Editor’s Note: The high-level summary document, “Why the Current Mental Health Care Model Must Evolve,” is available here.
In September, 2020, I shared something on social media related to mental health. I mentioned that we need to look at the health of the systems that a person is in and their personal history if we are to make any real advances in helping people who are in mental distress. Someone whom I never met commented matter-of-factly that mental “illnesses” are problems with the brain and biochemistry.
As someone who endured what I have long called a “severe stress breakdown” in 1998, I knew the damage from trivializing psychological distress as “illness” or “disorder” that is merely biochemical in nature. I have shared freely on social media about my past experiences and how I was additionally traumatized by the mental health system. I was misdiagnosed as having bipolar disorder, which I knew all along was incorrect.
That diagnosis was made without any effort to understand my personal history of trauma, nor the unhealthy dynamics I was conditioned to and was crutching at the time. Ultimiately, that breakdown was much more of an awakening—a breakout from those unhealthy dynamics and ultimately a breakthrough to a much better life.
The dismissive nature of that comment upset me. The person who commented was just spouting what they had heard or read or had been taught from who-knows-where. That person certainly didn’t understand how disastrous that model of “illness” is to many people dealing with past trauma. Often that diagnosis of so-called “illness” is life-long with no cure. Chronic. We label that which breaks, rather than the systems and dynamics that break people open.
I had bought Robert Whitaker’s book, Anatomy of an Epidemic, a few months earlier. I bought it on May 18—the anniversary of my middle brother’s death. He died in 1999, after dropping out of sight nine years earlier. At the time of the breakdown in 1998, I didn’t know if he was alive or dead. His leaving was a significant layer of stress that I couldn’t do much about. In time, I ended up heaping more and more stress on top of that layer. Eventually, everything collapsed.
When I bought Anatomy, I looked through a couple of chapters, but didn’t read the whole book. Due to my triggered response in September, I finally read the book cover to cover. I treated it as a textbook and made notes in the margins and wrote all over it.
When I finished with the book, I felt like I had been blasted from a firehose, completely drenched with the comprehensive research and material Whitaker presents. The book is meticulously and thoroughly researched and weaves together a massive amount of material. The problem was that while I could share and recommend the book to my friends on social media, I knew that very few of them would actually purchase or read it. The material was too detailed and comprehensive for most of my friends who had not been ensnared in the mental health system as I was. I didn’t have an easy way to share the most important key points, the most “core” material, to a wider audience.
I looked at the Mad in America website and reviewed the material in the education section. I found several useful presentations, trainings, and webinars. Yet, again, the material was more detailed than what a member of the general public would view. I needed something more condensed and concise. I wanted some “cheat sheets” that summarized material at a higher level and could be read through in a few minutes.
From the Mad in America website, I came across the name and phone number of Bob Nikkel, who served as the Education Direction for Mad in America at the time. I called Bob to ask if more concise material was available on the site. I told him that though I thought that Anatomy of an Epidemic was fantastic, I was wondering if there was a short document that could be shared and more easily consumed by a member of the general public, to people who weren’t very involved with the mental health system. I told Bob, “Don’t get me wrong. The material is great. There is just so much of it. Where are the Cliff’s Notes for Anatomy of an Epidemic? I need the Cliff’s Notes.”
As I described more of what I was looking for, Bob realized that having a high-level document of key points could be useful. A document of a few pages that presented the most key items that could summarize why a book like Anatomy of an Epidemic is so important. Such a document could help people wade into the shallow end of a swimming pool in a sense, rather than throwing them into the deep end of a pool and risking drowning them in so much information.
I also told Bob that I used to work as a Knowledge Engineer. (Yes, that’s a real thing.) I managed what is called a knowledgebase for the company I used to work for. A knowledgebase, sometimes called a “KB,” is a collection of hundreds of question-and-answer pairs, also called knowledge articles. A knowledgebase is often used in the customer support section on a website so that customers can view and search through the information quickly to find answers related to their products and the services that a company provides.
