When I was fresh out of college and newly married, I took a job in an elementary classroom for “emotionally disturbed” children. My co-teacher was a big black guy named Al Kelly. He could scare the pants right off some of those tough young boys. And he did. But sitting in the back of the room was a little girl named Kristin who truly was “mentally ill.” Her reality was a wobbly as a set of swings. She would sit and draw pictures of the different parts of her personality, and she was an amazing artist for so young. One of the personalities was a tall, slender woman with a row of bangles on one wrist. Another was a bad little boy who often got into trouble. Another was an old woman with a bun in her hair—she wasn’t very nice either. Kristin’s world fascinated me. I just could not understand what was going on in her brain that would take an ordinary moment and turn it into a bizarre inner picture show. When Al Kelly got into one of his “scaring the young boys straight” modes, I’d see Kristin retreating into her world, pulling out handfuls of hair. I didn’t have to be told to take her out of the room and for a walk down the hall.
The kids in the classroom crossed the continuum from tough kids growing up in tough circumstances with few coping skills to a few who had real brain disturbances. It was not difficult to tell the difference. Now, almost 40 years later, it seems mental health professionals still can’t tell the difference.
My experience in that classroom may have been a defining moment in my career. I find the brain and its mysteries infinitely fascinating. I’ve spent the decades since asking so many questions and finding few definitive answers. The one thing that I am sure of is that the emotional life of the majority of us should not be defined as an “illness.” Our shared human experiences are filled with moments of profound confusion, sorrow, fearfulness, doubt, shame, and encounters with what can only called a spiritual void. Our questions of, “Who am I and why am I here?” are rightfully at the center of our emotional ups and downs. Without them, we would not be human.
Here is my simplest take on the situation (and I frankly don’t care about the politics and profits of the medical/mental health world )–when we are suffering, the mind/brain/body/spirit is talking to us. We need all of our signals to decode the language of what will resolve that suffering. My biggest concern with the quick fix of a pill (or any instant action to remove the pain) is that we are screwing with our signal system. Imagine trying to see what our car needs if all the lights on the dashboard went black. We could be low on oil or water, overheating, whatever, but we would not know it. We’d be in the dark.
One time during a workshop in southern California I was getting ready to do a constellation with a woman and suddenly she reminded me of Kristin. She was foggy and looked half drunk. I asked her what medications she was on, and she looked at me like I was some kind of wizard. “How did you know I was on medication?”
Sadly, I could not work with her. All of the signals I needed (and that she needed) had been smeared like ink on a page. I couldn’t read her.
Charting a path to a rich and fulfilling life is a perilous undertaking for all of us. We will get off track, take wrong turns, find ourselves in a ditch, and nobody (nobody) gets anywhere without messing it up first.
On a happy note, as my friend and fellow educator Rita Smilkstein says, the human brain loves to learn. Rita says the seven magic words for people of any age or stage are, “See if you can figure this out.” And on another happy note, the researchers have officially declared that the brain never stops growing. It doesn’t “get old” as earlier scientists thought. Anytime we engage in a new endeavor we are engaging new parts of the brain.
Don’t buy into the message that 1) we should never feel bad and 2) that there is any easy solution to when we do feel bad. Instead, learn the language of your inner spirit. What whispers, what wisdom, what direction, what solutions does it speak of if you would only listen?
I was wandering around the internet yesterday and came across a great blog post about the new version of the DSM (Diagnostic & Statistical Manual of Mental Disorders) that is due out this spring. This big book, in its fifth version, categorizes and names sets of symptoms into workable labels. As I was following a comment thread, I saw my own name in a discussion some of us were having nearly a year ago about diagnosis and the mental health field. I read through the whole discussion and decided to ask the author of the blog if I could repost it here. Laura agreed to share the content, so I am including it below for those of you who are interested in this “language of the soul” and how it relates to named mental disorders. It is pretty long, and I’ve included the links to other information that Laura had listed. Laura and I are both interested in your thoughts and ideas pertaining to this ongoing discussion about how our society views our mental and emotional lives.
DSM-5: What It Is, and Why You Should Care (Posted on December 18, 2011 by Laura Zera)
Laura’s blog (http://www.laurazera.com)
It is likely that at some point in your life, either you or someone in your inner circle has been given a mental health diagnosis that was predicated on the DSM. So, what does that mean, exactly?
DSM stands for Diagnostic and Statistical Manual of Mental Disorders. Published by the American Psychiatric Association, it is used on a daily basis by doctors and clinicians around the world. Its fifth revision, aptly named DSM-5, is due to be published in May, 2013.
