Coming to Terms With Mental Health Labels

Do people have mental health illnesses, diseases, disorders, or conditions?

Formerly, social stigma and personal shame clipped the wings of many who wanted to discuss their mental health experiences. Now people flock to the internet to share stories of living with mental health conditions. But what terms should reporters, therapists, doctors, or anyone else use to discuss other people’s depression, ADHD, schizophrenia, or autism? Are they diseases? Disorders? Conditions? Something else entirely? How do we write and speak with accuracy, respect and sensitivity on these topics?

We all want to use the proper words. Good communication depends upon it. The editor of Wise & Well, Robert Roy Britt, asked me to suggest some guidelines regarding the terms we use when writing about mental health. As a psychiatrist and author, I welcomed the chance to share my thoughts.

In a world where the internet seems to encourage divisions and tribalism, words can hurt. Many people don’t like to have their mental states or behaviors described as illnesses, diseases, or disorders. In a world where individuals are seeking new relationships with the earth, their bodies, and their communities, words can empower and unite. Words matter.

Humans are diverse. Some even question whether we should affix labels to any of the pervasive differences in how people think, behave and feel. We categorize what surrounds us in our incredibly detailed and cluttered world in order to make informed decisions about how to react. Labeling divergent patterns of behavior can help both individuals and society when those patterns cause dysfunction or harm.

I’ve seen how diagnostic labels that summarize a meaningful collection of linked symptoms can enhance my understanding of a patient. These labels can also aid individuals in comprehending their thoughts, feelings, and actions, as well as nourishing a sense of belonging. Our diagnoses also furnish general predictions about future behaviors, and can steer us towards appropriate treatments.

But we need to make sure that the terms we use don’t cause individuals or groups harm. We don’t want to use labels liable to cause injury.

Sorting things out

Numerous networks in the human brain help us identify and categorize objects in our environment. As a teenage birdwatcher I spent hours studying bird guides with their colorful plates of the two dozen species of warblers that might appear each spring, learning the patterns of their plumage, and their names.

A half-century ago, only little old ladies or other kooks watched birds. Now it’s chic to watch chicks. “Birdwatcher” is no longer a slur. What societies approve of changes. Language changes.

Birdwatching honed my attention to detail. It enhanced my ability to extract and extrapolate from those small cues to identify and categorize what I saw. This came in handy in medical school. When the attending physician interviewed an elderly patient in front of a score of first-year students, I was the only one who picked out that the woman had “pseudo dementia” rather than dementia. The crucial difference meant that she had a treatable presentation of depression, rather than an incurable declining mental process.

Years later, in my own practice, I urged a new patient to get a brain scan, after he complained of a new symptom of signing his checks just below the line, rather than in proper alignment. His general practitioner and a neurologist had both dismissed this “focal neurologic sign,” buried as it was under a mountain of worries about sadness, agitation, lethargy, and poor sleep. The scan revealed a brain tumor that we all agreed was at least as important to treat as his depression and anxiety.

Making an accurate diagnosis can be critically important in psychiatry. If we miss what’s going on, or give it the wrong label, it can be deadly. What we call a condition matters. I’ve written extensively about unentangling ADHD from narcissism, or borderline personality disorder, or autism. If you have the wrong label, you’re likely to misconstrue what is motivating the individual in a given situation, make wrong predictions about future events, and may apply treatments that aren’t likely to work.

Although careful diagnosis in psychiatry is important, our current definitions and diagnoses are imperfect. Many individuals don’t fold neatly into the boxes we have crafted.

How organized psychiatry calls it

The American Psychiatric Association (APA) publishes the Diagnostic and Statistical Manual of Mental Disorders (DSM), which many refer to as the bible of psychiatric diagnosis. Rather than a bible, the DSM is an atlas, a revisable collection of guidelines for mapping out our current understanding of the boundaries between different mental health conditions. All of the conditions listed in the DSM are disorders or diseases.

The DSM defines disorders as an individual’s pervasive patterns of behavior, thoughts or feelings, that differ from what is normal and accepted by their cultural group, and that result in either dysfunction, harm, or distress. The term disease implies that we understand the underlying biological origins of a distinct condition, as in Alzheimer’s Disease, or Huntington’s Disease. Very often, once a mental health disorder becomes a disease, it slides away from psychiatrists into the purview of neurologists and other physicians.

So according to organized psychiatry, depression, autism, and ADHD would all be termed disorders.

Psychiatry aspires to remain in the field of medicine, and most other medical specialties have well-defined, sharp-bordered diseases and disorders to treat. Furthermore, the insurance-industry-driven business of medicine requires diagnoses of disorders and diseases for billing. Psychiatrists fear that if they don’t have disorders to treat, and have only conditions, they might not receive reimbursement for treatment. An argument for keeping “gender dysphoria” in the DSM is to guarantee medical coverage for those desiring gender transition hormonal treatment or surgery, for example.

Alternatives to diseased or disordered

However, there is also a long history, even within the field, of objecting to the medicalization of mental health. Psychiatrist Thomas Szasz’s 1961 book, The Myth of Mental Illness decried using the terms illness, disease or disorder to describe mental health conditions. He felt that science had revealed at best only tenuous connections between problems of the brain and these behaviors. He disapproved of considering social deviance as medical illness.

