Will Hall will be a contributing editor now here on Beyond Meds. He has written other articles for the blog in the past as well.
Here Will describes the concept of harm reduction. I was drawn to harm reduction models and agencies that practiced such while still a social worker in San Francisco. I only worked for places where such philosophies were in place the last 4 years I was in the Bay Area. This was prior to my own decision to come off meds. I always have been pro-choice and supported my clients in what they wanted. The harm reduction philosophy, in many ways, is what real self-determination is about.
Coming off medications: A harm reduction approach
In 1993 I put locked wards and treatment facilities behind me, and had nowhere to turn. After a year-long stay in the public mental health system, I was left with a diagnosis of schizoaffective disorder schizophrenia but was no better than when I first went for help. Like too many people suffering severe emotional distress, the treatments offered, which included restraints and seclusion, had been traumatizing, not healing.
I was prescribed many different psychiatric drugs during my treatment, but they only made things worse. Prozac helped me for a while, getting me up in the morning and covering my depression with productivity, but then the little green and white pills made me manic and suicidal. I was sick for days after coming off Zoloft, with counselors telling me I was faking it and punishing me for missing group therapy. Nurses who drew blood samples for my lithium levels never explained it was to check for drug toxicity, and I thought that the Navane and other anti-psychotics I took to calm my wild mental states were necessary because of my faulty brain.
The medical professionals who prescribed my medications never made me feel empowered or informed. They didn’t explain how the drugs work, honestly discuss the risks involved, offer alternatives, or help me withdraw when I wanted to stop taking them. Information I needed was missing, incomplete, or inaccurate. When I finally began to learn ways to get better without medication, it wasn’t because of the mental heath system, it was in spite of it. Today I have been medication-free for more than 14 years.
My dissatisfaction with mental health care sparked years of searching for alternatives. In 2001 I co-founded Freedom Center, a peer-run support and activism community. From just one meeting a month and a free email account, Freedom Center quickly grew to become a city-funded volunteer organization that offers a number of different services. Freedom Center has support groups, an acupuncture clinic, advocacy help, writing workshops, and yoga classes. We’ve gained wide recognition for our work, including words of support from the Mayor and a recent profile by Forbes Magazine. We’re a living example of a new way of helping people in need, and we actively call for changes in public policy and traditional care.
Many people in the Freedom Center take medications, many do not, but we all share the need for honest discussion about medication issues and the availability of options and choices, including holistic alternatives. Over the years my Freedom Center colleagues and I have provided counseling to hundreds of people facing difficult medication decisions. Again and again people come to us for help because their medications were not working and they wanted options, but their doctors or therapists were not helpful. We learned that even in liberal Massachusetts, the basic principle of informed consent and education about your treatments is routinely ignored in mental health care. Too often people are left with little real information and few options or choices.
Out of this need we developed a “harm reduction” approach, and recently published the Harm Reduction Guide to Coming Off Psychiatric Drugs. The 40-page illustrated guide is the information I wish I had had when I was given psychiatric drugs. We’ve made the guide available free on the internet.
“Harm reduction” is an international movement in community health education that recognizes there is no single solution to every problem. Abstinence is not necessarily the only way. Applied to sexuality and recreational drug use, instead of pressuring to quit, harm reduction accepts people “where they are at,” and educates them to make informed choices and calculated trade-offs that reduce risk and increase health. People need information, options, resources and support so they can move towards healthier living – at their own pace and on their own terms.
Applying harm reduction philosophy to mental health is a new but growing concept. It means recognizing that people are already taking psychiatric drugs, and already trying to come off them. It encourages examining all the different kinds of risks involved: the potential harm from emotional crisis and psychosis (including losing a job or going to jail), as well as the potential harm from treatments to deal with these experiences, such as psychiatric drugs, diagnostic labels, and hospitalization. Above all it is not either or: it supports continuing to take medication or reducing and going off, depending on the needs of the individual.
Making harm reduction decisions means looking carefully at the risks of all sides of the equation: honesty about what help drugs might offer for a life that feels out of control, honesty about how harmful those same drugs might be, and honesty about options and alternatives. Any decisions may involve a process of experimentation and learning, including learning from your own mistakes. Harm reduction accepts all this, believing that the essence of any healthy life is the capacity to be empowered. Many professionals — including the several forward-thinking psychiatrists and nurses who helped write the Harm Reduction Guide to Coming Off Psychiatric Drugs — are embracing this view.
Key to this approach is understanding that people are already coming off medications. Since professionals and service providers often view medications as essential, many have turned the reality of discontinuation into a “non-compliance” issue and kept the whole subject under a kind of treatment taboo. Patients read scandal after scandal in the media about pharmaceutical company deceit and the dangers of psychiatric drugs, but professionals offering discussion of alternatives and help coming off medications remain a small, but growing, minority. As a result of this taboo and lack of support, many people get into problems with drug withdrawal, such as going too fast, or assuming that withdrawal symptoms, which can mimic the psychosis the drugs were prescribed to treat, mean they have to go back on the drug. When people go into crisis it is also seen as failure, rather than part of a learning process. Few doctors teach patients non-drug ways of improving sleep, reducing stress, managing anxiety, and coping with symptoms.
The goal of the Harm Reduction Guide is to help people make empowered decisions; consistent with the harm reduction approach, it is not ‘anti-medication’ or ‘pro-medication,’ but pro-informed consent and pro-choice. Drug risks and harm are real and under-recognized, but the help that drugs can offer many people is also real. Balancing these complex factors was the challenge of writing the Guide.
Some of the best research is coming out of the UK and Europe, in part because the influence of pharmaceutical companies on health policy is weaker there than in the US. Research in the UK shows that many people who decide to come off medications, whether it is anti-depressants, anti-psychotics, or other drugs, do so successfully. In 2005 the leading UK charity MIND released “Coping with coming off,” a detailed survey of patient experiences, successes, and obstacles with medication withdrawal. MIND”s study on coming off found that patient initiative, even without doctor support, can often lead to better outcomes when doctors are resistant to or unfamiliar with coming off. Based on this research, MIND reversed its earlier recommendation to only attempt coming off medications with doctor approval.
Long-term recovery rates are often higher for people who do not take medications, because medications sometimes pose a risk of worsened psychosis and chronic illness. Other international studies, as well as ignored research from the US, are cited in the Harm Reduction Guide and available at the Freedom Center website. Many people stuck in the mental health system today are there because of their medications. Offering them the information, opportunity, and support to explore coming off medications is an urgent medical necessity.
Despite the growing recognition that medications are not the panacea they are marketed to be, and despite the rising interest in holistic health, nutrition, therapy, and non-pharmaceutical approaches to emotional distress and extreme states of consciousness, little detailed clinical research exists on how to best help people withdraw. The Harm Reduction Guide to Coming off Psychiatric Medications drew from years of direct experience with coming off meds, and the editorial advice of 14 health care practitioners: 6 MD’s, 4 RN’s, several psychologists, and two acupuncturists familiar with the coming off process. It also has an extensive Resources section for further reading.
This Harm Reduction Guide brings together the best information we’ve come across and the most important lessons we’ve learned at the Freedom Center. The ideas and principles in the Guide help me live medication-free with a diagnosis of schizophrenia, and its principles and approach are helping many others either come off medications or find a greater sense of empowerment and control in their medication decisions.
*Will Hall is the co-founder of Freedom Center and a member of The Icarus Project collective. He is a counselor in private practice and has served as a consultant internationally.