A knowledgebase typically starts with a fixed, static list of frequently asked questions (FAQs) and then grows over time. As more and more questions are added to the knowledgebase, the static list is often is no longer efficient, nor sufficient, for people to easily find information. Additional tools are needed to dynamically present the most used material at the top with less used material settling toward the end of the list.
In time, some knowledge articles evolve as being most important due to usage and are often strategically placed on a website so that users can find that material most easily. In addition, articles that summarize larger amounts of information are often used as a way to help people navigate into more detailed content.
Bob suggested I take a stab at creating the high-level document that I was looking for. He offered to help by reviewing and providing input and critique to my effort.
Initially, I began compiling my notes that I had marked in Anatomy of an Epidemic. After reviewing the first six chapters, I had compiled 24 pages of notes. Well, crud, that wasn’t going to work. At that point, I did a quick calculation of the Reference Notes section from Anatomy. There were more than 700 reference notes! Good grief! I needed a different approach.
Next, I looked at the mission statement from the Mad in America website, which states:
Mad in America’s mission is to serve as a catalyst for rethinking psychiatric care in the United States (and abroad). We believe that the current drug-based paradigm of care has failed our society, and that scientific research, as well as the lived experience of those who have been diagnosed with a psychiatric disorder, calls for profound change.
From that mission statement, the next logical question was “How has the current drug-based paradigm of care failed our society and what kind of change is needed?” I keyed off the phrasing of the mission statement that mentions five areas: drug-based paradigm, failed our society, scientific research, lived experience, and profound change. These five phrases became the primary areas to develop further. Since I am not a mental health provider, I was thankful that Bob could validate and clarify the content that I generated.
Bob and I met every few weeks via Zoom to review and update the document. Over the span of a few months, we had a six-page document. Each of the main sections had bulleted list items, and each list item included text to further describe the point made. Since Bob served as a commissioner for both mental health and addiction for the State of Oregon from 2003 to 2008, he knew that the document was still too long for people making policy decisions. “It really needs to be no more than two pages,” he told me.
Ugh. Was he kidding me? No, he was serious. I had been trying to be as concise as possible. How on earth could I rip out two-thirds of the already-condensed material?
I pulled out the supporting text from each list item. Voila! That resulted in a document just under two pages. Bob and I edited and modified a few sections to smooth out some rough edges. Bob even sent a draft of the document to Robert Whitaker, and, thankfully, he also saw potential in this type of summarization. I added a third page of reference material which both validated the content that I had condensed, but also provided material that readers can research if they so choose. That is, they can wade deeper into the material if they want. Of course, I referenced both Anatomy of an Epidemic and the Mad in America website.
Is the document perfect? Of course not. Yet it is a reasonable effort to summarize why the biomedical model has failed people so frequently and why many people diagnosed as having a long-term “illness” or “disorder” reject that diagnosis so vehemently. Bob Nikkel has shared the document with multiple people he knows from his work. Each section could expand into separate articles with more detailed information.
I feel that there is plenty of material describing the problems with the current diagnostic and treatment models. How that material is organized and summarized can potentially benefit how that material is presented to the general public. Due to the marketing of pharmaceuticals in the US, many people still believe in and support the “disorder” model or that mental distress are “illnesses” and should be treated as such. Many people still believe that such chronic illnesses are caused by chemical imbalances in the brain. Organizing and summarizing how the system has failed and harmed people could be useful tools to re-educate people.
Please don’t misunderstand me. Do I think people’s individual stories are important? Absolutely! Do I feel the presentation and critique of specific studies is important? Definitely! Do I think the books published and interviews are important? Most certainly!
Yet those are all pieces of a much larger and comprehensive collection of information—in short, a knowledgebase. Compiling and summarizing the most “key” information into more comprehensive articles or documents can effectively educate members of the general public. Compiled information could include key statistics, studies, quotes, books, resources, and more effective models that are key in understanding why so many people recognize the need for change or have been harmed in the application of an inappropriate model.
