How We Talk About Our Struggles
In the spring of 2007, in a cafe off of Shattuk Avenue in Berkeley, California, I found myself sitting across from my close friend Alissa. “My cousin was just diagnosed by one psychiatrist as schizoaffective,” she told me, “a second psychiatrist diagnosed her as bipolar, and a third with borderline personality disorder. Can you help me understand what’s going on here?”
I could understand Alissa’s frustration; she was seeking to understand her cousin’s suffering and she wanted to be able to trust those aiming to help her. She came to me in part because I had some knowledge in the field—along with years of working with distressed homeless populations, I had recently dropped out of a Ph.D. program in clinical psychology.
I left the graduate program because I needed more community, and also because I had deep concerns about the scientific and political integrity of mental health treatment in America. I shared with my friend that as a result of my studies I was concerned about the accuracy and values that underlay modern psychiatric diagnosis.
I first developed this concern when I was working with homeless populations in Seattle, Washington. One day I asked a long term resident of the shelter why he seemed glum. “Because I am bipolar,” he replied. I felt scared hearing this. I feared that if he saw “bipolar” as something he was, it would, by definition, never be something he could change. In my experience, choosing to see mental health through the lens of a static diagnosis which defines our identity, as opposed to a temporary and personally meaningful struggle, blocks our ability to shift internally and seek solid support.
I later learned that multiple scientific studies have confirmed that, in general, two psychiatrists who interview someone independently and do not confer are not significantly more likely to agree about a diagnosis than they would if they made purely random diagnoses. 1 I also worry knowing that it was not until 1973 that homosexuality was removed from the standard guidebook containing diagnostic categories of mental illness, the DSM. Similarly, in the 1990s the psychiatric establishment pushed to establish premenstrual distress as a mental illness. Indeed, a recent study showed that the overwhelming majority of people who served on the scientific committee tasked with defining mental illness have received direct funding from drug companies. 2 This situation raises similar concerns for me around accuracy and bias that I feel when I look, for example, at the funding of modern US elections.
My reading of the history of psychiatric diagnosis suggests, unfortunately, that cause for such concern is not a recent phenomenon. Many of the terms we commonly employ, “schizophrenia” for instance, date back to a dark period in European and American history when doctors and other medical professionals, motivated by the philosophy of eugenics popular at the turn of the last century, engaged in forced sterilization of people diagnosed as mentally ill. Indeed, The New England Journal of Medicine and The American Journal of Psychiatry (to this day two of the most respected journals in the field) published editorials in the 1920s that were supportive of Hitler’s forced sterilization program and eugenic approaches to mental illness. 3
How can we talk about mental illness and distress in a way that preserves individuals’ humanity and supports community? Overall the evidence suggests that human distress and madness are not comprised of distinct diseases, but rather that they are better construed and studied as clusters of individual symptoms. These symptoms can be described perfectly well in natural language, which has the potential to be much less stigmatizing. 4 For example, I would request that my fellow communitarians consider moving away from describing themselves with static diagnostic categories like, “I am (or have) ADHD,” and instead say, “I struggle with distraction and impulsivity.” Likewise, instead of saying of someone, “She is clinically depressed,” we can choose to say, “She is experiencing deep sadness and a desire to withdraw socially.” I have found Marshall Rosenberg’s writings and his model of nonviolent communication to be an excellent resource for shifting language. 5 I believe that such language, which focuses on personal feelings and needs, is not only more scientifically accurate, it is also more empowering and more aligned with the values of the communities movement.
What Really Helps? Faked Concussions and Real Caring
When a person in distress receives care and is helped, what exactly is it that helps? Journalist Gary Greenberg offers the following story of a participant in a clinical drug trial. 6 Janet Schonfeld had suffered from serious depression for more than two decades when she read about a trial for the antidepressant medication Effexor. She felt hopeful and excited about the possibility of a cure, and within a few weeks of enrolling in the study she was relieved to feel fewer feelings of worthlessness and suicidal ideation—a dramatic improvement. She also experienced nausea, one of the drug’s known side effects, leading her and her nurse to assume that she was receiving the active drug.
