Kamal Ghorui
Neurologist and seizure expert, Suzanne O’Sullivan , often sees patients who already have three, four, five preexisting diagnoses, which don’t yet have a cure. In a medical world racing pell-mell towards fancy new tests, she finds it very important to ask the patient, ‘What has happened to you?’ That’s different from, ‘What is wrong with you?’
Her book, The Age of Diagnosis: Sickness, Health and Why Modern Medicine Has Gone Too Far , reminds us that we are all as different on the inside as we are on the outside. Every genetic test and every MRI can show ‘abnormalities’. Such capabilities can make it difficult for anybody at any age, to consider themselves perfectly healthy.
Plus, disease definitions keep expanding. When in 2003, American Diabetes Association lowered the threshold for normal glucose level in a fasting person from 6.1 millimoles per litre to 5.6, it increased the number of prediabetics twoto threefold. Drawing in milder cases is an ‘overdiagnosis’ problem, when higher rates of disease detection don’t deliver improvements in longterm health.
A predictive diagnosis is actually only a warning about the future, which, however, is not guaranteed. O’Sullivan underlines that even cancer screening programmes do not necessarily reduce either cancer deaths or overall mortality. All they do is assume that all cancers will grow malignantly and threaten life, so treat each of them equally aggressively.
Basically, although not all cancer cells grow to cause illness and death, all of them cause the same fear. One thing that will help is giving small errant cells found on screening, which show no definite evidence of growth, a different name than the one we have given to fast-growing, symptomatic tumours.
There is also a social contagion element. After Angelina Jolie revealed she carried a BRCA1 variant and had undergone risk-reducing breast surgery, this genetic test and surgery went up worldwide. And the term ‘long Covid’ was actually coined by someone on Twitter.
The danger that O’Sullivan’s pointing to is that when the number of people with a diagnosis rises dramatically, drawing in those with even the mildest form of a condition, it can trivialise the disorder for those most severely affected, and divert resources from those most in need. Not to mention overshadowing the life of the overdiagnosed, with blood tests, doctors’ appointments, and a needless sense of losing control over their destiny.
Today, one in 36 American children has autism, dramatically up from one in 150 two decades ago. There is no blood test or scan for this diagnosis. It’s based entirely on societal agreement on what ‘normal’ behaviour looks like, with Elon Musk and Anthony Hopkins now included on the autism spectrum. But if the purpose of diagnosis is to predict what an individual needs, that’s no longer possible.
Patients in need of heavy care, like non-verbal, 20-year-old Elijah end up being neglected. When he has a fullon meltdown on a bus, his mother tells the staring passengers, “This is what autism looks like, not what you saw on the telly last night!” They look away.
The word patient, O’Sullivan reminds us, is drawn from the Latin verb pati , which means to suffer. She says it’s time to turn the dial back on making nondiseases into diseases. Ageing, poor sleep, sex drive difficulties, menopause, unhappiness, everything is not a problem that medicine will cure. Many of these are just ordinary life experiences.
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