There are many reasons to question the extensive use of psychiatric medications in the United States. The youth bipolar epidemic, which has expanded 40 fold in the last twenty years, is purely an American phenomenon. There are concerns about the pharmaceutical industry’s use of marketing to create illness where none existed by expanding markets illegally and persuading doctors to prescribe drugs off-label for uses that don’t have research evidence for efficacy. There are questions about whether psychiatric medications might actually worsen the long term outcomes of people with psychiatric labels. The are questions about permanent brain changes that happen after long term medication use.
There is evidence that the “chemical brain imbalance” theory of mental illness isn’t even accurate scientifically. The National Association of State Mental Health Program Director’s study that showed that we have a 25 year lower life expectancy directly indicated that metabolic imbalances causes by the psychiatric medications may be to blame. People are rapidly being re-institutionalized into jails and hospitals that are much more expensive to operate, but provide strong kickbacks to people who can hire lobbyists. Missouri even has a bill proposed right now that could put people in jail for 120 days just because a judge suspects that they might have a mental illness. Right now in the United States about 99% of mental health funding goes towards services that keep us dependent, and only 1% of the funding is going towards services that promote recovery and wellness. Some people have even proposed that this 1% may be a payoff to keep the passionate mental health activists busy so that we don’t look into the bigger picture.
This is such a huge, overwhelming, and evil puzzle that it can freeze us. There is a scientific process called narcotization, where things become so difficult to tackle that we give up. One study on gingivitis (gum disease) showed that when people were shown pictures of stage 4 gingivitis, where people had gross discolored mouths and were losing teeth, that people thought that it was hopeless and stopped brushing and flossing their teeth. However, when people were shown pictures of stage 1 gingivitis, they increased their brushing and flossing.
So what can we do to tackle this huge injustice in our society?
1. Work for sunshine laws and transparency for all government functions. Contributions to campaigns need to be public knowledge. The ability of corporations to contribute to campaigns wouldn’t be nearly so tough to handle if we just knew who was doing what. Then the actual free market could serve as feedback when large donations were made to unsavory causes. We also need to know who our elected officials are talking to, who is going in and out of their offices, taking them out to dinner, and promising them lucrative jobs after their term limits. Although term limits do get fresh people into office, sometimes people who know that their political careers are not going to be long term are more willing to accept deals that might look bad in the long term.
Contact your elected officials early and often. Phone and handwritten snail mail letters are often the most effective. Emails should be addressed to only a few people at a time to get past spam filters. Try to contact them with specific bill numbers. Long term relationships are much more effective than grassroots mass field trips to the capitol.
2. Know that very few people understand how much evil is being done. Almost all psychiatrists are trying to help people, but many of them don’t have the time to stay current with medical literature. Very few people actually read the journal articles and dig deep into references and sources. Even so, more and more psychiatrists are starting to speak out about these issues. Allen Frances, the lead author of psychiatry’s diagnosis bible, the DSM – IV is vocally opposing the updates to the book. He points out that we do not need to expand the diagnostic categories to include more and more people.
When Robert Whitaker came to Anaheim, California, to talk about his book showing that medications may worsen long-term outcomes, he told stories about the psychiatrists that have been some of his most emotional audiences. “They come up to me after my talks and say, ‘I don’t know what to do. I’ve been doing things this way my whole life and it’s horrible to think that I may have been harming people.’ ” Whitaker said that the psychiatrists who truly hear his message are very deeply affected by it and strongly want to learn how to do things differently.
People also get very defensive when they hear the message for the first time. I initially confused medication critics as being against all medication use, and I was sure at the time that my medications had helped me. It took me a long time to realize that the position that most advocates take is more complex, something like, “Although medications help many people, other people are not well served by long term usage of medications.”
