A sober diagnosis

Neurologist Suzanne O’Sullivan brings decades of experience working with hard-to-diagnose patients to her iconoclastic book The Age of Diagnosis (Thesis, 320 pp.). Her message: Our fascination with medical labels might be hurting us more than it’s helping.

O’Sullivan uses interviews and medical studies to examine the clinical practices for a host of conditions and diseases, including Huntington’s, Lyme, cancer, autism, and ADHD. She asks whether getting a medical label actually helps the people suffering, and the evidence, she argues, suggests often it does not.

Huntington’s disease provides us with an interesting case study. Genetic tests can tell with certainty whether someone will develop the disease, but since there’s no treatment, many at-risk individuals opt out of screenings. For many, ignorance of future suffering increases quality of life in the present.

O’Sullivan takes this principle and applies it to other conditions—most of which have seen exponential increases of diagnoses in the last few decades. The medical industry believes that earlier detection and expansive labels that include milder cases will lead to better outcomes, but O’Sullivan takes a contrarian stance, arguing that overdiagnosis hasn’t improved long-term health measures.

The diagnostic process is much more subjective than most readers will expect, but it’s important to distinguish between “misdiagnosis” and “overdiagnosis.” Misdiagnosis is an incorrect diagnosis, while overdiagnosis is one that doesn’t help and, in fact, might harm the patient.

One of the reasons to avoid certain medical labels is the nocebo effect, the opposite of placebo. Sometimes when patients get a diagnosis, they begin to exhibit typical symptoms of the condition they’ve been labeled with, even though they weren’t experiencing them before. This psychosomatic connection between labeled identity and how individuals perceive and experience health should give us pause.

While some conditions have testable underlying pathologies, the conditions that have seen the greatest increases in diagnoses do not. For example, “The diagnosis [for autism] depends entirely on a societal agreement on what normal behavior should look like,” writes O’Sullivan. She’s afraid that the healthcare industry has begun to medicalize normal variations of the human experience, giving patients tyrannical labels that explain away problems while simultaneously robbing them of hope for relief once the label becomes part of their identity.