Health and Wellbeing in the Age of Diagnosis


In this modern world, sometimes it seems that everyone has “something,” and many of these conditions are relatively “new” and their incidence is increasing.  Leading diagnoses from the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), include ADHD, autism, depression, and anxiety.  Conditions that have become more common in recent years that have no primary entry in DSM-5 include asthma, pre-diabetes/diabetes, hypertension, hypercholesterolemia, cancer, and POTS (Postural Orthostatic Tachycardia Syndrome).  People very often present with a suite of these unrelated conditions.

This means that (1) we are less mentally and physically healthy than or parents and grandparents and (2) that doctors are probably much better now at recognizing medical problems and identifying people who need treatment.  Or it could be (3) that individual differences in personality and physiology have become firm diagnoses and that normal differences are being pathologized.  My first thought that the third possibility is also correct crystallized shortly after I began to leave the world of basic research and began tutoring medical students and became a member of the Admissions Committee that chose them.  One of the attributes considered at that time was whether an applicant is an introvert or an extrovert.  I was the new person on the committee but I asked why that mattered.  I pointed out that a medical student can be an introvert or an extrovert, but s/he will learn to be direct and straightforward with patients and meet them where they are, eventually as a good physician.  “Extrovert” and “introvert” were deleted from the “Attributes” section of the evaluation form in the next cycle.  This discussion led me directly to Shyness: How Normal Behavior Became a Sickness by Christopher Lane. [1]  Shyness is a perfectly normal human behavior.

Dr. Suzanne O’Sullivan has covered this from a broader perspective as a neurologist in her intriguing book, The Age of Diagnosis: How Our Obsession with Medical Labels is Making Us Sicker, which was published in March 2025.  She begins without equivocation:

Importantly, overmedicalization and overdiagnosis are not just things that the medical community are doing to the unsuspecting public.  The pathologising of distress and the messy truth of life through biology, is a scientific and a social trend.  If we do indeed have an overdiagnosis crisis, how is society’s expectation of success and perfection playing into that?  We are encouraged to believe anything we want should be possible for us, but that cannot always be true.  I hear that medical diagnosis has become something that is used to reframe our perceived failings.  An unrealistic expectation of an unachievable level of physical and psychological might be turning us into patients and robbing us of control over our own destiny. (italics in original)

In writing this book I explore how modern medicine is redrawing boundaries between sickness and health and what impact it is having on our lives.  I have grown very concerned that we are turning increasing numbers of healthy people into patients with insufficient gains and unmeasured harms.  Diagnosis is seen as the key that opens the door to so much that we long for – an explanation, the potential for recovery, support, a tribe of fellow sufferers – but there  are darker things behind that door too that are not always given proper consideration.

“Patient” is derived from the Latin “pati,” which means “to suffer.”  Unfortunately, in many cases the capacity of modern medicine to diagnose has not led to a consequent ability to cure, “meaning people are living with a diagnosis for longer, but not necessarily living longer as a result…(for example, with) the fate of an early diagnosis of dementia that cannot be changed.”

Following up on this directly, Dr. O’Sullivan’s first topic is Huntingtin’s Disease (HD).  HD is an autosomal dominant condition, which means that one copy of the mutant huntingtin protein means the person will get HD, with only “when” being unknowable [2].  The question is whether the diagnosis of inevitable disease is always indicated.  Since a carrier has a 50% chance of passing the disease to his or her children, this is obviously an important thing to know.  But if no children are anticipated should we expect a person who has a parent with HD to want to find out?  Good question.  And it turns out that of those at risk due to having a parent with HD, about 90% who consult a genetic counselor eventually decline the test for the mutant gene, with a “common reason not to test is the realization that knowledge cannot be unlearned.”  Although research on HD continues, there seems to be no light at the end of that tunnel.  Yet.

