Part One: Becoming Psychiatric: Easy as 1-2-3
Living with a mental illness is hard work. I know because I lived as a psychiatric patient for over thirty-seven years. Working to become well turned out to be even harder. I know because it took everything I had to recover. Even though eighteen psychiatrists treated me, my health only got worse. I recovered completely after hiring a private psychologist. Now, I take no psychiatric drugs and see no psychiatrists.
My almost-completed book, which I call The Daisy Project, tells the story of how I first became a patient in my home province of British Columbia, Canada, why I was sick for so long, and the hurdles I went through to fully recover. This blog provides a brief overview of my journey.
My problems began after my own mother sexually abused me when I was very young. I grew into an emotionally immature, awkward fifteen-year-old and spent hours crying in the privacy of my bedroom. Seven years later and in my last year of university, I made what I believed to be a responsible decision: to seek help from a psychiatrist.
Everything about me was wrong. What I said, what I did not say, what I did and what I did not do. I felt so badly that I wanted to die. When the psychiatrist asked what brought me to his office, I could not utter one word when I really wanted to tell him how awful I felt. It took a few sessions before I could tell the specialist about the sabers that I imagined were darting from the skies directly toward me. The psychiatrist prescribed Stelazine, a newly approved antipsychotic drug. I started to sleep better. As I would soon graduate in the class of 1965 from the UBC School of Nursing, I found a job and place to live. The psychiatrist approved and sent me forth to work in my new position as a pediatric nurse. I was a scared twenty-three-year-old almost certain of trouble ahead.
As predicted, work was a disaster. I cried in the toilet stall during meal breaks. The psychiatrist added an antidepressant. I dozed off during coffee breaks. The psychiatrist added a stimulant. My hands shook when I prepared injections. The psychiatrist added anti-side-effect medication. I could not think clearly. The psychiatrist increased the dose of the antipsychotic. My flattened emotions masked my hurt when other nurses shunned me, a supervisor taunted me and another made a sexual pass at me. My anxiety increased; my despair grew; my emotional pain deepened. I quit the job.
As sick as I was, I wanted to make a difference in the lives of people like me. I went to work in the provincial psychiatric institution. I listened to the stories of patients. I observed the behaviour of psychiatrists. I questioned the rules and regulations of administrators. I was an undercover agent spying on the deepest secrets of the institution and witnessing the pain of those living within its chilling atmosphere. At the same time, I was often lost in my own world and I wanted to kill myself.
To avoid ending up institutionalized myself, I did everything I could to get better.
I stopped seeing a psychiatrist who was angrier than I was. My family doctor sent me to another. I stopped seeing him too, as he was far too familiar. When I asked my family doctor for a third referral she told me the doctors were good doctors and she refused to send me to a third. I protested with a sit-in. I left her consultation room and sat in the reception area, prepared to sit for as long as I needed to get a referral. An hour later, the doctor wrote the referral. As well as seeing psychiatrists, I attended mental health support programs. When an administrator cancelled a program that was actually helping me, I protested to senior officials.
Twenty-five years of psychiatry had not helped. I learned why when I asked my thirteenth psychiatrist what he could do for me. He told me that he would not commit to success; that way, he said, he would have no failures. Why, then, had he and other psychiatrists prescribed me high doses of twenty different psychiatric medications, sometimes five or six different drugs a day, if they could not commit to success?
The psychiatrists had a duty of care, especially when it came to the side-effects of the drugs. My body ached and the only relief was to pace hallways or walk for miles. My speech was slurred, my lips quivered and sometimes I choked on my food. I walked with a shuffle and I had a blank look on my face. I had spells of blindness and I could not drive. What people said did not make sense. I was always forgetting things too.
So what did the psychiatrists do? They fiddled with the dosages or changed the drug and told me to get back to work.
The term “side-effects” downplayed the serious damage that extended into my family. They talked about me behind my back and my husband was ready to walk out. My health deteriorated and the psychiatrist gave me electric shock treatments. I ended up living on a disability pension. If my psychiatrists were practicing evidence-based care, they were not paying attention because there was no evidence that I was getting better.
Whatever happened was obviously my responsibility and I had to take up the challenge. In 1990 I wrote in my diary, “I have been told I am gutsy, some say powerful. To me this is a compliment, but I am shaking in my boots.” I continued with my gutsy pushing of the doctors, and they continued not knowing how to help. Finally, in 1995, I asked my sixteenth psychiatrist what he thought of my going to a psychologist. He told me not to open a can of worms. As soon as I got home, I made an appointment with a registered psychologist. The psychologist knew exactly what to do. He was consistently respectful and listened carefully. He adjusted the therapy according to how I was doing and he never gave up. I started to talk, to make friends and to stand up for myself more than anyone had ever thought possible. However, my anxiety continued. By this time, I had come a long way on my journey to wellness and I would not let go of my dream for a full recovery.
