This is the second in a two-part series exploring the purpose and meaning of the mental health labels applied to so many of us that are Different Functional. If you haven’t read the first part about societal labels, I definitely encourage you to!

In the last installment of this blog, we looked at societal labels. This time around I would like to look at diagnostic labels. These are the official diagnoses handed out by healthcare professionals like doctors, counselors, psychologists, and psychiatrists. Unlike societal labels, diagnostic labels did not occur organically and naturally. They were developed after years of study, work, and experience by educated professionals that were doing their best to “help” individuals whose differences caused issues for them or society.

Origins of Diagnostic Labels

Initially, diagnostic labels were created with an eye toward research and treatment. They were a simple handle to explain a lot of technical and behavioral information quickly. This allowed health care professionals to easily understand a “disorder” or “disease”. This understanding then allowed them to communicate with other professionals, to gain knowledge about treatment options, and to design treatment plans based on others’ past experiences.

As the world of psychology and psychiatry began to grow, so did the labels used to describe their patients. Eventually in the mid-1900s, labels become an official part of medical treatment jargon. This was in part due to the increase in mental illness seen in the general population, caused largely by World War II. In 1949, the International Classes of Diseases (ICD), a globally used manual that describes the extent, causes, and consequences of medical disorders, added mental illnesses to their list. Shortly after, in 1952, the American Psychiatric Association, created its own manual focused solely on mental illnesses. It was referred to as the Diagnostic Statistics Manual (DSM). Both of these manuals have since then undergone many revisions and changes.

Internationally, the ICD is typically what is used to diagnose someone with a mental illness. In the U.S., health care professionals typically rely on the DSM. While initially, these manuals provided terms to help health care professionals understand and treat their patients, the quick, definitive classifications soon began to be relied on and required by health insurance agencies.

Label Now Required

Health insurance will typically only pay for services that are medically necessary. In the absence of a diagnosis, it is very hard to prove medical necessity. What this has come to mean is that if you need health insurance to pay for any treatment regarding your mental health, then a health care professional will have to provide you with a diagnosis. This diagnosis doesn’t have to be 100% accurate or fully fitting, it simply needs to exist so that the health care professional can receive payment for treating you. There are many individuals who may not “need” a diagnosis. They are simply struggling and need a little assistance (therapy, medication, etc.) to make it through. But if they expect their insurance to pay for these services, they will have to receive a diagnosis.

Government and corporate bureaucracies have furthered this use of diagnostic labels. Many government programs and laws as well as company policies now require an official diagnosis for a variety of services and accommodations. So, even if your behaviors aren’t significant enough to truly warrant a diagnosis, if you would like to receive benefits, protection, or accommodations, you will need to get a diagnosis to do so.

This is part of why diagnostic labels have become so common. They have become as necessary as a state-issued ID. They are a way to prove you are worthy of treatment, protection, or accommodations. This is not to say that all diagnoses are unwarranted. Not by a long shot. And it is also not to say that mental illness is not increasing. I truly believe that the rates of mental illness are drastically increasing as our culture becomes more and more intrinsically sick and twisted. What I do mean to say is this, if you have mental health struggles and you need help, you will likely have to get a diagnosis. Your desire for one, the true fit of the diagnosis, or even the extent to which your deviations are strong enough to warrant one are somewhat irrelevant.

Diagnostic Labels and Bureaucracy

How exactly do diagnostic labels get assigned? Well, most health care professionals will do their best to provide the most fitting and accurate diagnosis possible. This is in part because they are trying to be authentic and honest and in part because the label will dictate what treatments your insurance will pay for. With this in mind, though, sometimes the diagnosis provided may be less about the reality of your behaviors and more about the reality of insurance.

