Falling Through the Cracks: When the DSM Can’t Find You

This week in my DBT group, we were talking about what Borderline Personality Disorder is and how it’s diagnosed (DBT was originally formulated for BPD). Essentially, there are nine traits that are used to diagnose BPD. If your diagnosing therapist sees five or more of them in you, then you are diagnosed with BPD. If you have less than five, but still have some, you are diagnosed with what’s called BPD Traits. I had never heard of BPD Traits before, and I don’t think most people have. Insurance is far less likely to cover something that sounds subclinical like that, and it’s far less likely to be understood by the general public. It simply sounds less severe, right?

 

Unfortunately, this system has a few major flaws, and it seems to me that these flaws are indicative of many of the problems with the DSM as a diagnostic manual. The main problem with this system of diagnosis is that many of the traits of BPD are things that everyone has to some extent or another (things like anger issue, or efforts to keep people from leaving you), and so they only become diagnosable when they seem to be excessive or problematic. This leaves a great deal up to the discretion of the diagnosing therapist. It also means that that therapist has to draw a hard line about what counts as problematic and what doesn’t, when in reality these traits exist on a spectrum. So you could be just over the line and counted as having the trait, or you could be so far over the line you can barely function on a day to day basis, and in the eyes of the diagnosis, you have the same trait.

 

This also means that the difference between BPD and BPD traits isn’t as clear cut as it might seem in the first place. For example, someone with BPD might be just over the line on five traits, but someone with BPD traits might be way, way over the line in four. Who’s to say which is more severe, or that one should receive a full diagnosis that allows them access to treatment, while the other receives a diagnosis that gets them almost nothing?

 

Overall, this illustrates something that is definitely wrong with the DSM: mental illness and mental traits all exist on spectrums. There is no on or off switch to depression, anxiety, paranoia, or any other problem that may be diagnosed as a mental illness (with the possible exception of hallucinations). However in order to diagnose someone (and particularly for that individual to gain coverage of treatment), symptoms are treated as present or not present. Occasionally we use modifiers like “severe” or “mild”, but more often than not it’s either there or it’s not.

 

This seems to be a recipe for disaster for people whose symptoms either don’t present as traditionally understood, who are barely subclinical, or who have an odd constellation of symptoms. I find that I often have this problem: I have lots of issues (oh LOTS and lots). I have bits of OCD, OCPD, ADD, BPD, depression, anxiety, bulimia, anorexia, and really probably a whole host of other things. But because many of them are subclinical, or I don’t have the right pairings to fit into a particular diagnosis, I have been left without any sort of personality disorder diagnosis, or larger diagnosis to fit it all together. Despite how severe my eating disorder was, I was lumped in the EDNOS category, which is far less often covered, and is often treated with less respect and as less severe than other eating disorders.

 

This is a serious problem if we want to provide proper services for those people suffering from mental health issues. We shouldn’t have to wait until a symptom is truly interfering with someone’s basic functions before we give them help. There are many problems with the DSM, and trying to posit a replacement for it is extremely difficult, but one element that really could use replacement is this all or nothing thinking. There is no “partially depressed” or “sort of ADD”. You either have it or you don’t. One improvement could be seeing mental health on a spectrum. We all have different traits, and many of those traits are spectrum style traits. Understanding that moving towards the extremes is always a problem is one great way to view mental health in a more understanding and helpful way, because it allows us to try to help everyone move towards a more balanced place, and could allow us to provide treatment for those who have not yet reached the critical zone.

 

Another issue with this system is the amount of discretion that it allows for the diagnosing clinician. Let’s look at a particular example. One of the criteria for diagnosing BPD is “inappropriate, intense anger or difficulty controlling anger”. This is fairly vague. What counts as inappropriate anger? How might things like race and gender fit into this (hint: black women will always be viewed as having inappropriate anger)? Shouldn’t there be specific examples of things that might constitute inappropriate anger, or the consequences in someone’s life for “difficulty controlling anger” or the number on an emotional scale of what constitutes “intense” anger? How often does one need to be intensely angry to get this trait? All of these things are left up to the discretion of the diagnosing clinician, and unfortunately this allows for a lot of bias.

 

There is a difficult balance here, because having that kind of specificity means that you could be very close to a diagnosis, but not quite reach the correct number of episodes, or the right “level” of anger to reach diagnosis. It seems to me that having these specific levels combined with a spectrum view of disorder would allow clinicians to have less individual discretion that can lead to variability in diagnosis, but would also allow more people to get the treatment that they need. It is widely recognized that we need some changes in the DSM, but these particular issues are ones that I have seen in action in myself and in people around me, and that seem as if they could be fixed without great difficulty. Get on that DSM.

DSM V and Diagnostic Woes

THE NEW DSM IS OUT AND I HAVE A COPY OF IT! For those who don’t know, the DSM is the Diagnostic and Statistical Manual, essentially the bible of Psychology. It’s what’s most often used to diagnose someone, and if you want insurance to cover treatment you generally need a DSM diagnosis. They’ve been in the midst of some pretty contentious updates for a long time, but I now have my hands on the brand new copy of the DSM-V.  Mmmm, tasty.