I had an impressively difficult job ahead if I was to succeed. In the mid to late 1990s the pharmaceutical industry was funding organizations to advocate for access to newer and more powerful drugs. At the same time, mainstream physicians were questioning whether psychiatry belonged in the medical profession. Psychiatrists did not use X-rays and blood tests to diagnose mental disease, rather they talked with patients. Psychiatrists also faced tough competition from psychologists and counsellors and to appease the medical profession and to be distinct from their competition, psychiatrists began relying heavily on medications. Added to the corporate and professional pressures of the time, my psychiatrists seemed to lack in-depth knowledge about the drugs and when I questioned them, they tended to avoid responsibility for their prescribing practices. I wondered if I would ever overcome the barriers and recover, or just continue getting sicker.
Part Two: Tough to Overcome
My body revved in high gear, non-stop, 24-7. My private psychologist knew exactly what to do. He handed me a computer print-out that pointed to my two prescribed benzodiazepines, also called benzos, as the cause of my agitation. After reading the papers, I realized that the six psychiatrists who had prescribed the addictive medications did not recognize that my mental and physical problems were serious reactions to the benzos.
A month earlier, I had stopped my tryptophan, a sleeping sedative; buspirone, an antianxiety drug; and bupropion, an antidepressant. However, when I had tried to stop my benzodiazepines, Ativan and Rivotril, the withdrawal was too much and I went back on them. Yet, I really wanted off everything so I talked to addiction services. They could not help. I called the women listed on the computer print-outs. One told me to go slowly and another said to lower my expectations. A third, who had studied the medical literature on benzodiazepines, offered ongoing telephone support during the withdrawal period. All three women told me how hard it was to find a doctor who knew how to taper people off the drugs safely and effectively.
Obviously, it was my responsibility to get off the powerful drugs so I asked my pharmacist for help and he gave me a copy of Benzodiazepines: How they Work and How to Withdraw by Dr. Heather Ashton. Taking benzos was torture and tapering the drug doses to get off was likely to be worse. I found a psychiatrist who agreed to help but when he spoke of his “fast, easy method,” I sensed trouble. I asked him to read the Ashton Manual, which detailed a step-by step approach to get off the medications safely and effectively using diazepam [Valium] as the transition medication. He agreed to follow the regime. The withdrawal was on.
To get through the process successfully, I placed my anger where it belonged: directed at the physicians and the health-care system. Managing the symptoms was my responsibility. I was agitated and disorganized, so I hired a homemaker. I educated my friends about the irritability and agitation from withdrawal. I asked for their help. To lull myself to sleep, I knitted dishcloths. To help with the muscle aches, I took warm baths. To keep physically fit, I attended yoga classes. To help with my attitude, I took short walks in a nearby field, stepping carefully so as not to fall. I breathed deeply as I revelled in the swaying grasses and smiled at the bushtits flitting in the trees. Mostly I postponed major decisions, but my difficulty managing money was so urgent that I had to arrange assistance. When life was too much, a friend took care of my dog. I stopped driving. I prayed, which was a spiritual practice that I found helpful. Every morning, I reminded myself that I would be a new woman in a year.
The psychiatrist blamed me for the agitation and I feared he might stop the prescriptions. I had heard of doctors abandoning their patients and leaving them to go through withdrawal cold turkey. So when I was in the psychiatrist’s office I tried to sound calm by speaking slowly and lowering the pitch of my voice. I told him just enough so that he would keep writing the prescriptions for the lower and lower doses of diazepam.
Finally, on May 19, 2001, I took my last psychiatric drug. To celebrate the achievement, I called my friends to tell them of my success. I packed all my unused pills into a big bag and took them to the pharmacist announcing, “I did it.” I ordered a medical alert bracelet inscribed with the message that I had multiple drug allergies. Later in the afternoon, a truck delivered a bouquet of flowers. My triumph over psychiatry was official.