Why is it important to know about this book if you are not a doctor, clinician, researcher, health insurer, etc.? First, I want to outline a little bit of the history of the DSM, and then I will share my thoughts on its importance to us, the consumers of mental health services.
The very first edition of the DSM came out in 1952. It was 130 pages long and listed 106 mental disorders. It was updated again in 1968 and 1980; both the page count and number of disorders grew significantly.
The version of the DSM that is currently in use is the fourth edition, published in 1994 and then given a slight ‘text revision’ in 2000. It now stands at 943 pages and lists 365 disorders, more than three times as many as were identified in the original version of the book. While the development process for DSM-5 is closed, there has been opportunity for the public to review and comment on the proposed changes and the word on the street is that the list of disorders is expected to grow yet again.
Is the DSM growing because mental health researchers and practitioners are identifying new disorders and/or better specification of existing brain disorders, or are they creating new categories for standard human behaviors? Allegations that the DSM continues to ‘increase the medicalization of human nature’ are coming from all corners, including, interestingly enough, the doctor who acted as the chair of the DSM-IV Task Force, Allen Frances. He has an entire web page of articles posted on Psychology Today under the banner DSM5 in Distress.
The reason why I believe that the growth trend of the DSM is important to us is because invariably, along with the increase of listed mental disorders there has been an increase in diagnoses. That trend has been noted over and over again in the last 30 years. But here’s the key: a diagnosis of a mental disorder can set into motion a treatment plan that has far-reaching ramifications for the person who receives it. And why do I say that? Because often the treatment plan includes medication, and often the use of medication stretches from months to years to decades, and that can be a very serious matter. There can be side-effects, decreasing efficacy, and long-term cognitive impairment, not to mention that medication costs money.
I probably should make a statement here: I am not anti-medication. I believe that it has a role, and that every person’s case is different. There is also a giant spectrum between someone who is in crisis vs. someone who is feeling more stress or anxiety than usual, and everything that falls in between (children and their temper tantrums, for instance). Some people are in the fortunate position of having more time to see how things develop or progress before trying to assign a firm DSM-type diagnosis and starting down a medication treatment path.
It is our awareness of the trends that are afoot, however, that put us in a better place to ask questions when we are seeking help and receiving diagnoses. Could you (or your family member or friend) seek a second opinion, or are there notes from visits to different kinds of practitioners that need to be compared before a fully-formed opinion can be communicated?
Practitioners often come with their own bias, too, so it is also good to be tuned in to where they stand in terms of mental disorder diagnosis vs. human nature and behaviors. To give a brief example, I sat with a therapist once and said, “Since I’m feeling X, Y and Z, am I depressed?” Her response was, “Well, you’re certainly feeling pretty crummy about something. Let’s try to figure out what that’s about.” Her reluctance to answer my original question with a diagnosis at first exasperated me, but after a while, I understood her approach and appreciated that maybe it wasn’t so important, at that point, to diagnose me with a named condition. Rather, we worked on how I could move through the feelings that I was having (which I did, thankfully).
Really, the bottom line is this: I wouldn’t be writing about DSM’s growing list of disorders if I wasn’t so alarmed by the growth in mental illness diagnoses in the United States. For instance, just in the last two decades, the number of mentally-ill children (who were diagnosed and eligible for a disability payment) rose thirty-five fold. Mental illness is now the leading cause of disability in children in the U.S. Environmental changes may be a contributor, but the numbers are so staggering that there has got to be more behind it.
Comments and Discussion
Kate Holley on December 19 said
I agree! The need of both the medical field, and our society as a whole, to compartmentalize and put a label on everything is nearing oppressive. Particularly when it comes to basic human emotion and responses to stimuli in our environment. Diagnoses and medication seem leaps and bounds easier than actually working through raw emotion. Please note, that as an individual with a few diagnoses under my own belt, I say these these things based upon my personal experience. I do not mean to lessen anyone else’s plight, or trivialize a real need for medication.
Laura Zera on December 19 said:
Hi Kate! Thanks for your comment. One of the things that you said really resonated with me: “Diagnoses and medication seem leaps and bounds easier than actually working through raw emotion.” I’ve actually been thinking of doing a post on the topic of whether we (as the consumers) are sometimes too easily accepting of a diagnosis and medication because it is easier than the time and emotional commitment of talk therapy. I also think that talk therapy should always be used with medication therapy — I think including the former raises the chances of being able to use the latter for a finite, temporary period.
Kate Rothwell on December 20 said:
The trouble is that the standard educational system doesn’t work for some kids and the only way the bureaucracy can arrange the sort of education/attention those kids need is to get the official diagnosis from an expert.
