We have arrived at our final installment of the peer-to-peer revolution. I just started my blog a few months ago and wasn’t really sure what I’d end up writing about. As a result of my passion for promoting peer-to-peer platforms to education and mental health, I decided to explore other aspects of peer-to-peer exchange that our going on and launched this 8 part series. Eight consecutive weeks (minus Thanksgiving) of writing 2,000+ words was a big challenge that I didn’t fully appreciate until I was in the middle of it. We’ve covered housing, transportation, energy, finance, entertainment, news media, education, and now… mental health.
As taking on such challenges without understanding or appreciating what I’ve gotten myself into (such as writing this blog) has become a part of my everyday life, it seems fitting to close this series out by talking about mental health. Specifically, peer-to-peer mental health. Just as my personal experience with our education system has motivated me to change it, my personal experience in the world of mental health also motivates me to change it. I will spare the details of my story of how I entered into the mental health system for another post (or series of posts). If you’re curious, you can check out some of my stand-up comedy (flimjannery.com) where I share stories about bipolar disorder, manic psychosis, and running from the National Security Agency among other adventures.
As in my previous articles, I’ll cover what peer-to-peer mental health is, who’s benefiting from it, who’s losing, what the legal implications are, and what the long term consequences of it will be.
So let’s begin with “What is peer-to-peer mental health”? Much like peer-to-peer education, this one is a little harder to pin down because it is fairly new. But it’s also quite simple! Peer-to-peer mental health means improving your psychological well-being by engaging with individuals who have similar experiences to your own. Or, in an even broader sense, engaging with anyone who is not an authority or professional. Just like with peer-to-peer education, this means that just about anyone can offer peer support. And, like education, the role of provider and consumer shifts consistently in peer-to-peer mental health. And sometimes you find yourself in the role of both at the same time (like education).
The simplest example I can give for a peer-to-peer mental health group is Alcoholics Anonymous. Though there was a book published by one of the founders, (Alcoholics Anonymous: The Big Book by Bill W.), the meetings themselves are peer-led. The basic function of the meeting is that members share their experiences with one another and provide support in the form of giving advice or feedback, expressing one has had a similar experience, offering a hand to hold or shoulder to cry on, and, most importantly, simply allowing ones voice to be heard in a safe and non-judgmental space. Support often extends outside of the meetings as well: carpooling, being available for a phone call or a coffee… eventually the relationship can probably be described in a familiar word: “friendship.”
Each meeting has a secretary who runs the meeting, but they are, by no means, an authority in the room. They simply facilitate setting up the space and getting the meeting going. There is nobody who claims to have the right answer or to be giving absolute advice. Nobody claims to be an expert. Rather than floundering without any leadership, the group finds collective support through all of its members. They lean on one another for strength. One may show up to the meeting because they feel that they need help. And while they are there, they end up providing support to someone else. And that, in itself, helps them too. It is good for one’s self-esteem and confidence and general well-being to have the satisfaction of helping someone else. Especially when it often feels so easy!
Oh ya – did I mention that the peer support is free??? They do accept donations at groups like AA, but it is free. Compare that to seeing a therapist or doctor, who, without health insurance coverage, can cost hundreds of dollars an hour. Paying that bill would depress just about anyone.
How successful has Alcoholics Anonymous been? It’s hard to say. While there are over 100,000 groups worldwide, there is much inconclusive evidence about how effective they are. The trouble is having an independent and dependent variable to measure, as well as other treatment options to compare to. The dependent variable is pretty easy: the simple metric of “Have you had a drink?” should be a good measuring tool for “success.” But what if someone joins AA and falls off the wagon many times over a few years and eventually becomes sober? Or what if they stay sober for 40 years and have a lapse for a few weeks before returning to sobriety? Is that a success? Even the independent variables are all over the place. Should we look at the impact of every single person who has ever attended a single meeting? Or those who attended for years and stopped? Or what about people who both attended AA and got “professional” support? And what do we compare AA against? Is there an alternative that we can say is more or less successful?