When I thought back on the withdrawal of the previous nine months, I realized that I had gone through horrendous withdrawals on four other occasions. The psychiatrist had stopped the Parnate in 1976 and the pain was like lightning shooting through my body. The psychiatrist stopped the Ritalin in 1977 and for a year I could not stay awake. The psychiatrist stopped the Trilafon in 1986 and I was in hospital for eight weeks. The psychiatrist stopped a whole bunch of antidepressants in 1994 and I could hardly breath, had horrible stomach cramps, violent vomiting and sometimes went unconscious. The acute withdrawals were over. Still, it would take months or possibly years to fully recover from the problems brought on by the benzos. Although the problems with sleeping, keeping calm and my memory difficulties were likely to linger, I was proud to be off all my psychiatric drugs.
For thirty-seven years, the steam-rolling effect of my medications had snuffed my feelings, stilted my thoughts and stifled my personhood. My achievement brought me back to life. Colours were brighter. Music sounded livelier. The fragrance of flowers excited me. I was ecstatic about my future, unware that I was about to learn that there was more to the new life than joyous excitement.
Part Three: My Life My Way
Life is good now. It has been twelve years since I last visited a psychiatrist or last taken a psychiatric drug. At first I was angry, really angry. To address the years of inept, wrongful and sometimes abusive care, I wrote letters to the Minister of Health, the Chief of the Health Authority, the Office of the Ombudsman and politicians. I requested funding to pay for therapy from my private psychologist as I needed to recover from the emotional damage caused me as a psychiatric patient. The officials said no. It was naïve to think that the government would pay without a long legal process with expensive lawyers. I had to accept that bad things happened to good people, including me.
The bad things changed me. I did not trust anyone, including doctors, and I constantly watched for danger. Some might have said that the excessive vigilance was paranoid, but paranoia occurs when there is no valid reason to constantly watch. I had excellent reasons. The psychiatrists, who were supposed to help me recover from the effects of my mother’s sexual abuse, actually added to the trauma, albeit in different ways. They had hugged and badgered me. They had shouted at me and a family doctor had sexually assaulted me. The psychiatrists had not listened and tended to jump to conclusions. The psychiatric drugs made it very hard to protect myself and I left their offices feeling less than human. Once I stopped seeing them, my confidence grew and I lowered my guard.
The childhood and psychiatric abuse altered my neurological, hormonal and other bodily functions and it was difficult to say which abuse left what mark. The doctors used medication to fix the changes and the taking of prescription pills became a habit. I took pills to calm me, pills to sleep, and pills to make me happy. A few months after stopping all medications, I was a bundle of nerves and I opened the cupboard for a pill. Living on autopilot as I had been doing for so long had to stop. I switched gears from absentmindedly resorting to pills, to purposefully calming myself without using drugs by breathing the way the psychologist had taught me.
One of my biggest challenges was to keep calm, and to this day I must monitor my activities. I pay close attention to what I watch on TV and limit my time with other people. I seldom go to the local farmers’ market and I hardly travel at all. I was a social person who now had to put together a quiet life. For the first few years of my new life, I decorated my home with my own sculptures, paintings and quilted fabrics. A kind visitor said that people should pay to see my place. Nowadays, I walk my dog, Anna, every day, visit close friends, attend church lunches and volunteer. I garden, sew and bake.
Sleep was another challenge. For over thirty-seven years sedating drugs put me to sleep and stimulating ones woke me up. Caffeine was a huge problem. One-half a cup of tea would spur me on for two to three hours, then a dopey feeling would overcome me and it took another day and a half to resettle. It was five or more years before I could get several nights a week of six or seven hours restful sleep. Luckily I was retired and I did not need to be alert on the job.
I worried about brain damage. How could I have swallowed an estimated 360,000 pills of powerful chemicals and not have some form of dementia? A year after getting off the drugs, I asked my psychologist to test my intelligence. The results went up significantly from the tests done when I was on medications. My brain was working just fine.
The psychiatric drugs had caused a lot of damage and I did not ever want to take any drug that might do the same again. Whenever a doctor wanted to write a prescription that I knew might harm me, I told him or her that I was “allergic.” When the doctor asked how I knew, I said that the drug made me agitated. He or she accepted my reasoning.
I have based my memoir, The Daisy Project, on my personal records that pile four feet high. I have the records from my physicians, hospitalizations, employers and disability insurance providers. I have the spreadsheets from the Ministry of Health that list the details of my prescriptions and visits to doctors. Throughout my illness, I kept a diary. While writing my story, I studied the records in depth. I learned that I was a tough woman who got better because I asked questions, expected answers, asked more questions and never gave up asking. Today, I am an active elderly woman and I speak out about the harm done to me by a mental health system that was supposed to care. My hope is that others who are now where I was can learn that it is possible to recover and to even muster the courage to speak out.