It’s too bad that kids must be categorized to get the education they require, but given a choice between shutting out a kid entirely and giving him a label so he can get the exceptions or tools he needs, I’d go for the label. Faulty system for sure, but better than just trying (and failing) to shove all the square pegs through the round holes which is what past generations went through in schools.
The issue of medication is a whole other story — or maybe, for some parents and kids (and teachers), a whole other nightmare.
Laura Zera on December 20 said:
As Confucius said, “many Kates brings diversity of opinion.” Thanks for raising this point; it’s one of those tricky situations, for sure. I’ve read of positive correlations between high rates of kids on psychotropic medication and low-income areas, and I’m betting that what you’re saying factors into that as well. The same system shortcomings apply in adult situations as well, unfortunately: without a diagnosis, it’s often hard to access some resources and/or insurance benefits. It just makes me wince as it’s such a loaded issue.
Patricia Jamie Lee on December 23 said:
I followed you from Definitive Serious Writers to your blog. This issue of diagnosis and the DSM family has long been on my mind. It was nice to see someone post something so thoughtfully and then be followed with equally thoughtful responses. Being a human is difficult–being a conscious human is even more difficult. I’ve worked with so many people over the years and have been constantly amazed at how resilient humans can be. They seem to heal and reframe all manner of ills and to find ways to transform hurt into wisdom. I don’t like to see this spiritual process short-circuited by multiple meds. There seems to be a lot of current buzz about this topic when Peter Breggins predicted this many years ago. What bothers me most is when this special human spiritual dilemma is targeted by corporations seeking to profit.
Like you, I understand that there is a place for medication–harm to self or others is possible. For most of us, growing pains are just that–we are growing and in process. Thanks for opening up the subject. I’ll be sure to connect us on DSW.
Hi Jamie, so glad that you followed the bread crumbs! I read your LinkedIn profile — the work that you do sounds very interesting. I was recently considering an MA program at Seattle University called Organization Systems Renewal as I’m also interested in that type of work. Great to connect with you.
Regarding your comment, it keeps coming to me that we (as humans) can really sell ourselves short when it comes to our abilities to heal, reframe and grow. The systems and structures (e.g. medical insurance) that are in place certainly don’t facilitate our human growth, they better suit the ‘quick fix.’ I am fascinated by some of the groups that are emerging that are led by people with schizophrenia, e.g. Hearing Voices Network in the U.K, Freedom Center in Massachusetts. They use discussion modalities so that they can function fruitfully *with* the voices in their heads instead of focusing on trying to eradicate them or shut them out and report some great successes. Like you said, it just shows how resilient humans can be. I’d like to see some shifts in the medical establishment that would lead to greater use of that premise as the jumping-in point.
Richard Gibbens on January 2, 2012 said:
What an interesting and well-reasoned debate! I was an occupational therapist specializing in mental health. As such I was not permitted to diagnose , but needed knowledge of a range of diagnoses to help me work with clients in developing their treatment programs. I don’t believe that the growing number of recognized disorders in some way increases the amount of mental illness, or automatically medicalises or compartmentalizes people. DSMs are tools – merely collected descriptors – that seek accurately to profile lived experiences and link them with a growing body of psychological knowledge. Their use for good or ill is determined by the skill, compassion and insight of those (including mental health service users) who use them as a starting point for action plans. There can be brilliant plans and narrow-minded plans, but we shouldn’t blame the DSMs for the vagaries of therapists and doctors
Laura Zera on January 2, 2012 said:
Hi Richard! Thanks very much for stopping by and commenting. I value your perspective. It made me think (ruh-roh!). I agree the DSM books exist as tools, and necessary ones at that. It’s elements of the revision process that get a bit unseemly, e.g. in the U.S., whenever they try to put together a panel to work on stuff like this, they have a hard time finding doctors who aren’t also on the payroll of big pharma in some capacity. So, there’s going to be some bias there (as there always is, but this type is particularly distasteful to me). And then to what degree does that bias trickle down through the books and out into the rest of the system? There have definitely been some shifts in how disorders have been listed and diagnoses used, most vividly with kids (giant jumps in the numbers of kids that are diagnosed with a disorder for things that wouldn’t have been given the same diagnosis 20 years earlier).
There are so many different doctors and practitioners out there that clearly the variety in skill, compassion and insight is going to be great, which is another reason why I wrote this piece — to give a bit more info on the pieces (and tools) that make up the system so that consumers go in more aware. I’m a big believer in self-advocacy and asking lots of questions.
