I have worked as a mental health advocate, teaching front line workers what it feels like to have a mental illness like mine. This is the speech I used.
There are things that I feel it is important for people, especially those who might work with the mentally ill, to know. As I try to discuss these things with you, I am bombarded by concern.
I am concerned that I will be attempting to explain a condition that, unless you have experienced it, you can not possibly understand. After all, your mind, the part of you that you will be using to try to understand me, works differently than mine. So, even in trying to understand me, you will be placing yourself outside of my experience.
Secondly, I know that I will be standing in a tidal wave of misinformation. Daily, I see representations of the mentally ill on television. I read about us in books and hear about us in conversations. The misinformation is so prevalent that it has become our societal truth. We are the ones who push people in front of subway trains. We are a burden on society. We’ve “lost it” with no explanation of what “it” may be. We are afraid of an honest day’s work, of the opposite sex, of being ignored. We could fix ourselves if we found our center, dealt with our issues or pulled ourselves up by our bootstraps.
It is a horrible thing that you may believe these stereotypes. It is even worse when our doctors believe them. Moreover – and this is the greatest disservice – most of us believe them. These stereotypes are so prevalent that we see the worst in ourselves – or distance ourselves so far from our disability that we do not seek treatment for fear of being categorized as crazy.
Myself, I fell into the latter category. I had experienced extensive symptoms of depression, on and off, from the time I was four. In school, I alternated between being an excellent student and a delinquent, skipping classes because I was to tired or disconnected to complete assignments or sit through a lecture. My mother called me “close to the water,” which meant that I cried a lot for no apparent reason. I had obsessive thought patterns surrounding death and the various misfortunes of the universe.
From my childhood, well into my teens, I was the victim of abusive individuals. In my adult life, many people have attempted to use this to explain away my mental illness. I think it is important that I make it clear that abuse does not a mental illness make. I see it as an aggravator of a pre-existing disability, like flashing lights to an epileptic. I believe that abnormal stress can worsen a mental illness or even bring a dormant proclivity to the forefront. As I grew up, both my disability and my abuse went undiagnosed. Through countless psychologists, teachers, guidance counselors and even a group home matron, no one was able to recognize my prevalent symptoms for what they were.
This I credit, in part, to the misinformation I spoke of earlier. Mental illness, in popular society is more myth than medical science.
Myth Number One: Depression is a bad mood that can be cured by doing something happy.
Depression is not a bad mood, although the inability to experience the chemical pattern we call happiness is one symptom. Depression is an inaccurate title for a biochemical disability caused by faulty neuro-transmitters.
As a result, at the age of twenty-five, I found myself tired, confused, unhappy, uncoordinated, unable to eat, unable to sleep, experiencing illogical panic attacks – even unable to stand and walk across my living room floor. I did not consider that I might have a mental illness. After all, I was not crazy, cuckoo, nuts or a few bricks short of a load. I was a logical person. I was just sick. The symptoms were physical, actual, and undeniable. I thought I was dying. Bright lights and noise seemed to erupt in my head. After all, our senses are neurochemical in nature. I would sleep at odd hours or, alternately, not be able to sleep for days. I would find myself unable to breathe, my thoughts twisted against me in illogical panic. It was not a matter of calming down or talking myself out of it. The chemical messages that offer you calm were not present for me, so whatever fear was in my mind was magnified and could not be subdued.
I was confused and afraid, as was my husband, Graeme. It took a while, but we agreed that there must be something very wrong with me. Thus began our emergency room visits. We must have visited every emergency room in the city, sometimes more than one in a day. I was sent away with a rag tag mismatch of diagnosis, including heartburn, a thyroid condition and asthma.
Finally, I made my third visit to the Women’s College Hospital emergency room on December 6th, 2001. I said, “If you don’t help me, I’m going to stand in traffic.”
Apparently, that is what they were waiting to hear.
Here I will tackle Myth Number Two: Suicide is a cop-out and the mentally ill are weak minded.
Speaking for myself and for all of my mentally ill friends, this could not be further from the truth. People assume that suicide is a choice between life and death. I have not found this to be the case. I believe that if offered the choice between dying and being well, any mentally ill person would choose wellness. However, we are not given this choice. To me, it was a choice between suffering without hope, and finding relief. If, during my life, I had been exposed to the truth of mental illness, I may have had the hope necessary to fight towards help. If I had been diagnosed when I was a child, or a teenager, and treated then, my symptoms would not have been able to develop to the point of complete devastation.
Finally, when I said those words, when my disability had become so prevalent that it threatened to end me, I was offered some support.