However, at the completion of her six-month participation she was alarmed to learn that she had been taking an inert placebo and that her improvement could not be attributed to pharmacological action. If, as the drug companies would have us believe, a chemical imbalance in her brain had been corrected, that correction had happened without the assistance of any drug. Her story is not an isolated incident, as more recent studies (which include information drug companies attempted to hide and which was obtained via the Freedom of Information Act) have also shown that SSRI depression medication consistently fails to outperform placebos meaningfully. 7 The surprising and powerful takeaway here is that even in situations where people think they are being helped by a chemical agent, it may well be those steadfast communitarian values of hope and concerned attention that are actually what is healing.
A similar tale unfolds when we look closely at Electroconvulsive Therapy, a form of treatment made famous in Ken Kesey’s One Flew Over the Cuckoo’s Nest. In ECT (commonly known as electroshock or shock therapy) a strong electrical current is passed through the brain of a patient, deliberately inducing a concussion. Patients often report large improvements after receiving treatment, but also (not surprisingly) tend to suffer additional negative neurological effects. However, as with Janet Schonfeld’s story above, patients who have their heads shaved and receive anesthesia but receive no electrical shock show the same improvement. 8
If it is not the drugs or the electrical shock that is helping people get better, as these results strongly suggest, then what is it? I believe that the healing comes both from having the caring attention of the doctors, most of whom are compassionate people who chose their profession to help people heal, and from being able to engage in a healing ritual.
What does this mean for the communities movement? I believe it means that in most cases we can work to largely (but perhaps not entirely) replace the mainstream medical treatment of mental illness, and that we can work to build our own rituals of caring, healing, and support. (NOTE: I strongly discourage abrupt withdrawal from psychiatric medication. Please shift current treatment only under the direction of a licensed medical doctor who is sympathetic to your needs and reasons for doing so.)
By analogy, in most cases folks can lose weight with sensible eating and exercise, and it is only in rare cases (such as thyroid malfunctions or the rare condition known as Prater Williams Syndrome) that there are medical reasons that people cannot maintain a healthy weight. Similarly, in most cases we can take care of our own mental health. We can look to feelings and needs and seek to establish habits of healthy living, rather than trying to correct malfunctioning neural synapses.
One might protest that this can make sense for the average worried neurotic of the Woody Allen variety, who maintains relationships and a job, but not for the more deeply disturbed. Even in these cases, however, I think there are viable community-based solutions. For example, World Health Organization Studies show that people who experience a first episode of psychosis (e.g. serious delusions, hallucinations, or hearing voices) in the developed world are more than twice as likely to end up having those experiences chronically as their counterparts in India, Nigeria, or Columbia. 9 These countries often have stronger webs of community and extended family support systems, and they also make room culturally for intense distress to run its natural course.
Inspired by tales of human connection with those struggling with psychosis, Loren Mosher, M.D. has created experimental healing centers known as Soteria houses to provide a low- or non-drug option for the treatment of first episode psychosis. In these homes, people in the throes of a mental health emergency receive round-the-clock empathy from compassionately attuned, nonprofessional caretakers. Randomized clinical studies tracking the outcomes of the people who undergo the Soteria project show that they do better than those receiving traditional medical care. 10 I believe that this shows that even in the most dire of cases (the psychiatric emergency of a first psychotic episode), creative community-based solutions can perform as well as or better than traditional medical alternatives.
Who Really Helps: Professionals, Amateurs, and Amore
In the late 1970s Hans Strupp, a professor of psychology at Vanderbilt University, heard the following concern from a colleague: “How do you know that training works—that people would not get just as much help getting well talking over their problems with a kind, intelligent layperson as they would with a Ph.D. psychologist?” Strupp was intrigued by the question and designed a study to test it. College students enrolled in a program for free psychotherapy. Half of the students received therapy from Ph.D. professionals; the other half received caring attention from non-psychologists, college professors who had been identified by their peers as kind and good listeners.
What did Strupp find? People improved considerably in both groups, but there was no difference in efficacy between the professors and the professional psychologists. 11 Feeling a bit like the emperor with no clothes, the clinical psychology establishment has replicated the study in slightly different forms more than 30 times, in an attempt to show that trained professionals are, on average, better at therapy than untrained kind paraprofessionals. The results have been surprisingly consistent—common professional training in mental health does not appear to make people more effective healers. 12
In a related line of research, over the course of a large number of trials, it has been shown that one type of therapy (Freudian, for instance) does not outperform another form (say, cognitive behavioral). 13 If training and therapeutic modality do not appear to affect effective support, you might ask, what does?