For example, many insurance agencies will not pay for Axis II diagnosis, or in other words personality disorders. The official reason for this is that insurance sees these types of disorders as long-term and chronic, not acute issues in need of treatment. The reality, though, in my opinion, is that most insurance companies see the treatment of personality disorders as too risky of an investment. Personality disorders are very difficult to treat and often take years of inpatient and outpatient wrap-around services (medical, psychiatric, case management, therapy, etc.). This is a lot of money that may or may not result in the person becoming functional. Why waste the money? Especially since individuals with personality disorders are often so dysfunctional they have no real power or voice in our society anyway. This sentiment may not reflect reality at all, but I believe this is what the insurance companies actually think.

This means that, sometimes, even though a person may qualify or warrant a diagnosis such as Borderline Personality Disorder, a health care professional may instead label them only as Bipolar Disorder. Because Bipolar Disorder is something insurance will pay for. Now don’t get me wrong, many times, the individual will also have a Bipolar Disorder or another type of disorder that insurance will pay for. So, the mental health professional is not lying, they are simply being selective in what they tell the insurance company they are treating. While this may seem like shady behavior on the part of the health care professional, more often than not, it is extremely caring behavior on the part of the professional. They want to help the individual. They want the individual to get healthier, more functional, and live a more fulfilling life.

But, they also need or (dependent on the company they work for or the state they work in) are required to make money for their services. Whether you are a doctor of psychiatry or a master’s level social worker who offers counseling, those degrees come with a LOT of student loan debt. (Average cost of a master’s degree being $60,000+.) Even if the professional wanted to be altruistic and volunteer their time, the realities of student loan debt, daily personal bills, liability insurance, licensing requirements, and other overhead costs prevent them from doing so. So, they do the best they can for the client/patient, and they provide a diagnosis that the insurance will actually pay for.

Diagnostic Labels & the Clinician

Bureaucracy aside, how does a healthcare professional even decide what diagnosis to give a client? After all, mental illnesses, for the most part, are much more nebulous than many “physical” illnesses. There is no blood test that can prove depression, no MRI that can definitively prove autism. So how do these professionals figure out which label to apply?

Mental illness diagnoses are not actually concrete things. They are simply groups of behaviors, that, when clustered together with enough frequency, can be called something. That is, essentially, what the DSM is, a list of symptoms classified under a heading. They do their best to be very specific using objectively definable words and phrases such as “psychomotor agitation,” “hypersomnia,” and “fatigue.” They even try to provide numerical cut-offs like “five or more of the following symptoms,” “two-week period,” and “more days than not.” Even with this official language, though, there is a lot of room for interpretation with phrases such as “clinically significant distress,” “inappropriate guilt,” or “diminished interest.” (You can use this link if you’d like to see an example of how these criteria look for Major Depressive Disorder.)

The assignment of diagnosis is as much an art as it is a science. Even with additional tools such as questionnaires and behavioral checklists that have been studied and validated, diagnoses remain nebulous things. This is in part because many of the same behaviors can be found in multiple diagnoses. Sensory issues, for example, can be found in Attention Deficit Hyperactivity Disorder (ADHD) and Autism Spectrum Disorder (ASD). Difficulty prioritizing, multitasking, and focusing are all behaviors commonly found with anxiety, Post Traumatic Stress Disorder (PTSD), depression, ADHD, ASD, and others. There is example after example of symptoms and clusters of symptoms that can be true for a variety of disorders throughout the DSM. And this doesn’t even take into account individuals that may need multiple diagnoses.

The health care professional has to do their best with the tools they have. They have to eliminate as many options as they can and settle on the most likely option. Sometimes this diagnosis will change over time as the professional is able to see more and more of a picture. Bipolar Disorder is an excellent example of this. If an individual seeks out treatment during a depressive phase, they will often be initially diagnosed with major depressive disorder. The individual, because they are depressed, may find it difficult to remember a time they were anything but depressed, so this is the only information they offer. The professional, having only what they see before them and the individual’s input, diagnoses depression. It isn’t until later in the treatment when the individual shifts into a mixed, manic, or hypomanic state that the professional finally has enough details to truly see what is happening and can alter the diagnosis to a more accurate Bipolar I or Bipolar II Disorder.

