What’s in a name? Diagnosis and Why we should care
Much of the field of mental health has been shrouded in mystery. While this is necessary for certain types of services, like assessment to be effective, when it comes to psychotherapy, I take issue with this approach. This is not a unique stance. Many therapists who practice from an anti-oppressive lens maintain this ethos. Growing beyond the limitations of the field’s origins requires that we therapists not act like the great and powerful Oz. After all, he did not have magic. He was just pulling levers behind a curtain.
When entrusting someone else with your or your child’s mental health treatment, it is important that you be able to distinguish a charlatan with a smoke machine from someone who is willing to tell you when they don’t know something and willing to be direct about the benefits, risks and alternatives to the treatment that they offer. Honesty, transparency and authenticity are integral to an approach that prioritizes your well-being in a field that historically centered the perspectives of some over others. Yet, we still have to navigate the system as it exists. I believe that starts with sharing knowledge about what goes on behind the curtain.
I used to joke that no one is more skeptical of the field of mental health than the people who know it very well. No where is this more true than concerning the suspicious origins of the diagnostic classification system. As the complicated figure Thomas Szass said, “Classifying thoughts, feelings and behaviors as diseases is a logical and semantic error, like classifying whale as fish.” This is not to dismiss the reality of human suffering that permeates our thoughts, feelings and behaviors. Rather, it’s to encourage us to take a beat and consider whether the dominant culture’s way of understanding suffering might actually be perpetuating it.
As someone who aspires to meet the bar of the responsible skeptic, I treat diagnosis as a pragmatically useful tool that is necessary in the world we live in, but one that does not capture everything about your circumstances or who you are. I had a professor once who described to me the origins of mental health diagnoses in a way that really drove this home for me, and I’d like to share it with you. I’ve taken some liberties with the description to make the story more easy to picture and hopefully a bit more entertaining than a first year graduate school class.
Origin Story of the DSM
Years ago, a bunch of old, white male psychiatrists sat around a table bumping elbows with each other. They wanted to find a way to communicate with one another that didn’t require them to give long, drawn out descriptions of human behavior like “this person has intrusive thoughts that they think make them a bad person. They feel compelled to halt those intrusive thoughts and believe that not attempting to do so would be irresponsible and harmful. Sometimes they use rituals to prevent the feared outcome from occurring.” That’s quite the mouthful. Totally impractical to say that whole thing every time they want to seek guidance from one another to make sure their clients receive good treatment.
And so, in an attempt to remedy the inefficiencies of such speech, it went something along the lines of this: “Hey, man, I see a lot of this thing. Do you see a lot of this thing? Yeah, you do? Let’s give it a name,” and so the beginnings of the diagnostic and statistical manual were born. In this example, this was essentially the baby naming ceremony for obsessive compulsive disorder (OCD).
Make no mistake that this story is certainly hyperbolic and dramatized. I do like a little flare and comedy when trying to take in complex ideas that fly in the face of everything we’ve been taught to believe. I share it with you like this to illustrate a seemingly simple but profound point: these labels originated as descriptions. They served an important function; to make it easier for providers to collaborate with one another, improve their treatment tools, and help people get access to care that fit their needs. But there were a couple problems with this apparent in the legacies of how we understand mental health and seek treatment today.
Dr. Simmons’s Beef with Diagnosis
Problem #1. Not everyone was aligned about the purpose of these labels and some purposes were very unscientific and very inhumane. Some of these creators had ideas that were distortedly informed by oppressive ideas of the day that gave credence to philosophies that did quite a lot of harm to certain groups of people. For really painful historical examples, consider drapetomania, hysteria, and homosexuality. Of course some communities would be skeptical of the mental health field when you consider these origins! Some modern public figures carry on this legacy today, pathologizing and dismissing human political behaviors today as illness that can be possessed (e.g. Trump Derangement Syndrome). The choice of what to give a label and what not to label continues to be an interesting phenomenon today in terms of how we understand each other and ourselves. This has many complicated, interwoven components that move across insurance, pharmaceuticals, research, treatment and advocacy. We will return to this further shortly.
Problem #2. Anytime a phenomenon is medicalized, you suggest the treatment might be medical rather than sociological. For example, many in the trans community have a complicated relationship with “gender dysphoria” as diagnosis. For some, gender incongruence is experienced as a medical condition remedied by hormone blockers or replacement or surgery, so diagnosis is an appropriate and logical next step in order to obtain access to gender confirming care. Yet it is considered a mental health diagnosis. For others, no medical treatment is needed to affirm identity and dysphoria is the natural consequence of being repeatedly and perpetually misunderstood by a society that genders many things that have little to do with the performance of femininity, masculinity, nonbinary or agender identity. Both groups of people are expected to accept the same label, while one is a body problem and the other is a social problem, a reasonable reaction to unreasonable circumstances.