Research has routinely shown that certain people are better at giving support than others, and that quality of caring attention matters. Indeed, one multi-million dollar study by the National Institute of Mental Health found that some psychiatrists are consistently more effective healers than their peers even when just prescribing inert cornstarch placebos. 14
What does this all mean for the communities movement? I believe findings like these have the
capacity to embolden us. We do not necessarily need to rely on expensive, HMO-based, rigid
therapies and drugs administered by professionals who might not share our culture or values. We
can provide amateur care for one another, reclaiming the positive connotations for “amateur”—
from the French amateur, “lover of,” ultimately from the Latin verb amare, to love. Better to
base our care for one another in love is the message I get both from my personal
intuitions and from my reading of the primary research.
Principles for Community-Based Mental Health
Freud once commented that the aim of psychotherapy was to help people ascend “from hysterical misery to ordinary unhappiness.” I think we in the communities movement can strive for more. To that end, and with a nod to the famous poster on how to build community, I offer the following in closing:
How to Support Community Mental Health
- Support (neuro)diversity, recognizing and honoring the huge variance in the human experience.
- Promote economic equality and opportunity. 15
- Seek natural health, making sure to get plenty of B vitamins, omega three fats, and vitamin D. 16
- Spend time outside. 17
- Exercise with vigor. 18
- Avoid toxins like heavy metals. 19
- Devote a great deal of time to family and friends, and nurturing and enjoying those relationships.
- Express gratitude, listen, and practice forgiveness.
- Continuously seek to be helpful in daily life.
- Connect with and care for nature.
- Eat together.
- Practice optimism when imagining the future.
- Savor life’s pleasure, and try to live in the present moment.
- Commit to lifelong goals and ambitions.
- Live in connection with your values. 20
1. For supporting studies see “The Myth of the Reliability of DSM” by Stuart A, Kirk and Herb Kutchins.
2. See http://www.tufts.edu/~skrimsky/PDF/DSM%20COI.PDF. “One hundred percent of the members of the panel on ‘Mood Disorders’ and ‘Schizophrenia and Other Psychotic Disorders.’”
3. See e.g. Robert Whitaker’s excellent Mad in America.
4. The statistical measure in question is Cohen’s Kappa (κ). A good summary of the evidence for low agreement between independent mental health professionals can be found in the work of Richard Bentall. See for instance his book Madness Explained: Psychosis and Human Nature. For an academic synopsis click here.
5. See Marshal Rosenberg’s book Nonviolent Communication and CNVC.org.
6. See journalist Gary Greenberg’s “Is it Prozac? Or placebo?” in Mother Jones.
7. In a recent meta-analysis, Moncrieff and Kirsch conclude, “recent meta-analyses show selective serotonin reuptake inhibitors have no clinically meaningful advantage over placebo” and “methodological artifacts may account for the small degree of superiority shown over placebo.”
8. See “The Sham ECT Literature: Implications for Consent to ECT” by Colin Ross.
9. See www.depressiontreatmentworks.org/ssriwithdrawal.html for a summary.
10. See e.g. the Wikipedia page on the Soteria movement for examples.
11. See Jonathan Engel’s book American Therapy for a review.
12. See Berman’s “Does professional training make a therapist more effective?”
13. See Bruce Wampold’s The Great Psychotherapy Debate.
14. See Wampold’s article “Psychiatrist effects in the psychopharmacological treatment of depression.”
15. See Richard G. Wilkinson and Kate Pickett’s 2009 The Spirit Level: Why More Equal Societies Almost Always Do Better.
16. Read and experiment to determine the specifics that work for you. Dr. Mark Hyman’s book Ultramind is a good place to start.
17. See for instance this study showing as little as five minutes in nature can boost mental health.
18. See fitness.gov/mentalhealth.htm for a summary.
19. See for instance this study showing a correlation between mercury fillings and depression, or this one, correlating lead levels and and antisocial behavior.
20. For a review of the positive psychology literature, which focuses on human strengths and virtues see Sonja Lyubomirsky’s The How of Happiness or, more technically, The Positive Psychology Handbook.