Having material at the 500-foot level, the 2000-foot level, and at the 5,000-foot level or even higher is often useful. It is easy to get pulled into the details at the 500-foot level and lose sight of a much larger landscape. Comprehensive, “bare-bones” material is often valuable in educating people who are not as involved and don’t understand why such a movement for reform exists and is important.
The process of replacing the old model is already happening. We are in a period of transforming the models related to providing assistance to people going through mental struggles and crises. Momentum is definitely building to get to a tipping point for developing and promoting better models and tools for assistance. The more people who understand the problems and damage that the dominant biomedical model has caused, the more momentum builds towards bringing about change that is so desperately needed. Consolidating and summarizing the most key elements and content can help educate more people as to why so many people are calling for change.
Final note: Through my experiences, I often noticed underlying connections and synchronicity. For years, I have made connections with my name and money. I noticed right away that I was working with a man whose last name is Nikkel. Penni and Nikkel. In the US monetary system, those are the smallest components of “change.” Nice connection.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.
The service you are providing is fantastic. Your description of the need and the solution resonates with the felt need of us newbies. We can plan to adapt your approach to our own writing challenges. I look forward to seeing the new tool you have created.
Hi Daisy, Glad you like the approach. I hope that some people find it helpful. I couldn’t tell by your comment if you saw the link to the summary document at the top of the article: https://www.madinamerica.com/wp-content/uploads/2022/08/Why_Current_Mental_Health_Model_Must_Evolve_2022.pdf.
Thank you, Penni, for taking the time and effort to create this succinct document. It is exactly what I need to pass on to my colleagues.
Glad to hear that it will be helpful to you. I hope it opens up some discussions that are useful.
The boundary between complexity and simplicity is how we arrive at either the grotesque or the beautiful. An orchid would be grotesque if it had any more gaudy fuss adorning its simplicity of form. That boundary is important. Tilt too far over it and you end up with a created density.
I am apt to ponder why it is that the human game of logic lures them to make textbooks to be more and more complex, chapter after chapter of logic arguing with other logic, until it is an impenetrable fortress none can enter without a university degree? It even needs summaries to provide hand holds and pathways for those in a hurry and needing a simple conclusion. Humans do this dance between the complex and the subtly simple all the time yet often fail to get the balance between them just so, a botanical balance that arrives at a beautiful literary orchid, a choice mysterious blend of simplicity and intricacy.
In my life I am trying to dispense with logic as much as I can and only achieve simplicity, but what any writer fears most is not being understood. However, the human has many ways of understanding. There is mind based rational understanding, but there is a more ancient animalistic intuitive emotional understanding, and a common sense understanding, and a mystical psychic bewildered understanding. I prefer rotten writing to excellent writing. Its roots give better mulchy mushroomy compost for my own innate understanding.
Penni, it sounds like a huge undertaking to create such a document, and I definitely see how it could be a helpful introduction for people to the reality of the mental health system.
I may be cynical, but in my experience, there is a problem not only with educating people about the problems with the system — there’s also the equally large problem of people not wanting to know, of people rejecting information that goes against their long held beliefs/assumptions. This was very apparent to me recently, with the release of the study showing that depression wasn’t caused by low serotonin. I noticed, reading articles and comments online, that a lot of people reacted with anger to this study, and sometimes mocked it (an article in Rolling Stone that focused on right wing media and conspiracy theories rather than the plain information that serotonin deficiency does not lead to depression, and what that means as far as the mental health system was a case in point). I find that even people who have been harmed by the system can be very resistant to hearing anything different than what they’ve been told for decades. I also had my eyes opened by Anatomy of an Epidemic. After I’d finished reading it, I was having tea with a neighbor (a person who had been diagnosed at age 20 with schizophrenia, put on a high dose of Haldol or thorazine, hospitalized for a year, and had more recently been rediagnosed with bipolar disorder, and was still on psych drugs, just different ones) and I talked at length about what I had learned from the book. My neighbor got very quiet, and we said good night. A few days later, she told me that I had made her extremely upset with the things I’d said, to the point that she binge ate after I left her apartment. Then she said to me, “I think it’s important for people to tell you the effect that you have on them.” (In my mind, this was a not very subtle reference to my diagnosis, borderline personality. She was blaming me for trying to share information with her about what I learned.)
