Our need to define what ails us may do more harm than good but is fuelling the medical industry, a prominent neurologist claims.
It sounds like it’s going to be 300 pages of medical tough love, telling readers to harden up and stop grizzling. It’s actually a counterintuitive, common-sense book full of useful and easy-to-apply advice. The Age of Diagnosis, by Suzanne O’Sullivan, looks at overdiagnosis, self-diagnosis and other aspects of what we might call the diagnosis epidemic.
It questions such widely held beliefs as the existence of long Covid, the role of serotonin in treating depression, the increase in ADHD and autism, and even the value of regular medical tests where there are no symptoms.
O’Sullivan is an Irish neurologist based in London who specialises mainly in the treatment of epilepsy and psychosomatic disorders. That has led directly to her new book, which also has a lot to say about the dangers of overdiagnosis.
How did she get from there to here? “Because seizures are a common manifestation of psychosomatic disorders, a substantial number of people who come to my clinic actually have seizures that are psychosomatic,” she says.
One of her key points is that psychosomatic disorders – where patients experience physical symptoms for psychological reasons such as stress rather than medical conditions – are real. Psychosomatic pain is no less painful than any other kind.
“In my clinical practice, I deal with patients who have the absolute worst that psychosomatic illness has to offer,” she says. “I’m completely aware that a lot of people hear ‘psychosomatic’ and they hear, ‘Oh, you’re not really sick.’ That is absolutely a misunderstanding that needs to be corrected in the general public.”
So widespread is this prejudice that diagnoses of disorders as psychosomatic are often not given, “because it’s seen as a lesser diagnosis. A lot of people could be helped if we acknowledged psychosomatic disorders are both common and serious.”
This attitude has hampered the way in which long Covid, for instance, has been approached (see “Building a myth”).
“[The media] presented long Covid as an unequivocal pathological result of a viral infection. [A psychosomatic] cause wasn’t even touched on. People … could have got a lot of support from that idea, but it’s so stigmatised that people couldn’t even say it.”
For many years and many conditions, people with psychosomatic disorders couldn’t even get help. “I qualified as a doctor in 1991 and I’ve been a consultant since 2004, so between 1991 and 2004 I saw loads of people with psychosomatic disorders.”
In those cases, once a patient’s problem was seen as not neurological it was dismissed. Even though they were sick and disabled, they were discharged.
If your identity revolves around a specific medical diagnosis, then getting better threatens who you are.
That, at least, is changing. “This is an area of research now. There are loads of people working on this, and there are clinics for this, but I’m still concerned that it’s not working. Psychosomatic disorders are being given new names, like ‘functional disorders’. But some day, someone will say, ‘Oh, functional, that just means the same as psychosomatic.’ What we need to do is convince the general public that this is one of the commonest medical disorders. It is there, it’s unconsciously generated and, for some people, it is more serious than any disease.”
Naming something in order to deal with it can lead people to identify with it in a way that makes them resist any cure. “When you overly identify with a medical disorder, it focuses you on your symptoms. They become amplified by that attention. If your identity revolves around a specific medical diagnosis, then getting better threatens who you are.”
The nocebo effect comes into play: symptoms get worse if people believe an intervention will cause harm. “Labelling has a very strong nocebo effect. The effect isn’t terribly important to people at the severe end of the spectrum. It’s in that borderline zone where the disability isn’t very marked [that] the harms of labelling can outweigh the benefits of getting that label.”
At the same time, O’Sullivan says there are understandable reasons for accepting labels. “If the only way to get help in school for your child is by giving them a label, or the only way to go to your doctor and have it paid for by your insurers in countries that rely upon insurance for healthcare is to have a label, then you need labels.”
Which brings her to the likes of autism and ADHD. Those labels were created for a specific group of people who nobody would doubt needed them. Then they grew, and a sort of diagnosis creep has occurred. “And if we take those sort of difficulties at the milder end of the spectrum in the behavioural realm and use that label equally for both groups, we’re harming both those severely affected – who actually need the label – and those in the mild end of the spectrum by telling them their brains aren’t normal.”
Woolly definitions
So, what makes something a medical disorder and not any other kind? “The DSM [Diagnostic and Statistical Manual of Mental Disorders] says to have a diagnosis you must be impaired. That definition of impairment is so woolly, you might say, ‘Well, I’m impaired because I can’t speak in front of a large group of people.’ I think we need a better definition, so we can divide the people who have a medical disorder, who need medical help, from the people who perhaps live in a world that isn’t set up for them.”
O’Sullivan has previously criticised a psychologist who’d said that a patient who needed a lie down after going to the supermarket was suffering from an impairment.
“I would say no way is that impairment. I would say that to be impaired, you have to not be able to do things that any reasonable person might expect to do. If you just could not go to the supermarket, I might be willing to say that’s an impairment, but that’s the line.”