I was also confused with individual outcomes and aggregate outcomes. Just because something works or doesn’t work for me as an individual doesn’t say anything about what will happen to my group as a whole. There is a statistical connection, but very few outcomes have 100% statistics. I at first thought that Robert Whitaker’s long term outcome research was one sided. He had a great comeback to this, saying, “If I could find any consistent body of research showing that medications did improve aggregate long term outcomes, I would show it.”
3. We are all trying to make a living. Even people that work at pharmaceutical companies (and I was one for five years) think that their drugs are highly and extensively tested for safety and efficacy. Most medicinal chemists, the people who design medications, are deeply motivated by the desire to create medicines that help people. One pharma ad that I loved when I was a pharmaceutical chemist showed a cancer drug and the Ph.D. voice-over saying, “I am motivated by the 20,000 people that my drug has helped.” Then it showed a little girl’s funeral and the voice-over said, “And the one that I didn’t.”
Even pharmaceutical sales reps think that they are helping doctors to learn about new products that can make a difference for their patients. One former pharmaceutical sales rep who resigned after learning about wrongdoing by his employer, said, “We are the last to know when a drug is harmful. Of course they never tells the sales teams that there are any concerns about the product.” Everyone has a story in their head about being on the right side of things.
4. Be compassionate towards people who have different recovery stories than you. Many mental health activists are extremely strong opponents of forced medication. This is a process called involuntary outpatient commitment where a person can be forced to take medication under threat of hospital or jail. Sometimes this even includes a nurse coming to your house every day to watch you take your pill, or injectable medications that last a whole month at a time. People can even have involuntary outpatient shock treatments, where they are doing well enough to live in the community but are forced to get “maintenance” shock treatments to induce highly controversial and potentially very damaging seizures. People who are against forced treatment says that it increases stigma because people won’t seek services when they might be forced to stick with ones that they don’t like. Also the trauma of becoming powerless and being forced to do anything against one’s will can be quite long-lasting and harmful.
Yet there are also people like Fred Frese who say that forced treatment was a key element in his recovery story. There are other people out there that say shock treatments saved their life and was incredibly beneficial. This doesn’t negate the people who say shock treatments permanently ruined their short term memory, erased cognitive abilities, and caused them to forget important skills. Almost no one is ever warned about the relatively common potential for this irrevocable damage . Yet, If my recovery story has validity, and I am the evidence, then someone who was able to recover with another kind of help has an equally valid recovery story. My friend Ken Braiterman points out that I never would have met him if it wasn’t for medications. All scientific research has journal articles that can be taken out of context to support either sides of an issue, just as Bible versus can be lifted without meaning to support almost any kind of decision. The important thing is to try to look at the entire picture before moving forward. This is very hard to do when you personally know someone being damaged by the opposite point of view.
5. Be careful how you talk about this information. Kansas has a very strong mental health advocacy community and one of the most beneficial programs is called Consumers as Providers, where people in recovery attend college and internships to learn how to get jobs as peer support providers. The class is a very empowering process. One of the instructors who was on my Board of Directors for six months, told me about a time that her whole highly motivated, creative class all of a sudden became depressed and unable to work. She started asking them what had happened and found out that they got very discouraged when they had heard that some psychiatric medications cause brain damage. She cautioned me to be extremely careful about who I tell. She said to say it like this, “There may be very important long term effects of medications that we don’t even know yet.”
Telling a smoker that cigarettes cause cancer doesn’t do a single thing to change their behaviour, either. I used to tell hundreds of people all the time that they should ride their bikes to work, and it’s only ever worked for two people. Behavior change are knowledge are rarely linked. That’s why I use spoken word poetry in my performances, because sometimes I can move my impact past the brain right into the heart.
