“Pathological: The True Story of Six Misdiagnoses”

I recently read Pathological: The True Story of Six Misdiagnoses by Sarah Fay. It was…not what I was expecting, and I have mixed feelings about it.

Before we dive in: I recognize that mental health and mental illness are emotionally charged topics, and, in our society, politically charged ones, too. I also recognize that they’re complex topics. There is no one-size-fits-all approach or philosophy. I think there’s widespread consensus that we need a paradigm shift when it comes to mental health and mental illness, and many different ideas about what that shift should be and how that shift should happen.

I don’t have all the answers. Or any of them! I have my thoughts and my feelings and my opinions, which are informed by my experiences, which are informed by my unique combination of privileges, accesses, and opportunities. Some people will share my perspective, and some people will not. That’s okay!

There are many bits in this book that I think are informative and valuable, and there are some takes with which I disagree. I touch on a few of these takes below, and focus mostly on one.

Alright then. Shall we? Let’s shall.

A copy of the book "Pathological: The True Story of Six Misdiagnoses" by Sarah Fay is positioned on a book cart so that the front of the book is visible. The background of the cover is dark purple. The title of the book and the author's name are in tall, block letters, colored, from left to right, pink to blue. The subtitle is white and in a handwritten font, across the center of the book, between the title and the author's name.

Ostensibly, this book is a memoir about the author’s experience of being misdiagnosed over the years with six separate DSM diagnoses: anorexia, major depressive disorder, anxiety disorder, ADHD, OCD, and bipolar disorder.

This book is memoir in the loosest sense of the word. The author frequently references her personal experience, but there’s no introspection, reflection, nuance, or critical self-analysis that one expects from memoir, and no character development beyond the superficial (really, the only character “development” is the author ages, as one does in accordance with the linear progression of time). The author comes off as self-centered—not self-aware—in a way that’s frustrating (sometimes infuriating) and uncomfortable.

What this book actually is, is a history and critique—a rebuke, really—of the DSM. Many people know that the DSM, or the Diagnostic and Statistical Manual, is psychiatry’s “bible” and what clinicians use to diagnose mental illness. What many people don’t know, and what Pathological discusses, is that while the DSM has been branded as a definitive and scientifically sound document, it’s not. It has a problematic history, and remains a problematic—and scientifically unsound—document.

The main argument of the book is: Stop pathologizing normal human behavior, activities, and experiences. Which: YES! I agree with this. Emphatically. I understand that the DSM has a problematic history, and I agree that it remains a problematic document. I agree that there needs to be a paradigm shift when it comes to how we think and talk about, and approach, mental health and mental illness.

Where the author loses me is making the leap from “the DSM is a problematic document” to “not a single diagnosis in the DSM is real and its diagnoses aren’t helpful.” 

She makes this leap by staying stuck on only the scientific definition of the word “valid.” To Fay, all DSM diagnoses—with the exception of dementia and perhaps schizophrenia (her caveats)—are “hypothetical” and “opinions, not facts.”

I think that this is an extremely problematic take.

Using the scientific definition of “valid,” DSM diagnoses aren’t “real” in that they aren’t pathological. Meaning, Fay clarifies, they’re not medical disease or illness; there is no blood test or brain scan or other physical diagnostic exam that can conclusively diagnose anything in the DSM (with the author’s two caveats, noted above).

Okay. I understand that using this definition of “valid,” no DSM diagnosis is “valid” because no DSM diagnosis is pathological. And, per a previous paragraph, I agree that we should’t pathologize normal human behaviors, activities, and experiences. I don’t agree that an experience not being pathological means that it’s not real. And I don’t agree that grouping experiences using common language is unhelpful.

An experience does not need to be observable on a physical diagnostic exam to be “real” or “valid” in the non-scientific meanings of those words. These experiences are very real for the people having them, and they have an impact—often a significant, if not defining, one—on a person’s life. And in this ableist-ass economy, that impact is usually a negative one.