A definition is important so people who have difficulties and may need some support – perhaps some nutrition advice if they get worn out by a trip to the supermarket – can be distinguished from people who definitely need medical support because they can’t leave the house.
Overdiagnosis has increased the number of people wanting those resources. “At the moment, people who are very severely impaired are in queues with people who are having difficulties that they can easily overcome.”
It doesn’t sound like overdiagnosis is doing anyone any favours. But someone must be benefiting. O’Sullivan resists the politically easy explanation that big pharma and its cronies are behind it all. “Clearly, pharmaceutical companies benefit, and private doctors and private hospitals benefit. But also, in a non-financial way, researchers – scientists and doctors who set up services around these disorders – are also benefiting.”
Specialist researchers can’t function without people to research. “There’s a feeling that overdiagnosis is something that’s been done to us by people who are desperate to make money or careers out of us. That certainly happens, but I think that’s not what drove it in the first instance or why it’s still happening.”
The road to overdiagnosis has been paved with good intentions. “We’re terrified of underdiagnosis. If I tell somebody they don’t have something, and then it later proves they do have it, I get punished. We’ve also got a society that wants everything explained. If a medical theory comes forward that will provide answers, doctors will give it, because that’s a great consultation. So, I think the psychology of society and a fear of underdiagnosis drives it, and at the other end there’s a bunch of people waiting to profit from it.”
Serotonin & depression
Questioning and amending widely perceived beliefs is how science works, and O’Sullivan is highly sceptical of currently received wisdom around depression, low serotonin as the cause, and the usefulness of antidepressants.
“You hear people saying all the time, ‘Oh, low serotonin.’ And the low-serotonin theory has been very prevailing, but there was a big paper in Nature and there is growing evidence to suggest that low serotonin as a cause for depression is spurious, to say the least. Obviously, it’s the basis for many drug treatments for depression, and many people feel they’ve improved on those drugs, but there’s growing evidence now that the improvement might be largely the placebo effect.”
As the old joke has it, “The doctor’s put me on these placebos and I’ve never felt better.”
A lot of what we medicalise might just be life’s ups and downs. O’Sullivan advocates an attitude realignment. “I do think we expect a little bit too much of ourselves – this concept that the majority of your time you should be happy. Life is stressful.
“I want people not to worry about normal things that most people experience all of the time. This is a counterintuitive thing but mental health awareness campaigns, to some degree, may be making our mental health worse, because it’s ordering us to worry about feeling down. Most negative things pass, and the most important thing is to try not to medicalise and to give things time to pass, if you feel strong enough.”
That would leave medical space to deal with medical problems. “I’m not trying to say that people who have the label of neurodiversity or depression aren’t suffering or don’t need help. My stance is [asking], is this a medical problem? Because if it isn’t, calling it medical could be harmful.
“The world could perhaps be more mindful of those people. Some kids learn differently. Let’s accommodate that, [but] I don’t think we should accommodate that by calling it medical, because it gives a difficulty permanency in people’s lives.”
Catch-all screening
Catch it early and save a life. Early screening for cancer seems sensible – until you look at what the results have been.
“You’re treating more and more early cancers,” says O’Sullivan, “but you suddenly realise just as many people have late-stage cancers. A lot of us have abnormal cells that look like early cancer cells but are not the same as malignant cancer cells, because they’re never destined to grow to threaten life.”
Science can’t tell which abnormal cells will grow and which won’t, “so they’re all called cancer, and they’re all treated in the same way. But every screening programme will treat people who didn’t need to be treated.” People will opt for unnecessary mastectomies or chemotherapy.
Not that O’Sullivan is advocating ignoring results. Instead, “there are watchful waiting programmes for breast cancer and prostate cancer. You do not have to overreact immediately. You can wait a few months. You can have serial scans. Don’t panic when it happens.”
Online’s mental
Most people will be well aware that social media is behind a lot of the problems identified by O’Sullivan, especially in matters concerning young people. But most people have not had a proper look at the research.
“There’s a real assumption that a mental health crisis – especially in young people – is driven by social media use,” says O’Sullivan. “But the science doesn’t uphold that at all. Whatever studies have been done, for the most part, do not come to that conclusion. You will find studies that look at a niche and show that wanting likes, or certain things, can be amplified by social media use. But overall, for young people, the evidence that social media is actually worsening mental health is not strong, and there is evidence to suggest it makes no difference.”
On the contrary. “There’s probably a balancing act. I think of young people in my life. They learn dances. They learn how to cook. My niece paints beautifully. There’s also a lot of improved connectedness – during the pandemic in particular.”
Also, social media is here and it’s happening, so it needs to be handled. “You can’t put the genie back in the bottle. Young people are surrounded by dangers all the time, like cars, but we don’t ban them from roads. We teach them how to negotiate roads carefully.”