 

Of course when I got ahold of it I spent a good half an hour paging through and self-diagnosing, but after that diversion, I moved over to the eating disorder section to see what updates had actually gotten through and how they had phrased them. I was happy to see the inclusion of Binge Eating Disorder, as well as Night Eating Disorder and Purging Disorder as new categories in the manual, but when I looked back at our old favorite anorexia I was…annoyed.

 

One of the most contentious points in the DSM IV was the weight criterion for anorexia. While this has been removed from the current version and replaced with the following: “a significantly low body weight in the context of age, sex, developmental trajectory and physical health. Significantly low weight is defined as a weight that is less than minimally normal, or, for children and adolescents, less than that minimally expected,” there is a scale to determine the severity of the disorder. This scale is entirely based on BMI, with the caveat that a psychologist can make adjustments if necessary. And I must say that the numbers listed on that scale are INSANE. To be considered a moderate case, your BMI needs to be between 16 and 17.  My BMI has never been even close to that. While I generally dislike numbers, and I am going to insert a HUGE TRIGGER WARNING right here, when I was at my worst I literally would go for a week without eating at times. I never ate two days in a row. I was seriously ill. However my body weight never dropped into what would be considered technically underweight by the BMI scale. I would have been considered a mild case, even if I had gained the diagnosis at all (as it stands I was diagnosed with EDNOS because of the weight criterion in the DSM IV).

 

We have gone over and over the harms that come from including weight as a criterion of an eating disorder. First and foremost, it keeps people from getting treatment until they’re already too sick, which is unhelpful to everyone involved. It ignores how different bodies react to starvation. It ignores that people’s weight can fluctuate throughout the disorder or treatment. It’s simply unrealistic. But more than anything, I feel like it shames those people who never get that diagnosis. It tells them that their pain and suffering wasn’t real unless they hit the magical BMI of 17 marker. And I am so disappointed in the writers of the DSM that they would ignore all of the feedback they’ve received from the eating disorder community and still include BMI criteria for anorexia. I’m so disappointed that after all the research and stories and experiences that people have shared that illustrate that an eating disorder is not about weight, we still have to reduce to such. And most of all I’m disappointed that until the next rewrite, more individuals will be stuck trying to navigate a system that reduces them to their weight, even as it’s trying to convince them that they should stop doing that.

Frustrations with the DSM

I live in a very psych oriented world. I work for a nonprofit that provides services to kids with autism and developmental disabilities and general mental health problems. I spent at least five hours a week in therapy. I talk a lot about mental health, I care a lot about mental health, and a few of my friends and I just started throwing around the idea of creating a skepticism and psychology conference (SO EXCITED). So I’m thinking (as per usual) about mental health.

One of the talks at SkepTech (by the fabulous Stephanie Zvan) was about psychometrics, which is “The science of measuring mental capacities and processes.” She talked a fair amount about how we often define certain disorders based on our stereotypes: we view autism as a boy’s disorder, so the diagnostic criteria are slanted towards how autism presents in boys. I think this is a very important thing to address (especially in terms of race. UGH), and I think the place to start is with the DSM (the psychology diagnostic manual). The DSM is very much a quantitative measure. For eating disorders for example, it lists particular weights, numbers of binges and purges per week, and length of the persistence of the disorder as diagnostic criteria. In many ways, these concrete diagnostic tools are incredibly helpful: they allow insurance to see who to treat or not and they allow clinicians to have something more solid than personal judgment to use in their diagnoses. That’s important. We do need some element of consistency, we need some science in our diagnostic tools.

The problem shows up in the fact that many of these diagnoses are written around what is considered the typical case and doesn’t necessarily allow for any variation. It also doesn’t address the fact that many people have lots of symptoms that don’t quite fit into a neat diagnostic category. In many ways it’s far too rigid. Diagnoses that involve NOS (not otherwise specified) often aren’t covered by insurance, aren’t included in research, and aren’t afforded as much respect as serious problems by clinicians or the individuals diagnosed.

This is a really big deal because it limits who can access mental health care based upon demographic or personal variation. Males with depression generally exhibit it in very different ways from females, and they are not diagnosed as often because they aren’t viewed as the typical depression sufferers. People of color are not diagnosed with eating disorders nearly as often as white girls (particularly teens).

So how can we both create helpful categories AND capture the wild diversity of mental illness? How can we approach mental illness not as a checklist of symptoms that we address and move the individual back to the neurotypical end of the spectrum? First and foremost, insurance needs to NOT be tied to strict diagnosis. That is not fair to individuals who might need preventative therapy or interventions, or those who want to catch a disorder before it becomes so serious that it interferes with their life. It is also not fair to those individuals who have a serious mental illness that is wreaking havoc on them, but who don’t fall neatly into a category. But it’s also unfair to those who DO fall into the category, because it might ignore any other symptoms or problems that could be contributing to their diagnosis. OF COURSE labeling some patterns and similarities can be helpful because it allows us to conduct research and to develop treatments that work for people with similar issues. But these labels should not be considered so strict, should not be the only guide we have in treatment, should not have such harsh boundaries, and should allow more movement between diagnoses. They should be guidelines (the code is more like guidelines than actual rules).