Bias in Labeling

All of this is further complicated by factors such as gender, sex, ethnicity, race, and culture. Many individuals from various arenas have argued that the DSM is biased. That the very nature and description of the disorders in it are racist or sexist. Or that the information provided in the DSM simply does not include enough or rely enough on studies and research conducted on diverse populations. The very fact that homosexuality was an official diagnosis with suggested treatment until 1973 can speak to the fact the DSM has, and likely still does, reflect societal biases.

Even if you were to accept the DSM as 100% unbiased, the same cannot be said of any of us, and that includes the health care professionals that assign these diagnostic labels. There is study after study about the culture, racial, and gender bias that occur in assigning diagnoses. Even trying to define a mental illness is a tricky business. Add in the reality of human bias and the whole thing gets significantly more complicated.

Diagnostic Labels and Society

Ultimately, for many of us that have been diagnosed, these labels are just best guess estimates. They may be helpful in some ways, but they don’t really reflect the reality of who we are or what we are experiencing. We are different. Our behaviors, our thought patterns, the writing in our brains, the balance of our neurochemicals. All or some of it is simply different.

We have underlying issues in how our brains are formed and process information. Many of the “symptoms” we experience are simply the result of how our brains react to the world and how we process the information we receive. Our brains and bodies (through genetics, womb stress, childhood trauma, and other environmental factors) are primed to process and react to information in a way that deviates from societal norms. It is this deviation that results in a “mental illness”. If enough of our symptoms match diagnosis A, then that is how you will be labeled. If enough match diagnosis B, then that will be your label. For many, these labels are not a perfect fit.

It is here, in the interplay between self and society, that the real philosophical questions of mental illness and diagnostic labels exist. As I said in my last blog, a mental illness by its very definition is a deviation from the norm or average. It is a deviation from society. So, the question becomes, are we the ones that are ill? Or is it society that is sick, and we are simply responding sanely, rationally, or appropriately to a sick world?

For many of us that are Different Functional, society is in direct defiance of how our bodies and minds are genetically and environmentally programmed to work. By functioning in congruence with our true selves, we are functioning incongruently with society. Because culture (as the one with power) will always be right, this makes us wrong. It is possible that our brains, our genetics, or our behaviors, are actually impaired. But it is also equally possible that we are in fact operating more optimally. That culture is, in fact, impaired. And we simply have found a way to be immune to the insanity that is now the norm. Either way, the result is the same. We are the deviations, so we receive the labels.

Whether society or us is in the “wrong”, though, these labels exist. And, for many of us, they are a very real and very relevant part of our existence. They are a tool that shapes our lives. And like a tool, they can be inherently neutral, they can be used for good, or they can be used to harm.

Negative Uses of Diagnostic Labels

On the negative side, diagnostic labels can be very damaging. They imply limitations and defects. Those around us may treat us as though this is all we are, a lump of limited defectiveness. Some of us may also internalize these societally charged, negative ideas about our diagnostic labels and allow these limitations to be a reality. We may choose to jump whole-heartedly into our “insanity” and ensure that every checklist item for our diagnosis in the DSM is thoroughly checked. I am a firm believer that each of us has limits and there are things we can NOT do and things we can NOT change. I also believe, though, that too often we let our diagnostic labels inform us of our limits, instead of finding the reality of our limits for ourselves.

Another way in which diagnostic labels can be damaging is when they are quite clearly wrong. While diagnoses are nebulous and squishy, applying the wrong label to someone can cause all sorts of issues. This is mainly because the treatment associated with the label will not fit the reality of the situation. An excellent example of this is when someone who has Bipolar Disorder is diagnosed as having Major Depressive Disorder. The treatment for depression often includes anti-depressant medication. Anti-depressant medication can trigger a hypomanic, manic, or mixed episode for someone who actually struggles with Bipolar Disorder. And, oftentimes, the behaviors exhibited in a manic or mixed episode can be much more dangerous and harmful than those exhibited in a depressive episode. So this “wrong” label means our treatment may in fact result in a harmful situation for the individual.