I cannot emphasize enough, that when expand beyond sobriety and talk about mental health as a whole, the measurements are far more challenging. Look at the latest DSM (Diagnostic and Statistic Manual of Mental Disorders) and you’ll see it is nearly impossible to accurately diagnose people when all of the symptoms are subjective. Depression, for example. How do you determine that someone is depressed? How do you determine if they are no longer depressed? When they report feeling better? For how long? A day? A week? A month? And how much “better” do they need to feel to be deemed “well”? A simple “Tell me how you feel from 1-10” doesn’t seem that strong. You can monitor peoples’ sleep, eating, weight, exercise, and frequency of social interactions and get a feel for how they are doing. But it’s still very challenging to measure. And the challenge becomes increasingly difficult when we get into diagnoses like anxiety, schizophrenia, attention deficit disorder, bipolar disorder, and others. And it becomes even more challenging when we see that people often experience “symptoms” of multiple conditions laid out in the DSM at the same time. You may end up being diagnosed with something like “schizoaffective disorder mixed type,” implying that you have symptoms of mania, schizophrenia, and depression all at once. Hmmm… I’m trained as a scientist to identify bull shit when I see it, but hopefully your average person will be able to see how unreliable this method is. I hope that by the end of the article you’ll see that it is also unnecessary.
While I’m writing about all the benefits of peer-to-peer metal health and while I did just hit the five year mark for not drinking, I can’t claim to be a member of the AA club. (I did consider showing up for my one-year cake!) Through a court-order in 2010, I had the luxury of attending a few meetings by force. Though I loved the peer-to-peer aspect, something about it rubbed me the wrong way. I didn’t feel they were a fit for me. I’m not sure why. The most likely reason is I didn’t like attending because I was forced to attend. I may have felt I couldn’t relate to the crowd because my life didn’t feel nearly as fucked up as many in the room. I may have been turned off by the religious connotations of the idea of the “higher power.” Or maybe just to the overall concept of having to “admit” that I was “powerless” against this “disease.” I ended up quitting drinking a few months later and haven’t had any issues with it. Unfortunately for the credibility of this article, I can’t claim to be an AA success story.
I did attend a few Marijuana Anonymous groups by choice back in 2013 (these are a lot less popular). I had stopped smoking weed and figured I’d give the groups a shot since it was a much more challenging endeavor that quitting drinking. While I felt like I related more to the members of this group, I didn’t keep attending. I think part of the reason was that there weren’t enough people for a solid group – almost nobody would show up to the meetings!
I think me sharing that these drug abstinence groups didn’t benefit me much might bring some value to me sharing what has worked, namely support groups related to more “severe” mental circumstances. I was diagnosed back in 2010 with bipolar I disorder. I still don’t know if I can acknowledge this as a real disease or disorder. In no way do I want to give credibility to this diagnosis, but language is convenient. As you’ll notice in this article, I put quotes around words a lot to somewhat designate that the word I’m using is a bit fluffy and not ideal. So I continue to use the term “bipolar disorder” just meaning that’s what doctors have labelled it. I can’t claim to be “normal,” but I lack a better word to conveniently describe my brain in a one or two word diagnosis. And fuck them for including the word “disorder” in their label – uncreative bastards. I’ve also had other labels professionally attached to me like “schizoaffective” and “psychotic,” but usually bipolar. (The lack of consistency amongst these medical “professionals” should raise a “bull shit” flag on their system) Bipolar disorder has a reputation of meaning people are really happy one day and really sad the next. The experienced I’ve had which led to my diagnosis were not really of this nature. I still don’t know how to describe my experiences with words. I can certainly recall and describe the things I did and some of the thoughts I had. But I still don’t have the right language to describe all of this stuff. The best I can do is suggest you eat some hallucinogenic mushrooms (in a safe, controlled environment). That experience is pretty similar to my “crazy” experiences that have occurred naturally.
Which is a problem. You’ve got a major thing going on in your life. All these “professionals” telling you one thing, yet the research you do shows that what they say isn’t based on much fact. So where do you go for support when the professionals are clearly doing it wrong? The system is fucked! So what happened? I looked for answers… and found them through peer-to-peer support.
One of the first things I came across in my journey was a book and YouTube channel created by Sean Blackwell. (videos 1-21 are particularly insightful) Sean had an experience which doctors labelled as bipolar disorder and he wasn’t convinced he was ill. So he, an amateur/non-professional, began doing his own research. He went beyond the traditional medical American medical literature and looked to see how other cultures throughout the world and history were addressing mental health. He came to some very profound conclusions about a spiritual interpretation of “bipolar experiences.” I learned as much or more about mental health from these YouTube channels than in any of the medical textbooks I’ve found. And Sean is a peer of mine who I am thankful to have found. Since Sean has received a lot of attention for his work, and stands confidently behind it, he can appear to come across as an authority on the subject of mental health. If you speak to him (and I suggest you do), you’ll realize he is much more a truth-seeker who aims to share what he knows, acting only as an authority on his own experience and possibly the culture-based research he has done, not on medicine.
