One woman’s inspiring journey through BC’s mental health system maze
by Alan Cassels
When you spend as much time as I do reading medical literature, parsing studies and thinking about their statistically significant ‘findings,’ you get a certain view of medicine. Research is not created equal and there is a strict hierarchy of evidence where randomized trials are considered superior forms of evidence in evaluating treatments. Better yet are those meta-analyses; the combined summaries and syntheses of many randomized controlled trials (RCTs) are considered the gold standard in determining if there is ‘proof’ of a treatment’s benefits. At the other end of the spectrum are ‘case studies’ that may be just the observations of one or several patients. Then there are personal stories which tend to be ignored, dismissed as ‘anecdotal’ and said to be of limited usefulness.
While I am all for good-quality meta-analyses, I also think we have a lot to learn by reading case studies and personal stories. They are really important and can be very illuminating, often revealing, in excruciating detail, how our health system works in the real world to help sort out peoples’ health problems.
Over the last 20 years or so, I have been contacted by hundreds of people, all with a story to tell, often with an altruistic motive which says, “I don’t want others to suffer the way I have.” Among those who have called me, those taking statins often ask if their muscle weakness could be due to those cholesterol-lowering drugs. “Likely,” I say. Others wonder if their mother’s anti-alzheimer’s pill could be causing her to feel nauseous. “Probably, yes.” Others question the prescription for an amphetamine for their 10-year-old boy who can’t sit still (sheesh). These people all have stories to tell and they are rich and rewarding.
What many of these people have in common is that they have been harmed by the treatment they’ve been prescribed. But what isn’t common are those who have gone through terrible medical experiences yet can move beyond the trauma to meaningfully communicate it to others.
Over the last 30 years or so, Daisy Anderson has seen 18 different psychiatrists, been prescribed more than 30 different medications, was given electric shock treatments, been hospitalized repeatedly and faced the stings of rejection and isolation. With an admittedly difficult childhood, marred by various types of abuse, she documents her slow journey through BC’s mental health system in incredible detail. Her story, just published in the book, The Daisy Project: Escaping Psychiatry and Rediscovering Love, speaks to those who find themselves navigating what passes for mental health care in BC.
I asked her why she wrote such a book, painfully recalling and documenting her struggles in what seemed like an incredibly uncaring, hostile system. Her answer was simple: she wanted to tell the world when she got better. She didn’t like the way she was being treated and she wanted her life back.
The problem, of course, is being diagnosed with a mental illness and trying to get well when it seems everything – including your family, the medical system and even the lawyers – might be working against you. It means negotiating for yourself and being your own advocate. As Daisy writes, “Disability was about letters, forms and proving that I was extremely ill. It also meant having to ask a hotheaded psychiatrist to write a letter and sign his name.”
Thankfully, she did find people along the way, particularly a psychologist, and others who were able to help her. As she writes, “I sought solace from anyone who would listen.” A switch happened when she admitted to her very helpful psychologist that “psychiatry may have harmed me.” For her, “it felt like a turning point, a sign of my transformation from an indoctrinated psychiatric patient into a strong independent woman.”
Many of the people who end up in the mental health system are there not because they have a ‘brain disease,’ but because they may have ended up with a diagnosis of ‘anxiety’ or ‘depression,’ which started them down a cascade of anti-anxiety drugs or antidepressants. Daisy’s life might be a testament to what happens to adults who have been through childhood abuse, yet it was the abuse by the mental health system that really slowed her recovery. But Daisy survived the dismissive psychiatrists and their armamentarium of toxic drugs and thrived in spite of them, refusing to accept the view that others had of her. Thankfully, she found a psychologist who “really listened,” helping immensely. Unfortunately, psychological help can be very expensive and not readily available for people on limited means. As to the ‘secret’ of her survival, she told me, “I just had to tell my story.” Being a natural documentarian where her diary was her “release,” her pages and pages of records and copious notes all helped her advocate for herself based on the facts of her own case.
As for getting off drugs, she comments on the system I know about, in which people take prescriptions with very limited ‘informed’ consent. As for all the drugs, she told me, “You need to know a lot and you need to be given time to think about it. You need to be given alternatives and you need to know the problems you will face on the drugs.” For example, you can develop diabetes with the newer antipsychotics, but nobody is typically informed of this or really understands what the full ramifications are of getting a ‘new’ disease. The drugs, she says, are “complicating things immeasurably because the doctors don’t see the side effects or underestimate their effects on one’s day to day living.”
Most people might not know that stopping many psychiatric drugs involves a “withdrawal effect,” which can make them terribly ill. Unfortunately, tapering patients is not a speciality of most doctors and, for Daisy, stopping her benzodiazepines (drugs prescribed for anxiety or sleeping) was difficult. Along the way, she had to research the best ways to do so (discovering the Ashton Protocol) and take information to her doctors so they could reduce her drugs slowly and safely.
Above all, Daisy’s “project” is a plea for people to be “listened to.” She shows that to improve the care of people with mental health difficulties, the system needs to be adaptive. “Not everyone will benefit from counselling, medication or cognitive behavioural therapy,” she says, but people should be offered these options. “There has to be far fewer medications” and most importantly, she says, people with mental health problems need “someone who can listen and understand.” What also helped her return to health was many of those other things that generally increase our enjoyment in life: yoga, walking, being in nature, belonging to art and craft groups and spiritual practice. “Basically, being in a community of people who accept you as you are.”
I asked Daisy what is causing the growing sense of mental ill health in society and she responded immediately, “Lots of people go through tough times. But when you lose your husband, etc, you may need support, but you don’t need medication.” She adds, “Sometimes, we get blamed for being sick when, in fact, society is doing it to us.” For her, the solutions are complex, but she emphasizes going to the root: “The first thing we need to do is care for our children… but don’t blame parents.”
The new NDP government created a new Ministry of Mental Health and Addictions to deal with the issues. According to the Ministry, “One in five British Columbians will be affected by a mental health and/or substance use problem this year.” Minister Judy Darcy received a ‘mandate’ letter from the new premier which stated that her job, in part, was to ”guide the transformation of BC’s mental-health-care system” and to “focus on improving access, investing in early prevention and youth mental health.”
I’m hoping Judy Darcy will have people like Daisy Anderson advising her.
September 14, 7PM: Vancouver book launch of The Daisy Project: Escaping Psychiatry and Rediscovering Love. At the Unitarian Church of Vancouver, 949 West 49th Ave. All are welcome. Free.
Alan Cassels writes about pharmaceutical policy in Victoria and is the author of Seeking Sickness: Medical Screening and the Misguided Hunt for Disease. www.alancassels.com