I hope the document is read by people who have the power to change things, and I hope that they are willing to put in the time to learn more.
Katel, Thanks for taking the time to write out your comment. I think the whole concept of models and understanding of what happens to people can be quite complex. Add into that the power of the mind and belief systems of the person seeking help, it gets even more complicated. As a statistician, I look at multiple factors that should and probably do come into play, much more than dominantly focusing on the biochemistry.
There are elements of trust involved by the person seeking treatment. There are also elements of anger by a person that could rise up in a person who has invested so much time and energy trying to work within that diagnosis and model. It sounds like your neighbor has been through quite a bit. And she has worked to get to a point where she has come to a sense of peace or balance with course of treatment. That leads to a place of paradox.
It is certainly not my intent to upset people — and yet it is upsetting to learn that there are other resources and tools there that might very well have led to a different beneficial outcome. That is a hard thing to learn. Only last year, I learned that four years before my experiences, a diagnositic category called “Spiritual and/or Religious Problems” was added to the DSM. Considering my experiences did include feeling the souls of two friends help me at the lowest points and feeling significant spiritual energy, and considering that through the ordeal, I worked with more than 10 different degreed mental health professionals (some were member of the Employees Assistance Program at the company where I worked) — you might thing that SOMEONE might have said, “Gee, she is talking about her dead friends and spirit and energies. Maybe this ‘Spiritual and/or Religious Problem’ thing is something we should consider.” At the time, I didn’t even know what the DSM was nor why it was important in getting my insurance to kick in.
So, yes, I understand why people can get angry. And in many cases, they should be angry. While it isn’t my intent to upset people, it is also upsetting to me when I get mislabeled and misdiagnosed due to the overemphasis on biochemistry.
I do think that in the long run, it comes down to a question of ‘How do you identify?” If you identify has having a disorder or illness, then maybe you do. But that doesn’t mean I do. There are many other better ways to define and describe my type of experience.
Thank you for your reply, Penni. I think the document is a great idea and I hope it gets the attention it deserves!
Apologies if my earlier comment came off as negative — at times I do feel cynical. It’s a very important document and you’ve synopsized the main points so well. I can see people who have a lot of power but little time really having their eyes opened by it.
It didn’t come across to me as negative. I do feel for you neighbor. I see her response as a type of trauma response. Overall, we don’t address trauma and stored trauma appropriately at all.
Just a note that I get a lot of synchronicity and “signs” of connection. After I typed up my last response, I left to run some errands. I got in my car and as I pulled out on to the street, I flipped the radio station — just in time to catch the last lyric from John Cougar Mellencamp — “I fought authority, authority always wins.” I laughed out loud, because I recognize the power dynamics, and even abusive systems and how much damage they can cause. 🙂
Thank you so much for this effort. Very helpful!
Thank you for your comment. Glad to know it can be helpful.
Thank you for this excellent condensation of “Anatomy of an Epidemic”, Penni and Nikkel–it makes a lot of sense (cents)! Seriously, I too have recommended “Anatomy…” to various people, but although it is an excellent, well-documented and very readable book, many just don’t have the time. I think this could help “get out the word” to more people, and maybe whet their appetite for more detail.
Thanks, Russel, for your feedback. Like many, I am trying to figure out how I can best help with bringing the much needed change to an area where way too many people have been harmed. Hopefully, by condensing material for a more general audience can help do that.