Those involved with revising the DSM acknowledge the challenges of sorting out what should be considered legal or ethical problems, and what might be genuine psychiatric disorders. Most often, they justify defining psychiatric disorders when we can find some indications of group differences in brain functioning between those with the diagnosis and those without, and when the differences result in either some loss of behavioral function (i.e. impaired ability to keep a job) or result in harm (i.e. increased risk of premature death) or significant distress.

Evolutionary psychologists believe that to the extent that identifiable collections of unusual behavioral, emotional, and cognitive symptoms exist, they are the result of our genetic heritage. They feel it is both more accurate and more helpful to acknowledge that behaviors and emotional states that were adaptive to humans in the past may manifest in the present in ways that are disruptive or distressing. But rather than viewing them as mental illnesses, these are part of what makes us human. From this perspective, treatment involves eliciting responses that are better adapted to the immediate circumstances.

Patient groups have increasingly rebelled against the pathologizing terms “disease” and “disorder.” Some are more amenable to the term “condition,” which is the term I have gravitated to over the last five years.

I’ve been conditioned into viewing “condition” as more purely descriptive and less derogatory. Many members of the autistic community use the term neuro-atypical to acknowledge that their brain circuitry and resulting behavior may differ from the mainstream, but we don’t have to view that as defective or deficient.

Some people attach idiosyncratic meanings to words. I had one patient who would rant every few months about a recurrent magazine ad for neurofeedback treatment of the “disease” of ADHD. He complained that ADHD couldn’t be a disease because it wasn’t contagious. He seemed immune to my repeated information that there were other types of diseases besides infectious diseases.

Identities change; it’s hard to keep terms straight

Some of the neat categories I learned as a teenage birdwatcher have been subverted. As genetic analyses became possible, starting in the 1980’s, some groupings thought to be one species were split into two. Others that appeared to be different species, were lumped together after it was shown they interbred so frequently that they couldn’t be considered separate. One of the greatest indignities was morphing the Myrtle and Audubon’s Warblers into the Yellow-rumped Warbler.

Prompted by greater awareness that Audubon, and other naturalists and benefactors, whose names were affixed to birds, had been slave owners or war criminals, the American Ornithologists’ Union (AOU) recently announced the pending removal of all human honorifics from bird names. Bird species shift. Bird names shift. Even the AOU ditched the anachronistic “union” years ago to become a society.

When I was born, I had a mental disease. When I was 12, I was cured — the APA removed homosexuality from the DSM. When I came out, years later, I was a homosexual. Over the years I evolved to be gay, and then queer.

A language for one is just a secret code. Language is always a dialogue.

My becoming queer made the whole world just slightly more accepting of the term, and the world’s slight engagement with the word made me a tiny bit more willing to adopt it.

Language evolves. Words change meaning, and what is socially acceptable changes with time.

A few years back, my friend’s child and another teen were honored at a high school ceremony. My friend was irate that the principal mentioned the other kid’s gender only twice in the introduction, but more than a dozen times misgendered her trans child’s pronouns. At the end of my friend’s tirade, I agreed that it was horrible to listen to someone, who should have known better, repeatedly getting it wrong.But I pointed out that the principal had known this youth for a decade before their transition. It’s hard when you’ve used one set of labels for so long to make a switch. I urged my friend to soften her harsh assessment — because she herself, in telling the story, had actually misgendered her own child at least 10 times!

Language shapes how we see and feel about the world. Language shapes how we see and feel about ourselves.

I’ve been to ADHD group meetings where individuals insisted that they didn’t “have” ADHD but “were” ADHD. Part of viewing ADHD as a condition made it harder to accept this viewpoint. Even when, I myself, feel that I am gay, not that I have gayness. Whether I have it or am it, it is part of my identity, how I may differ from the mainstream, and resemble others who share that difference.

Going out with style

I’m probably not the style of guy to create a style guide for my editor. By the way I’ve essayed to answer his question, I’m more of an essayist. And maybe I should even shirk the SA-ist label. College Student Associations have proposed abandoning that title because SA also refers to “sexual assault” or to the “Sturmabteilung”, the paramilitary group that abetted Hitler’s rise to power. So rather than being a grammar Nazi, here are my suggestions regarding terms to use for mental health discussions:

You’re not going to make everyone happy with your choice of words. So remind yourself of your own values, your own motivation for writing, and make choices that align with those.

Respect individuals who belong to groups that you are describing, and listen to the terms they use.

If you’re writing for psychiatric journals, at this point in time, stick with the terms disorder or disease.

If you’re writing for a mainstream audience, avoid disease, disorder, or illness. “Condition” is generally more neutral and acceptable. Consider “neuro-atypical” as an option.

Rather than minority use the term minoritized. Mental health and race are at least as much social constructs as biological. Minoritized accurately frames that it is not innate group differences that separate us, but rather how those with power treat those with less that actively shapes our social contract.

Words matter. But they are just words, and time will change them, and us.