I’m not convinced that it’s only the growing body of psychological knowledge that is behind the *vast* increase in the list of disorders. There is more to it (e.g. aforementioned note about bias, etc. etc.) and that part still really troubles me.
Richard Gibbens on January 3, 2012 said:
Thank you for your informative feedback on my comment, Laura. It’s nice to participate in such a proactively moderated debate.
I have to bow to your greater knowledge when it comes to the involvement of ‘big pharma’ and distortions that may arise from commercial interests. Of course I completely deplore this, especially as the record of medication for mental health problems is hardly glorious. (Seroxat springs to mind.) I have no problem with judicious use of medications as a last resort, but see cognitive or cognitive-behavioral approaches in close and respectful collaboration with service users (also consistent with occupational therapy) as offering the possibility of more robust, de-medicalising and empowering outcomes. If as you say the successive DSMs have tended to encourage more rather than less use of medication, then I wholeheartedly share your concern. In light of the anticipated changes to the DSM, it’s ironic that in the UK there has recently been massive State investment (notwithstanding austerity elsewhere) in brief cognitive / cognitive behavioral interventions in primary care, after research unequivocally demonstrated that such approaches are more effective than medication.
Thank you again for this opportunity to share and to learn.
Laura Zera on January 2, 2012 said:
I’m enjoying this debate, too. This kind of conversation has always been my hope for the follow-on from my blog posts.
In response to your comment “If as you say the successive DSMs have tended to encourage more rather than less use of medication” — that’s not what I’m trying to say, although I understand that I’ve kind of make that linkage. I think the ‘slippery slope’ is that with the DSM having more listed disorders, there are more ‘available’ diagnoses, and if someone is given a diagnosis of a disorder, the treatment plan could be more likely to include medication than if they were trying to address a behavior. Does that make sense? If I had an anger issue, I’m more likely to be pointed to a place where I can go talk about it than given a prescription for something to medicate my feelings. But if my anger issue was given a diagnosis of a disorder… and given our current tendency to use medication as the more inexpensive option… will talking it out still be my first option, or will there be a drug treatment for that disorder?
I write a lot based on personal experience, my experience in talking with others, and from the research and reading that I’ve done, which is why I love it when people chime in with their knowledge from working inside the system. I try not to create linkages and causations that are unsubstantiated, but I do tend to ponder things to which there isn’t one clear answer. That’s where the role of the individual doctor/practitioner is going to make a gigantic difference. Each person’s experience will ultimately be different depending on who they see for help and treatment. Perhaps that is who would be most helpful to this debate right now — the people who are making the diagnoses and treatment plans.
I love to hear that the UK has invested in CBT, and of course, that treatment will be available to everyone as part of the health care program. It’s always dicey as to what kind of treatment and support one can get in the U.S. as it all rides on their insurance plan (individual vs. company vs. none!). For example, I know that I am covered for six mental health sessions per year, past that, it’s out of my own pocket. For some people, that limits their options.
Thanks for continuing this conversation with me, Richard.
Richard Gibbens on January 4, 2012 said:
Thank you for helping me better to understand your point, Laura. I do agree that it’s unhelpful to apply a medical diagnosis to what is in fact the healthy (even if deeply distressed) mind’s response to life events, e.g. anger, grief. It’s especially insidious to medicate needlessly for such natural, albeit painful, reactions. It may be obliquely relevant here that one of the aims of the ongoing IAPT program (Increased Access to Psychological Therapies http://www.iapt.nhs.uk/about-iapt/ ) in England is to SAVE money, as evidence suggests medication is not only less effective in many cases, but also more expensive. So current best practice in England would indicate referral to ‘talking therapy’ – not prescription of medication – following a DSM-based diagnosis. (I’m insufficiently ‘au courant’ to know the extent to which this ideal is actually being realized, and am duly wary of the upbeat rhetoric on Government web sites.)
Your explanation of the insurance-governed options in the US certainly are a wake-up call to prize and defend our NHS!
Patricia Jamie Lee on January 3, 2012 said:
I am enjoying the discussion between you and Laura, Richard. It is almost refreshing to see real people engaging in real topics on the net. I have skipped in and out of so many groups because they lacked any real content. I like to think:)
There hasn’t been much discussion of the participation of the insurance companies in this loop. It seems unfortunate that in order to receive care clients have to have a “diagnosis.” I understand it is a kind of fill in the blank thing, but many clients I have worked with take a diagnosis as a self-defining moment that is sometimes both a relief (I have a neurological condition) and sometimes a release of personal accountability (I can’t help myself). We all understand that there are severe and real mental illnesses–this is not a question, but the outer margin of people being diagnosed and drugged are often struggling with real psycho-spiritual issues such as grief, life transitions, lack of communication or life skills, etc. I once had a client with a severe diagnosis who drank three cokes for breakfast and couldn’t understand why she felt jittery and unable to focus.