6. Know how much work and discipline it take to live well with a chronic illness. The comparison between mental illness and diabetes as a chemical imbalance that must be treated with medications is not founded scientifically. However the comparison is correct in that diabetes as well as lupus, arthritis, ulcers, heart disease, and asthma all need to be treated with lifestyle changes. It’s important to find a effective way to manage stress, whether this is exercise, art, spirituality, mindfulness, activism, volunteering, herbal medicine, gardening, singing, or whatever. One person once described recovery as “exquisite knowledge of stress levels and how to moderate stress.” I know that I need three meals a day with a good amount of protein in them, around eight hours of sleep most nights, avoidance of caffeine and pot, working less than 50 hours a week, and one hour of exercise every day. I also need a few hours or days of discussion and mindfulness exercises when my trauma issues have been triggered. It took a long time for me to figure all this out, and a lot of discipline to keep it up. Whenever I get too far off the list, and I still do all the time, I start to have symptoms. If I am disciplined about the list, I can do everything I want to do and live a great life.
Very few people with mental illness or any other chronic disease have figured out the list for themselves and then have the self-discipline to stick with it. I don’t even have this much self-discipline all the time, and I’m an Olympic athlete with no physical complications at all. It also takes a lot of work on the part of social services agencies to help people to figure out what they need to do for themselves. Medications are often used by diagnosed people as well as by the social service agencies who help them to try to shortcut this immense self-care effort needed. If someone tells you that their medications work, it may be entirely true.
7. Don’t underestimate the power of scientific authority. Not everyone knows science well enough to dig into research on their own. Instead, we have to trust scientific proxies like journalists and doctors. Yet these people may not have to time to look into all the research either. The story takes quite a long time to figure out. Last fall when I was triggered very badly in my trauma issues, I called the doctor the next day to see if he could help me out. Even though I knew I just had to wait and ride out the problem, I still wanted someone to fix me. I felt bad enough to ask for help from anywhere I could get it. This is the same doctor who tries to scare me with horror stories every time I disagree with him. “But you were so sick one time….” Every time I have an appointment with him I dread it and have a hard time sleeping the next before. Even though I have a masters degree in pharmaceutical chemistry and understand how medications work, I still very deeply want my doctor to trust me and believe in me and agree with me. Not everyone is aware of self-advocacy skills to help them prepare for a doctor’s appointment.
8. Learn the basics of safe medication discontinuance. Read the Icarus project’s Harm Reduction Guide to coming off psychiatric drugs. It is extremely dangerous to quit psychiatric medications cold turkey. Almost all of them have powerful withdrawal effects or discontinuations syndromes. Abrupt withdrawal of some psych meds can even cause seizures and death. The most famous reaction is the pins and needles and electrical feelings and deep sense of malaise that come when people try to quit taking Effexor. Most meds greatly increase emotional anguish when people try to stop taking them, and this is one reason that 8 of the top 10 legal drugs linked to violence are psych meds. Not too many of us were violent before treatment, but medications that greatly increase agitation are hard to handle for anyone. I’m not giving medical advice on this blog, but just trying to increase compassion for people undergoing this immense effort. It’s important to decrease medications extremely slowly, like 10% per month. One of my board members describing the file technique. “Take a nail file and file one pass the first night, two passes the second night, three passes the third night, until the pill is gone.” It can take months or years to get completely off meds. I started in 2004 on six meds and I’m still not done yet. I haven’t been in a hurry, though.
It’s also important to only change one medication at a time and to work with people who know something about the process. This might be your doctor, but it might not. In fact, a study by Mind, UK found that doctors were unhelpful more often than they were helpful in this process. Most studies of medication effectiveness are done when people are suddenly yanked off all their meds, then one group is placed on placebo and one group is placed on the study medication. Of course study medications seem more effective that someone suffering acute withdrawal. Studies show that when people gradually get off their medications, the risk of relapse is one third the rate of a sudden withdrawal. It is very important not to be so belligerent and critical of medications that someone misinterprets your point of view and decides to suddenly quit taking all of their medications. This is why some medication critiques are actually a little irresponsible in how they approach the issue.
9. Read more: My links on the left hand side of my website now has a “Psych Med Critics” section. Click on any of their links and follow their blogs.
