Born in 1978, generationally I’m at the tail end of Gen X. We are the forgotten generation, often ignored in polls, unable to be nailed down politically. We were largely dismissed in our formative years as angry slackers, but we didn’t care about labels and rejected people’s attempts at shoe-horning us into a definition. As we aged, we adopted society’s labels of job titles, marital and parental status, etc. We eased into being defined, but may not have fully accepted it.
I considered that perhaps this was the root of my feeling at odds with wanting a label to describe my internal experiences. A label feels like a starting point for discovery, a definition to work from, and an explanation to hand out to others, but it also seems like a fence to be corralled into. The more mental health related content I see by folks who are not medical professionals, the more it appears that labels are providing a framework for an “us vs. them” skirmish rather than bringing us together with greater understanding of each other.
The source of these labels is the “bible of psychiatry”—the DSM, or Diagnostic and Statistical Manual of Mental Disorders. In this manual, mental disorders are determined by both a categorical and polythetic approach. Categorical means you either have a disorder or you do not, there is no in-between. Polythetic means that a person has to meet a specific number of diagnostic criteria in order to receive a diagnosis.
Let’s take ADHD, for example.
“For children and adolescents, DSM-5 criterion A requires the presence of at least six of nine symptoms of inattention, six of nine symptoms of hyperactivity or impulsivity, or both. Therefore, a child with ten impairing symptoms (five of inattention and five of hyperactivity or impulsivity) would not meet the criteria for a formal diagnosis.”
The paper quoted above is titled “ADHD diagnoses: are 116 200 permutations enough?”
That means in October 2019 when that paper was written there were over 116,000 possible combinations of symptoms for a child to receive a diagnosis. If you think that number is shocking, there are currently 636,120 possible combinations of symptoms for a diagnosis of PTSD.
While it seems like a high number would mean more people would get diagnosed, remember it’s an all or nothing situation. Each symptom is weighted the same (even though there are some that drastically differ in their severity, such as in Borderline Personality Disorder where two of the symptoms are self harm and a shifting self-image) and if you fall short of the number of symptoms by just one, while you could still receive therapy for your symptoms, you won’t have access to the work or school accommodations that a diagnosis could provide. (I also need to mention that diagnosis can be unhelpful as there is plenty of stigma around some diagnoses and it can color the medical care that people receive, especially those who are a part of a marginalized community.)
To me, our current mental health diagnostic system seems like a financially and emotionally draining game of pin the tail on the donkey where the only winner is the insurance companies. However, there’s a glimmer of change on the horizon. There are two systems that aim to restructure how we look at mental health: the Power Threat Meaning Framework and HiTOP, which stands for Hierarchical Taxonomy of Psychopathology.
The Power Threat Meaning Framework is currently being used in the UK and is described by one of the authors as:
[A] way of helping people to create more hopeful narratives or stories about their lives and the difficulties they have faced or are still facing, instead of seeing themselves as blameworthy, weak, deficient or ‘mentally ill’.
It highlights and clarifies the links between wider social factors such as poverty, discrimination and inequality, along with traumas such as abuse and violence, and the resulting emotional distress or troubled behaviour, whether it is confusion, fear, despair or troubled or troubling behaviour.
It also shows why those of us who do not have an obvious history of trauma or adversity can still struggle to find a sense of self-worth, meaning and identity.
The APA describes HiTOP as a system that views mental health as a spectrum.
They explain:
Mental health problems are difficult to put into categories, as they lie on the continuum between pathology and normality, much like weight and blood pressure. Applying an artificial boundary to distinguish what is a healthy behavior versus mental illness results in unstable diagnoses, as one symptom can change the diagnosis from present to absent. It also leaves a large group of people with symptoms that do not reach the threshold untreated, although they suffer significant impairment.
While it is unlikely that we’ll see these methods adopted in a broad context in the U.S. any time soon, that any alternative to the DSM exists and is being explored as a better way to help people is worthy of celebration.