Problem #3. Over time, description has been conflated with causation. When I was a brand new baby therapist, one of my clients told me, “I can’t get out of bed because I’m depressed.” I recall explaining that treatment involves gradually shifting ourselves out of the cycle of withdrawal into ourselves and moving back into our lives through scheduling pleasurable activities and resisting the urge to believe everything we think. I’ll never forget how she looked at me deadpan and said, “so what you’re saying is that I’m depressed because I’m depressed.” I could see the crossroads in this moment that she had laid out for me: on one path we could locate the problem of circular reasoning within the understandable assumption that she came by honestly as a “good student” of the pop psych dogma, that diagnosis is a causal explanation. On the other path, the one that is more tempting when we are struggling, lay the assumption that I was blaming her for her predicament. It really highlighted for me the damage that this field has done in arming people with language that we use against ourselves. My client deserved better than this goofy messaging that risks shame and blame like the toppings for a very crummy sundae. Depression is the description that’s sometimes used when someone is experiencing low mood every day, believes negative thoughts about themselves, and is struggling to do activities that they used to enjoy. Depression is not the cause of those things, and my client was not the problem for experiencing those things. Just because you are not the problem does not mean you cannot be part of the solution.
Problem #4. When you name something, people tend to hold onto it like a possession. Labels, especially when conflated with causes, tend to be very hard for people to shake, whether this comes from inside or outside. It reminds me of the scene in Rooster when the main character is hanging out with some young college kids and accidentally bestows the nickname “pig tits” on one of the students who cannot shake that nickname for the remainder of the show. I’ve had folx who came to me after years in the community mental health system with a diagnosis that had followed them around from therapist to therapist only to discover that the label they were given completely missed their experience of being Autistic. I’ve had other folx, who themselves found themselves in a label that felt like home for a time and then became a refuge from vulnerability of growing beyond the label. There’s this beautiful metaphor that I learned from an ACT practitioner that I think demonstrates this case quite well using the latin phrase, “corpus delecti,” Latin for “the body of the crime.” It’s sometimes used in homicide investigations to make the point that there must be a body to prove that there has been a crime. In other words, for the trauma we have survived to be legitimized, we sometimes subtly hold onto the strategies we have accumulated over the years to cope, ensuring that we continue to be the body that proves the crime. A label is not proof of suffering. Honoring our histories by healing is the best proof we have.
Problem #5. Diagnosis is extremely inconsistent. Post-traumatic stress disorders (PTSDs) are a prime example of this. As the only family of psychiatric diagnoses that requires a specific event to have occurred for an individual to meet criteria for the diagnosis, the PTSD label taken at face value not only predisposes us to attributing causality (See Problem #3), but it also creates a whole mess of confusion and difficulty. For starters, people can experience a traumatic event and go on to develop completely different struggles, recover naturally, or even develop positive changes due to learning what they’re made of. The requirement that a specific type of life event occurred also runs the risk of being deeply invalidating. For example, if someone has not experienced one of those “qualifying” events, it suggests that the event was not deeply disturbing, impactful or… traumatic. There’s a particularly painful type of irony in institutional invalidation by the very field that proclaims interest in being the stewards of mental health and well-being.
Making Diagnosis Work For Us
The type of approach I take to diagnosis is a pragmatic one. This means doing what works, and to me, that requires being real about the world we live in. Let’s take a quick look at some of the reasons we should still care about diagnosis:
1. Insurance companies require a diagnosis in order for you to be able to receive reimbursement for therapy services.
2. Therapy can be expensive. If diagnosis helps providers speak more efficiently to one another, so that it lowers the cost of consultations between treatment providers for clients, then I am all for it.
3. Some programs require a diagnosis almost as a ticket to entry. I’m thinking about things like disability accommodations for school or intermittent leave to attend psychotherapy appointments under FMLA. Some treatment programs too require the diagnosis. If it gets you in and it would help you, it might be useful for us to be open to using it.
4. Grant applicants have more success obtaining funding for research to improve treatment when they can reference specific diagnostic categories. If it improves your treatment, then I’m a fan of that research getting funded.
5. Last but not least, while I’m not the biggest fan of Dr. Google and Nurse Reddit from a health anxiety perspective, I’m a big fan of the internet’s ability to increase connection among people who might otherwise not be able to meet. Without diagnosis, it would be very difficult for organizations like the International OCD Foundation to be able to connect people from all over the world to find one another. If something reduces shame and a sense of otherness and helps you find your people, then I’m all in.
What a Mixed Bag!
So what do we do with this complicated mix of problematic origins and the need to navigate the world as is? Rather than trying to win a 5D chess game against an illogical and oppressive system, I suggest we do a little alternative rebellion here and flip the chess table. Alternative rebellion, to borrow a phrase from Marsha Linehan, the creator of Dialectical Behavioral Therapy (DBT), suggests that we find nondestructive, skillful and creative ways to push back against systems that do not serve us. Let’s find the line between helpful and unhelpful uses for diagnosis and loosen the grip on its importance. Instead, here are some alternative ways of talking to ourselves about what’s going on inside of us.
Instead of asking, “what’s wrong with me,” or “what’s my diagnosis” ask:
What happened to me? How do I make sense of these experiences?
What thoughts and feelings are happening on the inside? What do I believe about my inside stuff?
How have I learned to deal with my inside stuff? Do those strategies still serve me?
How could having a label help me get my current needs met?
What label is a good enough description for these things? What does the label leave out?”
I’ll leave you with another quote from that complicated figure I mentioned at the beginning, Thomas, Szazz: “In the animal kingdom, the rule is, eat or be eaten; in the human kingdom, define or be defined.” Let’s make our own stories.