Let’s take autism as an example. I’m autistic. Or, using the pathologized language of the DSM, I have Autistic Spectrum Disorder (autism isn’t a disorder or a deficiency, it’s a difference). There’s no blood test or brain scan—or other diagnostic imaging or lab—that can conclusively confirm, or “diagnose,” autism. Because being autistic isn’t an illness or disease. It’s not pathological. That autism can’t be definitely measured by and irrefutably proven using a physical diagnostic exam doesn’t mean my experience of being autistic isn’t valid or real. Same goes for the other DSM diagnoses. To argue otherwise is hurtful and harmful. That’s called gaslighting. Gaslighting is abuse. Abuse can cause trauma.

DSM diagnoses are labels. Sometimes, labels can be limiting. Often, especially in the context of understanding who you are, and extra especially in the context of invisible and intangible aspects of identity, they’re incredibly useful. Spend some time scrolling through #ActuallyAutistic, #DisabilityTwitter, and #NEISVoid on Twitter and you’ll see how powerful having language for your experience can be.

Pathologization aside, DSM diagnoses are life-changing, even life-saving, for many because those diagnoses—those labels—give people language, context, community, and permission. Receiving my DSM diagnoses was the single-most affirming and empowering experience of my life (to date, and pathologization aside). They came with stigma and stereotype, sure. They also gave me the four things I mentioned above: language, context, community, and permission.

Language to describe my experiences.

Context for why I have the experiences that I have.

Community with other people who have similar or same experiences.

Permission to stop masking, to unlearn ableist attitudes, to cut myself a fucking break, to be me.

Doing away with—or refusing/rejecting—DSM diagnoses, as the author suggests, and indeed does herself, means doing away with those labels and the affirming and empowering—and sometimes life-saving—benefits they can offer.

Also, can we just take a moment to talk about the irony of the author writing an entire-ass book arguing that we should stop pathologizing normal human behavior, activities, and experiences, and then using outdated and pathologizing language throughout. LOL!

Not once did Fay make an effort to reframe pathologizing terms with less loaded and more neutral, understanding, and inclusive language. She doesn’t even address it in passing. It’s like the idea simply never occurred to her. Wild.

Reframing pathologizing language is easy. SO easy.

We can say “co-occurs” instead of “comorbidity.”

We can say “traits” or “experiences” instead of “symptoms.”

We can say “difference” instead of “deficiency.”

People can be “supported” and “accommodated” instead of “treated” or “managed.”

Fay knows language is important. She must. Her whole book is framed using punctuation as a device to illustrate exactly this. If punctuation matters, so too must the words it punctuates. And the author—A WRITER, AKA A PERSON WHOSE WHOLE ENTIRE JOB IS LANGUAGE—obviously understands this. That she neglects to acknowledge or elaborate on it is, in my personal, unsolicited, and correct opinion: deeply irresponsible.

If your goal is to stop pathologizing non-pathological things, one of the easiest and immediate ways you can help to do this is to change the language you use when writing about said things. It’s, like, incredibly fucking obvious that using pathologizing language to talk about non-pathological experiences…perpetuates the pathologization of said non-patohlogical experiences, no?

It’s also wild/frustrating to me that Fay fails to discuss—or even acknowledge—one: that health is holistic and intersectional, and two: the ways society and our environment can intersect with and impact our health. We can’t talk about mental health without also talking about other aspects of health, like physical and emotional health. Nor can we talk about any aspect of health without acknowledging that every aspect of our existence influences every aspect of our health.

To her credit, Fay does mention the medical model of mental illness. To her discredit, she does so only once—in passing and with no explanation or elaboration, 213 pages in—and she doesn’t mention or explain the social model of mental illness at all.

Essentially, the medical model says “the problem is you and your brain and/or body.” The social model says “the problem is society/your environment.” Obviously this is a very reductive and overly simplified description of these models. Please do your own research. This paper from Andrew J. Hogan gives a good overview of the history of the medical and social models. You might find it a helpful place to start.

To her credit, Fay does discuss the Big Pharma aspect of the Mental Health Industrial Complex. To her discredit, she doesn’t acknowledge or discuss capitalism’s role in mental health beyond that. There’s seemingly no awareness on her part of how our capitalist society contributes to (creates?) and reinforces/perpetuates the mental un-wellness that it pathologizes and then packages and sells to us as being a result of our supposedly inherently faulty brains, without the slightest consideration for the ways the shit-ass social conditions and contexts in which we live and seek care affect our health.