I have many traits of giftedness, Autism, and ADHD. Giftedness is not recognized by the mental health field, I did not qualify for ADHD diagnosis, and an Autism diagnosis is well over $1000 and not covered by insurance. “Neurodivergent” is the closest thing that fits, but that term requires there to be a “neurotypical” to diverge from and I don’t think that exists. Just like our bodies are different, so are our brains; that’s literally the meaning of neurodiversity. Mental function cannot be a binary of neurodivergent and neurotypical as there is no scientific definition of what “typical” entails. It’s largely a societal construct.
That being said, I bristle at the “everyone is a little that way” argument because it feels dismissive of people’s lived experience and reduces it to generalities, even though I know in most instances it’s meant to be empathetic. If I say I hate loud restaurants, for example, of course it could be easily argued that everyone hates loud restaurants. However hating loud restaurants because they’re inconvenient to have a conversation in is not the same as hating loud restaurants because of not being able to shut off hearing every single noise which leads to sensory overload and shutdown.
Our bodies and brains process situations differently and while we can experience things similarly, there’s no way of us truly knowing and understanding how each person moves through the world. It’s even somewhat of a mystery to ourselves. To make this mystery a little less overwhelming, I’ve begun to ask A LOT more questions, both of myself and others. I’m in the process of learning how to deprogram myself from how I think I “should” do things; everything from scheduling my work to organizing my home to daily routines. I’m also discovering who I am now that I’m not in a standard work environment or living with another person.
I didn’t really know that I was hiding myself, things just always felt off. I’ve never worked well with managers and was often reprimanded for being negative or difficult. I tried to be more myself at home but it was met with a great deal of judgment by my spouse so I stopped. It wasn’t until I hit a breaking point and changed everything that I began recovering from decades of pushing myself to do what I thought I should and realized that I had spent A LOT of energy trying to fit in with people and systems that weren’t the right fit for me.
As it turns out, being Gen X is only a small part of why I struggle with labels. My therapist explained to me that my waffling is likely because I haven’t connected to the emotional piece of my brain that wanted validation and safety as a child.1 Due to the long-term trauma I experienced (daily physical and emotional bullying during grade school for multiple school years), my corpus callosum (the part of the brain that connects the hemispheres) is likely damaged or underdeveloped. This means I’m often either all in my feelings (right side) or all in my “thinking brain” (left side). The two sides don’t work together to create a full and balanced picture when I approach a situation or want to make a decision. Once I develop a stronger connection with trauma work, how I want to define to myself may become a lot clearer.
Finally, I’ve come to know that self-discovery requires quite a fair amount of solitude, which was difficult initially but has become quite peaceful. Knowing how to be with and accept myself apart from others allows me to fully be myself socially, regardless of my lack of self-definition.
Rilke speaks of solitude most beautifully:
And you should not let yourself be confused in your solitude by the fact that there is something in you that wants to move out of it. This very wish, if you use it calmly and prudently and like a tool, will help you spread out your solitude over a great distance. Most people have (with the help of conventions) turned their solutions toward what is easy and toward the easiest side of the easy; but it is clear that we must trust in what is difficult; everything alive trusts in it, everything, in Nature grows and defends itself any way it can and is spontaneously itself, tries to be itself at all costs and against all opposition. We know little, but that we must trust in what is difficult is a certainty that will never abandon us; it is good to be solitary, for solitude is difficult; that something is difficult must be one more reason for us to do it.
I’m finally committing to finishing my audiobooks! I find if I’m listening to something I tend to ignore the cold weather and give my dog more time to sniff about, so I’ve been more diligent about turning this on when we go out. I have almost 3 hours left (I’m currently finishing up Chapter 6) and I’m considering purchasing the physical book to have it to refer back to. Lots of great insights and perspectives.
This is hands down my favorite Substack and I read every article she writes. I think it’s so important to be realistic about the direction things are going in and sometimes that realism looks negative and that’s okay.
Hi, Mom! Sending reassurance that this is referring to school and not home. My room full of books, crafts, and furry pets along with frequent trips to the library made me feel very validated and safe. :)