Lyme Disease (LD) and Long Covid come next.  Both are very real diseases, and Dr. O’Sullivan covers their history very well.  The agent Lyme disease is the bacterium Borrelia burgdorfii, which is transmitted by the deer tick.  LD was recognized only in the mid-1970s through the work of Polly Murray, who had been battling the disease with her family and neighbors in and around Lyme, Connecticut, since the 1950s.  The larger question of Lyme disease is whether something called chronic Lyme disease (CLD) is real.  Given that Polly Murray suffered from the disease for nearly twenty years before it was formally recognized, this answer must be yes.  And biology has at least one answer.

Borrelia burgdorfii is a spirochete, as is the bacterium that causes syphilis (Treponema pallidum).  Spirochetes are insidious pathogens, and they can be refractory to antibiotics.  They cause multi-system disease.  Is there a subculture (patients and physicians) that is fixated on CLD, in which case CLD may also be a psychosomatic disease? [3]  Dr. O’Sullivan makes a good case.  But this does not mean Lyme disease is not a real disease caused by an identifiable pathogen.  The term “Long Covid” was introduced on Twitter in May 2020 during the first months of the pandemic.  A case is made that Long Covid is a psychosomatic disease.  While this is also convincing, it should be remembered that SARS-CoV-2 is also an insidious pathogen that causes serious, long-lasting multifactorial disease, despite an associated vocal subculture similar to that associated with CLD.

The French neurologist and anthropologist Paul Broca traced breast cancer through four generations of his wife’s family after she was diagnosed at a young age.  It has been largely forgotten that he was the first physician to recognize that breast cancer can run in families (the pedigree in this pdf download is worth a look)  This was long before the rediscovery of Mendelian genetics in 1900, so a mechanism was not available.  We now understand the molecular basis of familial breast cancer (along with many others) after the discovery of mutations in BRCA1 and BRCA2 that predispose women carrying these mutations to develop breast and ovarian cancer.  This has led to pre-diagnosis that often leads to prophylactic surgery for good and sufficient reason.  This has undoubtedly saved many women from a certain future, but predictive diagnoses are just only that.  Early estimates of likelihood of BRCA-related breast cancer were too high, and statistics apply to large numbers, not individuals.  However, genetic counselors are now able to provide better information.  Still, a recent metanalysis asked if overall mortality improved with screening:

The study included over 2 million people who have been screened for a range of cancers including prostate, breast, and bowel.  In the case of large bowel cancer, screening extended total lifespan by one hundred and ten days, but for all other cancers there was no evidence that finding early cancers on screening allowed people to live longer.

But again, statistics do not apply to individuals.  Thus, we all must make our best choice given current knowledge.  With these frank biological diseases, it would seem that the error should be on the side of action.  But contrary to popular belief, the correct choice cannot always be known in advance.  Sometimes that choice should be watchful waiting (e.g., prostate cancer) and sometimes other choices are indicated.  In her experience, Dr. O’Sullivan observed that “women who had risk-reduction surgery all complained that their surgeons didn’t seem to appreciate the gravity of what they were going through.”  This regrettable but not surprising.  It is probably caused by the overriding need to do something.

Autism has a long history in the DSM.  The signal fact that autism diagnoses have increased over the past twenty or thirty years is difficult to explain as anything other than expanded and more sophisticated definitions and better recognition of what is in reality a very broad spectrum of disorders.  Contrary to current American policy-based science, which is the modern form of Lysenkoism, there is no single “cause” of autism.  Vaccines have nothing to do with the condition.  The stories of the patients in The Age of Diagnosis are riveting, worth the read for themselves.  They range from the 24-year-old Poppy, to the nonverbal Elijah, who at 20 years old has the mental age of a 4-year-old.  Regarding Poppy, who has received little support from the National Health Service in the UK and is therefore unimpressed with NHS messaging on autism.  From Dr. O’Sullivan:

‘You’re not happy with the NHS message on autism?

‘Too much misinformation.’

‘For example?’

‘The function label for starters.  If you call someone high functioning it’s like you’re saying they’re not disabled enough.  And don’t call me a person with autism.  That sounds like I am carrying autism around in a bag.  I’m autistic…That’s how my brain works.  It’s part of who I am.  It’s not something that can be put down like a bag.’

