no checks and balances. No-one to coordinate and challenge patient care except the patients themselves, who are very rarely qualified to take that role, particularly while unwell!
Above all, as patients, we need a health system that hears us, takes us seriously, and concerns itself with our quality of life, rather than merely with our test results.