10. Follow us on Twitter. I’ve composed a “Pych Med Honesty People” list on Twitter than you can find here: http://twitter.com/#!/list/CorinnaWest/psych-med-honesty-people-6
Go to that list and follow any of us to get our updates on what we are doing to fix this problem. If you are new to Twitter, it’s extremely easy to use and a great source of new articles, research, surprises, and passions. Most of us will tell you this way when we update our blogs. Twitter is a very useful tool for learning more, networking, and staying current. This is where I heard about many of the articles I am sharing with you now.
11. Go to a conference:
- June 10 – 12, 2011. Boston, MA. Creating Connections through Dialogue. Hosted by the National Empowerment Center. “A Weekend to Learn Together, Deepen Connections, and Expand Our Vision of a Healthy World.” Lots of discussions about medication usage and what we can do about it.
- June 20 – 21, 2011 New York, NY, Psych Out – A conference for organizing resistance to psychiatry. Self-funded advocates. This is often organized at the same time as the American Psychiatric Association conference and there are some protests of that conference.
- June 21 – 23. Wichita, KS. The Kansas Recovery Conference. Hosted by Kansas’ Consumer Advisory Council, Kansas’ statewide mental health consumer network. The organization currently has a grant to work on trauma-informed care, the idea that people’s main problem might be past overwhelming experiences. This is a very big, fun, hope-filled conference. For several years it held the record as the biggest ever mental health consumer conference in the nation.
- September 7 – 10, 2011 Philadelphia, PA. National Association of Rights Protection and Advocacy (NARPA) conference. Turning crisis into opportunity
- August 21 – 23, Lake of the Ozarks, MO. Real Choices Real Voice. Missouri’s mental health consumer conference.
- October 28 – 29th, 2011, Los Angeles, CA. International Society for Ethical Psychology and Psychiatry (ISEPP) Alternatives to Biological Psychiatry: If We Don’t Medicate, What Do We Do?
- October 26 – 30, 2011, Orlando, FL. Alternatives, the National mental health consumer conference. View medication as one resource among many; this conference presents some of the many other options. This year’s theme is “Coming Home: Creating Our Own Communities of Wellness and Recovery.” The theme was selected by the Alternatives 2011 Advisory Committee to reflect the yearning for home by military veterans, individuals with involvement in the criminal justice system, and those who are homeless.
12. Donate. In response to Robert Whitaker’s Anatomy of an Epidemic, a group of people formed a non-profit called The Foundation for Excellence in Mental Health Care. While its still, working on non-profit status, you can make donations through the Berkshire Taconic Community Fund. This group sponsored a “medication optimization” symposium in early February in Portland, Oregon. Psychiatrists, providers of mental health services, and peers from more than a dozen states attended the symposium, which sought to identify protocols for more selective, cautious use of psychiatric medications.
Mind Freedom and Psych Rights both take donations on their websites. These are independent mental health advocacy organizations and work free of government funding in order to make sure that they can represent people without a conflict of interests.
I’ve also got a donation button on the right hand side of my website and I would love your help.
13. Volunteer. Quite a few communities have a peer support center or advocacy group. Although some national level advocacy groups like NAMI and Mental Health America are highly pro-medication, their individual chapters vary widely in how much they value recovery and consumer input. Each chapter has to be judged individually, and you might find great local affiliates close to you. Start a support group, or attend one. Give time to help your local peer support centers. Often these are some of the few places in the mental health communities that share the whole picture of medication impacts. They are almost all working on a shoestring budget and could use volunteers to help, especially with skills like marketing, website design, bookkeeping, construction and building maintenance, public relations, fundraising, and special event planning. Many communities also have warm lines, call in support lines which may allow you to volunteer from your home. You can volunteer online from home through organizations like Sparked.com which coordinate creative efforts for nonprofits who need help. Give just an hour a week if you want, and then you’ll be hooked by the courage and creativity and challenges overcome by those of us living successfully with psychiatric labels.