Whether or not the increase in diagnoses of autism is “true” may be debatable.  What is not debatable is that people “on the so-called spectrum” are just people, some with greater challenges than others, with Elijah at the most challenged end of the spectrum.  As his mother put it to a busload when she was attempting to get him under control, “all the other passengers were staring at me…So I turned around and said, ‘This is what autism looks like, not what you saw on the telly last night.’”  Every person, not patient, with autism must be met where he or she is, if suffering is to be lessened.

ADHD is a tale unto itself.  It is most assuredly real but it also has a history.  It began with DSM-2 in 1968 as “hyperkinetic reaction in children (usually boys), described as a single line as distractibility and restlessness that went away in adolescence.”  In my elementary school in the 1960s, this would have been described by every one of my teachers as “boys being boys,” which is why we had two recess periods per day in good weather.  In DSM-3 (1980) the term attention deficit disorder (ADD) was introduced.  Hyperactivity was added in DSM-4 (1994) and the condition became ADHD.  DSM-5 describes ADHD “as a pattern of inattention or hyperactivity that interferes with social functioning or development.  The diagnosis requires that the difficulties be present before the age of twelve, that they are present in lots of settings, that they reduce the quality of social, academic, or occupational functioning.”  Mild, moderate, and severe ADHD seem to be in the mind of the patient and the eyes of the diagnostician.

A few crucial observations about ADHD from Dr. O’Sullivan:

The youngest children in a class have repeatedly been shown to be more likely to get an ADHD diagnosis that older children, which suggests that for some, immaturity may be being conflated with a neurodevelopmental problem.  There are also substantial differences in diagnostic rates with within single countries that are not easily explained by differences in culture or access to healthcare.  In Norway, where…healthcare…is readily available to all, diagnostic rates vary between 1% to more than 8% in different regions…14% of children in Mississippi…have ADHD, but only 5% in California.  This suggests that some practitioners are making substantially more diagnoses than others.

The frank truth of it is that despite decades of work, no biomedical research project has succeeded in finding any brain abnormality common to people with ADHD.  There are no biomarkers that allow behaviours exhibited by people with ADHD to be distinguished from other disorders or even from normal human experience.

Stimulants (e.g., Adderall and Ritalin) are first-line treatment for adults (who only recently have been diagnosable with ADHD), while in children they are reserved until educational and behavioural support have failed (debatable).  Among the working group advisers for the development of ADHD in the DSM-5, 78% disclosed links to drug companies as a potential conflict of interest (actual, not potential).  Pharmaceutical funding is also common in educational, professional, and consumer websites providing information on ADHD.  Drug companies also provide funding to patient advocacy groups and ADHD charities. (Where have we seen this before?)

There is little evidence that these drugs work as intended in adults.  But what about children diagnosed with ADHD?  ADHD can be viewed as an example of neurodiversity and that “our moods, concentration levels, social skills, creativity, all our personality traits lie on a continuum, affording us different strengths and weaknesses.  There is no right or wrong way to behave or feel and all ways of being should be embraced.”  Yes, but that is not how people in general look at this.  Neurodivergent implies its counterpoint, neurotypical, which describes a person “who is said to organise their thoughts and behave in a ‘typical’ way.”  Thus, people who are labeled neurodivergent can be and are often made to suffer in society, as in the case of Poppy.  This is not a trivial concomitant of the diagnosis and must be considered.

One of the more remarkable attributes of what could be called the ADHD Industrial Complex is the matter of accommodations, in which students with ADHD get extra time on exams, frequently in separate, quieter rooms, although the hundreds of exam rooms in my history have been very quiet (I did once have a friend reach back during an exam and grab my shaking foot that was distracting her, though; she had a point, as we and the proctor laughed about it later).  However, studies have shown that in populations diagnosed with ADHD, students receiving accommodations do not perform better than students who do not have accommodations.  And this seems to describe the situation with diagnosis creep of conditions such as ADHD and test anxiety (yes, students can get special treatment because they get nervous before exams).  From Dr. O’Sullivan:

A big problem with these sorts of accommodations is that they promise better school or work performance but don’t deliver.  They risk creating the expectation that extra support is essential.  If a student believes that they need support to do well, they may continue to think they need it going forward in life when actually they could have done just the same without it.  They will eventually meet a situation in which no special accommodations are available and when that happens a history of assuming they require extra help could set them up for failure.