There should also simply be more cross-cultural research. Right now we have very Western-centric views of psychology as well as very white, male views of psychology (thanks Freud). We need to focus on evidence based treatments, and we also need to simply be willing to have MANY types of treatment available for people who are exhibiting different symptoms because of their demographic. We need to have psychologists who are social justice aware: personally I think that sociology, women’s studies, and race studies classes should be required of every psychology major. It is SO important to improve our mental healthcare system, and the first place we need to turn is how we determine who needs mental healthcare.

If we’re being honest? EVERYONE. Mental healthcare isn’t about turning people into the neurotypical. It is about improving functioning. Everyone could use a mental health checkup, just like they have a physical health checkup to make sure they’re functioning like they should and to catch any worries or glitches before they turn into something serious. We need a paradigm shift that no longer sees diagnoses as identifying problematic difference to seeing diagnoses as identifying problems with functioning that require help.

NOTE: they are trying to adjust some of these problems in the latest update of the DSM, the DSM-V which is coming out in May.

How Do We Talk About Eating Disorders?

I’m currently working on a post for Teen Skepchick about eating disorders in a cross cultural perspective. At the moment, I’m just in the research stage of this post, so I’m reading a lot about the research that’s been done about cross cultural eating disorders and about the differences in symptoms, causes, and etiology of eating disorders in different cultures.

And I have to say that I am deeply upset by the way we talk about eating disorders. I am particularly upset because I’ve been reading academic articles, pieces by graduate students studying psychology, and other articles that are surveys of the literature on eating disorders. These should be held to the best standards we have. Unfortunately, no matter where I look (except for in very particular blogs written by people with eating disorders, particularly Science of Eating Disorders), I hear the same things over and over and over again:

“When we expose our girls to thin models and beauty ideals they develop eating disorders”

“Girls of African American descent aren’t likely to get an eating disorder because their culture values voluptuous bodies”

“Eating disorders only crop up in other countries as they become infiltrated by Western beauty ideals”

I am SO sick of the conversation around eating disorders being dominated by conversations about models and images of women in the media and the desire to be thinner. It cannot be that difficult for people to understand this, but I’ll say it again: an eating disorder is a mental illness. It is not a diet. It is not even an extreme diet. It is not a desire to lose weight. It is a coping mechanism to deal with difficult things in your life that you can’t cope with otherwise.

There is VERY little evidence that eating disorders are caused by skinny models. What there IS evidence of is that eating disorders are caused by low self-esteem, family disruption, trauma, other mental illnesses (depression, anxiety, OCD, BPD, bipolar, and addiction are common), abuse, or other difficult situations that you need a way out of. It is such a cliche by now that eating disorders aren’t about food, but I cannot stress it enough: eating disorders aren’t about food! They aren’t about looking pretty or beautiful. I have YET to meet someone with an eating disorder who says they just want to be pretty. I hear them say that they’re depressed, that they can’t cope, that they’re lonely, that they don’t feel acceptable when they’ve eaten, that they feel out of control around food, or that they use food to numb out emotions and manage other parts of their lives.

It is not helpful to keep refocusing the conversation on how someone’s body looks and the beauty ideals. This continues to reinforce them as what’s important, and it focuses the issues on the body again, instead of addressing whatever mental stress has occurred. It simplifies the matter to a point that is unhelpful, and makes treatment and self-understanding very difficult because it doesn’t allow us to reach the real etiology of the disease. It even reinforces those negative suggestions that a woman’s worth is in the beauty standards she does or does not strive to live up to.

Instead of these things, it would be far more helpful to talk about the sexism that makes women feel inadequate no matter what they do, or the bad family systems that don’t allow for good communication or healthy emotions, or the abusive relationships that many women are in, or the trauma and depression of daily life, or the failure of our mental health system to provide us with good coping techniques for when we do start to feel over our heads. If we want to talk about cross cultural eating disorders, maybe we should talk about the different family roles that exist, the different expectations of women in different cultures, the common mental illnesses in those cultures, the differences in guilt and shame in different culture (these feelings are huge in eating disorders), and the relationship that these cultures have to food as symbolic, relational, or positive.

Eating disorders are mental illnesses. They are not an attempt to be skinny. They are not a reaction to the media. They are not the desire to look like a model. They are serious. They are life-threatening. They are painful. They come with depression, constant mental stress, trauma, self-hatred, difficulty with relationships, isolation, loneliness, feelings of guilt and inadequacy, and all sorts of things that ARE NOT simply reactions to the media, but are about how we relate to ourselves and how we relate to others. Can we please start talking about them in terms of the mental situation of the individual suffering, because that is what makes something a mental illness?