Through Sean, I came across an online peer-to-peer mental health network, called New Light Beings. In their forum and chat rooms, I encountered people across the globe with unique “crazy” experiences I could relate to. They couldn’t fully understand what their experiences we were, but they certainly didn’t claim them to be disease. Together, without the labels and structure of the standard medical field, we explored these issues and provided support to one another. Nobody claimed to be an expert. Sometimes you needed help and people were there for you. Sometimes you found yourself helping others. At the end of the day – the group functioned the way one would hope all of society would function: as a group of supportive, non-judgmental friends trying to figure things out this world together. Again, someone created the forum and moderated it, but there was no authority.
I found another organization, called Wind Horse, which promoted alternative treatments for mental health conditions (notably schizophrenia). They believed in “treating people with people” rather than medicine. Not to say their clients aren’t on medication as well, but the Wind Horse model is to provide people with human interaction as a form of medicine. I haven’t seen any statistics to support their success rate, so most of my data is anecdotal, but they appear to be quite successful.
While I was never formally a client at Wind Horse, it was through their community that I came across the Hearing Voices group: a peer-to-peer support group for people who have had extreme experiences of one form of another. They try to avoid labels, but many of the group members fall within what most would describe as schizophrenia and bipolar disorder. There were facilitators for the groups, but there was no authority. We would do our best to find the language to share out experiences, sometimes described as mystical, sometimes as traumatic, sometimes as illness, sometimes as a gift – but there was nobody who claimed to have the answers. Everyone’s experience was different but we were all on our own path trying to find understanding and meaning for ourselves. . But the peer support group was a safe, comfortable space where people could speak without concern for judgment. That was one of the great strengths of the peer-to-peer community, there was never a concern of judgment from the authority figure who had some type of power to manipulate you or shame you. Sometimes you’d be helping others, sometimes they’d help you, and the relationship often extended beyond the groups, and could be described with a simple word: “friends.”
Hearing Voices groups are very common in Europe and are beginning to take hold in the US. People in Europe, and basically every other country on earth, treat mental health very differently than in the United States. In other countries, people are defined as people and their experiences are considered part of the expected human experience. In the U.S., the same experiences are labelled as being the consequence of a defect in someone’s physiology. As if failing to achieve perfection is a disease, or, worse, a genetic disorder.
The Hearing Voices groups began in Holland. Some psychiatrists who worked together had a waiting room in their office where patients tended to speak to each other. The doctors were discovering that the patients were getting more benefit over the time spent they spent interacting with other patients in the waiting rooms than they were from their psychiatrists. And so, they began holding meetings where these people could get together and discuss their experiences. And, with their success, the groups are becoming more common.
Let me point out that the United State is far beyond the rest of the world in mental health. People here are diagnoses and drugged, and often locked up in institutes. And that’s not to mention our prison system, another obsolete institution. In some parts of the world, psychotic experiences are viewed as a spiritual awakening. An experience, possibly frightening, but which brings value to one and is celebrated. People here just seem to be treated as if they are disposable. If there’s something wrong with you, you’ll be dismissed and treated like shit, so why would anyone feel comfortable expressing themselves. Americans, as a society, are proud to a fault, ashamed if anything is wrong with us, and judgmental of anything that is wrong with someone else.
Another group I’ll point out is the Massachusetts Recovery Learning Community. Another peer-to-peer organization that has been working wonders for people. More groups organized to “treat people with people” rather than with medicine. The community comprises of people from all walks of life, struggling with depression, anxiety, drug use, bipolar, schizophrenia, etc… and through one another find support and they thrive. It is a damn shame that state of Massachusetts cut their funding in half this year, despite our showing up at the state house with signs and megaphones. These groups are great because they prevent people from ending up in hospitals and prisons, which are a huge financial burden on the state.
Let me throw one more interesting case out: the Soteria Project. Dr. Loren Mosher founded the Soteria Project to create an alternative facility in San Francisco for people to go who were undergoing psychological crises, with notable success with schizophrenia. They never used restraints or medications (the norm in the U.S. today), they just offered to be there for people. They would orovide food, conversation, a place to sleep, and moral support. And they were highly effective. This project started in San Francisco in the 1970’s, and today… it’s almost nonexistent in the United States. You’ll have to go to places like Sweden, Germany, or Hungary for help like that.