To her credit, Fay does discuss off-labeling and over-prescribing, and the very real problems that too many people with too little education and training are permitted to diagnose using the DSM, and many people doing the diagnosing are misdiagnosing (lots of overlap between those last two things). I don’t think she digs as deeply on these last two things as she could have. There’s a lot of talk that it’s happening, and very little talk about why it might be happening. And certainly no talk about ways we might approach change.

I’m also confused by her suggestion to eliminate spectra, and I don’t think she adequately acknowledges her privilege, or the impact that gender, sexual orientation, race, and/or socioeconomic status in particular have on clinicians’ tendency to pathologize peoples’ behavior and experiences. The few mentions she makes of these things feel very superficial, contrived, and CYA-y.

As I read, I kept waiting for Fay to disclose her “real” diagnosis. Spoiler: That never happened. There is no neat ending. Which: fine. I don’t need a neat ending. I do like a cohesive and coherent one, and I don’t feel like I got that from this book. At the end of the book (literally), what we get from Fay is her rejecting therapy and all her diagnoses. She waits to do this until the epilogue.

“When I stopped labeling and talking to myself as a sick person, I no longer was one,” she writes 250 entire pages in. “I reject a diagnosis because none has been proven, but I have or had a mental illness—broadly and without definition,” she continues two pages later.

I have mixed feelings on this. Part of me feels like this is an extremely privileged decision that gives off very toxic positivity “denial disguised as ‘the power of positive thinking'” energy. Maybe it’s her delivery, though, not her message. Part of me gets it. Over the years I’ve had therapists insist—though not formally diagnose—that I was depressed, and “suffering” from PTSD. I knew in my bones that neither of these diagnoses fit—so I rejected the suggestion, and, eventually, found new therapists (a very privileged move).

I don’t know. To me, Fay sounds angry, perhaps scared and alone, and full of internalized ableism. And I think those things overpower the main message of her book.

(Honestly, I was waiting for Fay to reveal that she’s autistic. Each of the six DSM diagnoses that she outlines in the book either commonly co-occur with autism, or are commonly misdiagnosed before a person learns that they’re autistic. And the way she talks about her life experiences, both past and present, sound like so many other experiences that autistic people describe having.

I cannot stress this enough: Although it’s included in the DSM, autism is not a mental health condition/illness. Autistic people often experience adverse mental health conditions/illness as a result of living in an unaccepting and ableist society, but autism itself is not a mental health condition/illness.

I recognize that the phrase “mental illness” is…pathologizing. As are the words “diagnosis” and “diagnoses.” I also recognize that it’s the language that we have right now, to best convey the significance of many peoples’ experiences.)

Overall, I think the book is worth reading or listening to. While Fay fails to acknowledge or discuss many aspects of her argument that I think are crucial to the conversation she’s trying to have, she does make many excellent points about a few things. The book is well-researched, and the information she provides re: the history and usage of the DSM is especially important and valuable—albeit devoid of critical thinking or meaningful calls for action. Plus, there are things she discusses in the book that I’ve not touched on at all here. Respectfully, you should form your own opinion about the book by reading the book, not this post.

*

Fay uses punctuation as a device to frame the argument that language (or, I guess, punctuation) matters. It’s an interesting and fun choice. Given my love for language and history, I’m surprised it didn’t work for me.

Two books about the history of punctation that I’ve read and love and enthusiastically recommend to my fellow word nerds:

Semicolon: The Past, Present, and Future of a Misunderstood Mark by Cecelia Watson

Shady Characters: The Secret Life of Punctuation, Symbols & Other Typographical Marks by Keith Houston

While we’re at it, a rec for a book about the dictionary and how—and why and when—words end up in it:

Word by Word: The Secret Life of Dictionaries by Kory Stamper

And two books that are, broadly, about mental health, and that I think offer a more nuanced, responsible, and compassionate take on such a complex topic:

Divergent Mind: Thriving in a World That Wasn’t Designed for You by Jenara Nerenberg

The Collected Schizophrenias: Essays by Esmé Weijun Wang

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