Diagnostic labels can also be harmful when they are used to label diversity as dysfunction. As I said before, homosexuality used to be an official diagnosis. Because it was a diagnosable mental illness, anyone that was gay was seen, by society and mental health professionals, as sick. Diagnostic labels are, after all, labels that describe disorders and illnesses. They describe deviations with ramifications so severe for the person or society that they should be treated, managed, and, if possible, eradicated. Where does the line lay between diversity and dysfunction? Both are technically deviations from an established, societally agreed to norm. There are still diagnoses in the current DSM that some would argue should not be there because they are not in fact illnesses, but rather expressions of the normal range of human behavior that should be accepted and not categorized as sickness.

Positive Uses of Diagnostic Labels

Diagnostic labels can also have a positive impact or be used for good as well. The basic function of a diagnostic label is to provide a quick handle for a large amount of information. This means with just one or two words we can easily find information that is relevant to us. Enter “depression,” “PTSD,” or “autism” into Google and you will have a world of information before you. Treatment options, resources, research, communities of people similarly struggling. One simple string of letters, “PTSD”, but by using it correctly, you can get a lot of information that could possibly help you with your individual struggles.

It is also a convenient way to convey your struggles to others. In your personal life, the label can offer explanations and help build understanding. Because you are now part of a community that has dealt with this, you now have more information to offer your loved ones. And even if your words fail in trying to describe or explain, others like you have spoken and you can borrow their words, if needed, to build a bridge of understanding and acceptance. On the bureaucratic level, this diagnosis also opens the door to accommodations, legal protection, community services, and insurance reimbursement. It succinctly and efficiently categorizes your struggles and gives you access to all the bureaucratic assigned trappings.

Diagnostic labels can also assist you in changing your narrative. A label can provide a concrete handle to begin understanding your life and rewriting your future. This is why, for many, being diagnosed can be a relief. You aren’t defective, a failure, lazy, or any of these other negative things you or society thought. You have a disorder, an illness, you are designed differently, however, you wish to term it. The label can help you understand why certain things are so difficult for you or why other things are so triggering to you.

This was very much true for me when I realized I was autistic. I had just assumed I was a freak and a failure in many ways. I thought I was the same as everyone else. I had the same opportunities, the same biology, the same reality. So, my struggle to understand social situations and norms was a personal failing due to me being stupid and inept. My inability to tolerate certain sensory input was just me over-reacting. My difficulties connecting with other humans were because I was somehow intrinsically wrong.

When the possibility I was autistic was introduced to me, it was a relief for me. Not because any of my struggles changed, but because my understanding and perception of them did. I had thought all along that I was like everybody else, so each of my struggles was a personal failing. When I realized I was autistic, I realized I was NOT like everyone else. I was wired differently, my brain processed differently, my reality was different. These were not personal failings; they were simply the product of a different brain. I did not have the same resources as others, so I could not behave like others. Essentially, to put it simply, it wasn’t my fault.

The diagnostic label gave me the key to rewrite my narrative. And it is at this point that I got to choose how I used it. I could have chosen to rely fully on the diagnosis. To use it as an excuse for my behaviors. Plead with others that I could NOT change, that I was limited, that my behaviors were beyond my control. Instead, though, I used the label as an explanation for my behaviors. I used it to find others like me, to find information on how to overcome some of my struggles, how to make living in what felt like (and still feels like) a hostile world easier for me. To explore my personal limitations and make conscious choices about how much I wanted to change and how much I wanted to change my environment and the world around me.

At the end of the day, no matter what diagnostic labels you have been given, you are still you. These labels are not who you are. They may be part of you. But, ultimately, they are words. They are a way to summarize and briefly explain a collection of your behaviors. They are tools that you have been given by health care professionals. It is up to you how you use the tool. Your diagnostic label is just another word in your narrative. A narrative that you have the power to create, shape, and change.

What’d You Call Me: Part 2 - Mental Illness & Diagnostic Labels

Pulling at the Threads: The Struggle to Heal When You Have Comorbid Disorders

What’d You Call Me? Part 1: Societal Labels & Mental Illness