In fact, several members of the group were in town last year for the Mad in America Film Festival and interviewed on a panel. They couldn’t even comprehend the concept of our mental health system. It was reminiscent of how we hear that Native Americans didn’t understand the concept of land ownership when the Europeans arrived. People in the audience (Americans) would ask, “So what is your solution to mental illness? What do you do? How do you do this??” And they just replied, “umm… we just, you know, talk to people? Hang out? They need someone so we’re there for them. This is really simple stuff, folks, how do you not get this?” And the Americans just couldn’t seem to wrap their head around it. “You mean you don’t do something miraculous to ‘fix’ the patients? You don’t drug them? What exactly do you do again?” Again, the Europeans were confused by the lack of insight the American audience had. “Well, first, we don’t call them patients. They’re just people. And they’re having a hard time. Going through something we don’t really understand. So we just stay with them and when they feel they don’t need help anymore, they leave. It’s not that complicated.” I should backtrack on saying the Americans lacked insight… I think they were just so convinced by the medical community that there was a medical problem which needed solving with pharmaceuticals that they couldn’t comprehend such a simple solution. It wasn’t their fault – they were entrained to think like that.
Yes – peer-to-peer mental health is really the simplest idea ever: you just treat people like people. Who is gaining from this change in approach? It’s clear that the patients are winning. They are getting better care and it is far cheaper.
Who’s losing? I am actually not too sure about this. It would seem that doctors or therapists could be losing. But I don’t think that is the case. From what I’ve seen, doctors and therapists are overwhelmed with patients and are frequently turning away clients. There are too many coming to them for help who don’t know of any other solution for their problems. So it doesn’t seem to be hurting doctors if people are finding support in other places.
One loser: pharmaceutical companies – hopefully… one day… the revolution needs to make some big moves before the pharma companies are going to feel any impact. But I like to think that as people start seeing one another as people rather than as flawed specimens, there will be a reduction in diagnosis and prescriptions. This would hurt pharmaceuticals, who tend to be the dominant force working against peer-to-peer support. After all… if people realize they don’t need these “lifestyle” drugs, what will happen to them? And keep in mind that pharmaceutical companies have been making a lot of money on “lifestyle drugs” (from Viagra to antidepressants to ADHD medication).
Who is cashing in on the revolution? I don’t think anyone is. I think the power of the revolution will take away from the unnecessary pharmaceutical companies and put that power and money back into the hands of the people who need help. Keep in mind that most of the peer-to-peer support groups are free.
And what are the long term consequences of peer-to-peer mental health. The long run looks beautiful. As more of these groups form, more people will get the help they need and there will be far less reliance on professional support. People will be treated as people rather than cases, and humanity will reign supreme. There will be less diagnosing and drugging and more communication and compassion. As people speak about their experiences more openly they will come to find similarities with others and connection and reduce the solidarity they are stuck with. And hopefully better language will be developed to describe people’s feelings and experiences.
I think the prevalence of these mental health groups will also improve the way people interact with each other as a whole society. As I mentioned earlier, eventually we see that all that is happening here is people are treating one another as friends. This is not rocket science, it’s just a shift in our perspective of what people are and how we interact with them. Treating people as valuable and not dismissing them or shaming them. This has already started happening in other countries, and hopefully will begin to happen more in the U.S.
Unfortunately, I think things are going to get worse before they get better. There is the old story about the frog in water – if you put a frog in boiling hot water, he jumps out immediately. But if you put a frog in cold water and slowly raise the temperature, he will sit and boil. And that seems to be the metaphor that makes the most sense for the current state of affairs. People are diagnosed, shamed, and locked away. We hide our homeless, lock up our “criminals,” lock up our “mentally ill,” and don’t speak about it because we are ashamed or embarrassed. And it helps us forget they exist since we don’t have to look at them.
I predict that the circumstances will get worse and worse until….. something. More people are being diagnosed and drugged and it’s often happening to children, with one in ten having a mental health diagnosis. Courts are able to force medication on patients while in hospitalsand now almost every state has made it legal for police to come to your home and force you to take pills. Irony: this is called “Assisted Outpatient Treatment.” It’s good to acknowledge mental health as a thing we should pay attention to – but it’s horrible to do so in the over reactive, fearful, and lazy way of diagnosing and drugging.
I am optimistic about the long term – as the peer-to-peer revolution continues to march on, we will all become more connected and we will all benefit. I’m happy to have concluded my eight part series with the one portion of the peer-to-peer revolution which does not require fancy technology or scientific discovery or huge financial investment. It actually results in less use of technology (pharmaceuticals). Changes in the mental health system are, therefore, the easiest ones (physically) to implement, but require the greatest change in human behavior. Hopefully the changes in how we interact with strangers with regard to housing, transportation, finance, energy, entertainment, news media, and education will help make the transition smooth and painless.