Yes, they will.  In my current work this happens regularly.  And a distressing fraction of students who have been diagnosed with ADHD and cognate disorders continue to believe that their diagnosis is an excuse for not doing this or that, being on time, and completing their tasks in a responsible, workmanlike fashion.  But the world at large does not work that way.

It should also be noted that ADHD, as well as most other ostensible neurodevelopmental disorders used to have a “recovery identity (and in) the 1960s and 70s, the DSM described it as condition that went away in adolescence.”  No longer:

…ADHD is slowly being incorporated in the identities of many young people.  Some support groups discourage the attempt to overcome ADHD traits.  People are told to unmask and to share their ADHD selves with others.  But learning to control our moods, behaviour and impulses is part of growing up, whether one has ADHD or not.  We all become more socially competent, gain focus and are better able to cope through practice.  Encouraging young people to do otherwise may be well-intentioned but is potentially setting them up for non-recovery.  The rise of…ADHD presentations in adults may also undermine a young person’s expectation that their difficulties will disappear in time.  A growing population of adults have incorporated ADHD into their self-concept.  When a medical problem is part of a person’s identity, it becomes inescapable.

Finally, these words of wisdom for our scientistic, rather than scientific, overly confident era that must have a biological explanation for every disorder:

As it always happens when diagnostic inclusivity draws in milder cases, the negative impact of medicalisation… is inevitably ignored.  Medicalisation through biological theories and treatment with chemicals can also all too easily sideline essential social change.  There is lots of evidence pointing to life circumstances as major risk factors for mental health problems.  Adverse events in early life, family history of mental health problems, negative family environment, bullying, racism, social isolation and inequality are all risk factors for mental health problems.  They are also possible to change so maybe that is where our attention should be focussed.

(But) a consultation that ends with a prescription is a relatively easy one for a doctor.  It manages their own anxiety and makes them feel useful.  It is also easier for the patient…But chemical treatments come with side effects, like drowsiness, agitation, insomnia and sexual dysfunction…And while explanations that rely on internal biology might offer relief, they also risk robbing people of control over their own futures and distracting from the need for social change.

The book concludes by stating that “we need to adjust our expectation of constant good health because it’s turning us into an ageist society.”  Yes, we do.  As we must also resist creeping genetic determinism and its attendant semi-domesticated eugenics, along with the MAHA silliness from “longevity doctors,” some who believe that we should even work harder on abolishing death.  These are not serious people but their influence does serious damage.

The Age of Diagnosis is a deeply unsettling book in the good way.  It challenges our preconceptions of what health is and our default preferences – medicalization – for dealing with the uncertainties of life.  This book will at times undoubtedly elicit discomfort in everyone who reads it.  This is something we all should subject ourselves to on a regular basis, especially in our strange world.

Notes

[1] More recently Jonathan Haidt published The Anxious Generation, which we discussed here in 2024.  Both Lane and Haidt have their detractors, but each also takes a broader view that is seldom seen.  I was particularly interested in Shyness because as a child I could be bashful to the point of desired invisibility.  Few believe me now, but this is true and it was painful mentally and physically and still haunts me on occasion when I am speaking in public.  But like many, I grew out of it as I grew up and realized that I was not abnormal, just different.  It remains perilous to break Horowitz’s First Law (Joel Horowitz was my brilliant freshman sociology teacher): You must never generalize about you own necessarily limited experience.  But I don’t think mine is all that unusual.  In any case, the “Yes, we have a pill for that” strategy has not worked.

[2] HD tends arrive earlier in subsequent generations because of genetic anticipation.  When the mutant huntingtin gene is replicated, the defect (an abnormal amplification of a long sequence of the amino acid glutamine) gets longer and this leads to earlier symptoms.

[3] Psychosomatic illness is real to the patient, with objective, measurable symptoms.  Psychosomatic does not mean imaginary, but the psychosocial component is real.

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