Thanks for the good conversation.
Richard Gibbens on January 4, 2012 said:
Thank you, Jamie, for sharing your view on this discussion I’ve been having with Laura, and for your kind words about the content.
Your reflections on people’s experience of being formally diagnosed with a disorder are especially interesting. Like you, I’ve seen both positives and negatives at this transition: sometimes helplessness and passivity but, in my experience, more often relief and validation that hitherto poorly understood suffering has been professionally acknowledged, clearing the way for therapeutic work. One of the attributes of Occupational Therapy that keeps me loyal to my profession, even though currently I’m not in practice, is its emphatically holistic perspective on health, eschewing reductionist reasoning and (like you with the Coke-drinking client) taking a wider view of the causes of distress.
Patricia Jamie Lee on January 4, 2012 said:
Hi Richard and Laura,
It is so interesting to be engaged in real discussion online. I don’t feel like I am being totally honest, however. I actually have very strong opinions, backed up by research, that Americans in particular are being sold a bill of goods when it comes to the mental health care profession. Brain chemistry is such an intricate and relatively new field of study that I don’t think we have even begun to understand what is actually going on. There is much debate, for instance, about the SSRI’s which block the re-uptake of serotonin in the synaptic space thus flooding the brain with serotonin. As a result the natural receptors begin to withdraw and, essentially, from that point on the patient is “dependent” on the drug. Research suggests that the damage may be permanent. It worries me that this explosion of the use of psychotropic drugs (especially in children) is leading to a host of other issues and not really addressing issues like diet, schools, shifts in family dynamics, etc. When we drug the children, we seem to be making them responsible for what isn’t working culturally. Again, very worrisome.
I understand that for a patient to be given a diagnosis can be a relief–but at what cost to the overall healthy development of the whole person.
That was my mini rant.
So your profession is occupational therapy. That was the path I first chose when I went to college–veered off in other directions, but it is a great path.
Richard Gibbens on January 4, 2012 said:
That didn’t come across to me as a rant, Jamie. I find myself in complete agreement, and (whilst having no real neurological knowledge) would have similar concerns about chemical dependency. Instead, I feel confident and comfortable with promoting personal fulfillment and health through chosen occupations. How interesting that you started along this path as well. I came to it late, after seeing the health and self-esteem benefits of activity and challenge in the outdoor adventure arena
Laura Zera on January 4, 2012 said:
Just to round out this great conversation, I found another good piece on the DSM-5 that very articulately highlights some of what we’ve been talking about here — the DSM is a book, what matters most is how people use it: http://www.psychiatrictimes.com/blog/dsm-5/content/article/10168/2009407.
Jamie, I have also been reading about brain chemistry and the emerging theories that psychotropic meds are what actually change/damage the brain chemistry to create long-term dependency issues. I don’t think that a lot of people know of these studies yet. Most people that I talk to still talk about the mental disorder being due to chemical imbalances, even though from what I’ve been reading, this hasn’t at all been scientifically proven. It’s an intriguing bit of research to me, though it sometimes seems that those who are digging in that area are treated like conspiracy theorists (hmmm, wonder who starts those threads/rumors?! Ha!).
One piece of research that I’d love to get my hands on (and will look for) is the 2002-ish WHO study of long-term outcomes for schizophrenics in the U.S., India, Nigeria and Colombia. Guess who uses the most meds? And guess who had the worst long-term outcomes? Yup, it’s the U.S.
Anyway, thank you both again for your contributions. This has been great!
Patricia Jamie Lee on January 4, 2012 said:
Hi again. The amazing part is that a lot of this information and misinformation has been growing over many years. Peter Breggins was kind of a whistle-blower many years ago, and you’re right, some of these researchers are treated like conspiracy nuts. When I am teaching others about how their brain works, I explain that it is the nature of the brain chemistry to be in a constant state of balance/imbalance based on stressors, amount of rest, the food we eat, the thoughts we think. A close call in the car can send our brain chemistry out of sync for the rest of the day. On a positive note, there are other modalities like massage, yoga, meditation, music therapies, CBT, etc. that are on the upswing–a good sign that we want to take care of ourselves and continue to grow and develop without chemical help.
Thanks Laura, for posting such an interesting topic.
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