30-07-2025
We're More Likely Than Ever to See Ourselves as Sick. Why?
In 1983, nearly a decade before the Human Genome Project was even started and two decades before it was completed, scientists mapped the chromosomal abnormality responsible for Huntington's disease.
The disease was then, as it is now, both incurable and intolerable: typically an inexorable descent into cognitive and neurological dysfunction, usually beginning in middle age and ending only after a long period of profound decline — often involuntary movements, followed by the inability to talk or communicate or, eventually, move.
When a predictive test was first introduced in 1986, it was expected that perhaps as many as three-quarters of those at risk would choose to take it to discover what lay ahead for them — to be relieved or to begin planning, but in either case resolving uncertain anxiety into a more concrete sense of medical fate.
Instead, the Irish neurologist Suzanne O'Sullivan writes in 'The Age of Diagnosis,' published this spring, roughly nine out of every 10 at-risk people offered the test around the world decline it — preferring to live with ignorance. Perhaps, she suggests, we'd all be better off if we followed their lead, embracing uncertainty and ambiguity rather than always rushing to diagnose every deviation from 'normal.' A collection of intimate case studies somewhat in the tradition of Oliver Sacks, 'The Age of Diagnosis' ranges widely, recounting the stories of patients reckoning not just with Huntington's but also with cancer and Lyme disease and long Covid. But it delivers its takeaway message boldly: that in our eagerness to help, we have grown too promiscuous in our impulse to pathologize.
For certain conditions, O'Sullivan suggests, you can tally the cost in excessive, sometimes counterproductive care: Reports have indicated that perhaps one-third of breast cancer treatments are unnecessary, that certain prostate-cancer screening programs have saved relatively few lives, and that what is now called 'prediabetes' may resolve itself without any intervention in nearly 60 percent of cases. In the realm of mental health, some clinicians and researchers worry that diagnosis can be 'self-fulfilling,' through what is technically called 'iatrogenic' risk: that the very fact of identifying a disorder can make patients feel less well, less capable, more burdened and less independent than when they walked into the doctor's office wondering what the hell was going on.
Some researchers, though, have emphasized the inverse phenomenon: that patients are relieved to have a name and feel empowered by a diagnosis, even if there isn't anything for them to do about it. And for me, 'The Age of Diagnosis' is too broad a polemic — given how many afflictions remain mysterious, how much suffering endures without a name, and how often we underdiagnose and undertreat even well-understood conditions. But the book very helpfully puts its finger on what is, I think, a key to understanding an awful lot of modern social panic.
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