At WCH, I was tested for drug use. As a mentally ill person, I was now suspect. Found “clean” I was sent on to the Clarke, part of the Center for Addiction and Mental Health.
At the Clarke, a seemingly endless stream of doctors interviewed me. They asked me the same questions repeatedly, inconsiderate of the fact that I had not slept or eaten for days and was borderline comatose. Mostly residents, fresh from medical school, they eagerly attempted to summarize my life, condense it into an easily referenced title: my diagnosis.
My mind, though not performing at peak efficiency, recalled all of the images of the mentally ill that I had ever seen. I remembered a raving Jack Nicholson, “Here’s Johnny”-ing from inside his cuckoos nest. I remembered Jeffery Dahmer. I thought of Van Gogh, earless, and suffocated by insanity. I remembered the villains in Saturday morning cartoons. I remembered Kurt Cobain, Michael Hutchence and Michael Jackson.
To be told I had a mental illness was being told that I was everything bad and odd and broken down. I had never been taught differently.
The Clarke admitted me as an in-patient. I remember walking with a doctor to the elevators and travelling up to the 5th floor. I remember my panic when the ward door locked behind me and I took in the people around me. They were so sick it frightened me. It took less than a day to realize that this was also how I appeared to the world. In my fellow patients I found a treasure trove of information. Many were on their 5th or 6th visit, with periods of relief and wellness in between.
I was on suicide watch, which meant that the staff checked me every 15 minutes. I mostly tried to read, a passion that had been taken away almost completely. I would test myself against the medication to see if there was any improvement. If I could make it through one more page, one more word, then I knew it might be working.
You may assume that, in an institution dedicated to Mental Health, I would find some reprieve. This would assume, though, that the same stereotypes and assumptions that I had fallen victim to had not affected the doctors and nurses. It would assume that they were not human or afraid or poorly trained.
This brings me to Myth Number Three: The doctor knows what is best. If a patient and a doctor disagree, then the patient must be wrong.
One wonders why a doctor would spend years in medical school, just to do a poor job. Why would an architect study and work, just to create buildings that fall down? Doctors in the mental health field have disadvantages that few other doctor’s face.
- The brain is not mapped out. A great deal of assumption must go into their work.
- There is no common test for mental illnesses. Diagnosis is based on the symptoms of the patient. Communication issues, perception and even the disabled patient’s ability to explain their experience can limit diagnosis.
- Like any human being, a doctor has fears. If a doctor were to accept that mental illness is completely random, unpredictable and beyond the control of the patient, they would have to admit that it could affect them or someone they loves. They would not be able to elevate themselves above it or distance themselves from the immeasurable suffering of the person in front of them.
- As there is no quick fix for mental illness, hospital doctors do not get to see the results of their work. They do not see the well person that may emerge after months or years of treatment. This can create a sense of futility. It can open yet another avenue of blame that points toward the patient.
For these reasons and many more, I am not alone in my experience of the mental health system. I was put on a low dose of an ineffective medication. Within two weeks, I was sent home with no follow-up, no outpatient care, no primary care psychiatrist and no new skills for living with my disability. I had no way to map any progress I might make. I knew only slightly more about my disability when I left the Clarke than I had when I entered. The day before my discharge, I had overdosed on over 100 sleeping pills, my second overdose in a week. I had cut my throat with a broken Christmas ornament and slashed my body hundreds of times. I told nurses or doctors before hand that I knew I could not control it, but they told me that I needed to try harder. This was not a signal to the doctors that I needed better or more effective care. They took it as a sign that I did not want to be well. Why would I not want to be well? I had a wonderful marriage, an excellent career as a writer and a great group of friends. If I could have made myself well and enjoyed those things, I would have. They told me that 10% of people with mental illnesses die at there own hands, then sent me away as an acceptable loss.
I know there is an image of the patient, held and treated against their will. With over-crowding in our hospitals and the predominance of misinformed professionals, I found the opposite true. I was sent away when I needed care.
Repeatedly, I found myself in the Clarke’s emergency ward, begging for help. Repeatedly, I was sent away. If I cried, then I was being maladaptive. If I became angry at my treatment, then I was manifesting signs of a personality disorder. If I was calm, then I did not need help. As a mentally ill woman, I was constantly suspect. I could not be trusted. The symptoms of my disability were used as justification for not treating me. I was told that I was addicted to the hospital. My husband, who trusted that I needed help if I said I did, was told that they could not help me because I was not willing to do the work. He was baffled at this. It was frustrating and devastating. I was beat down and worn out.
Finally, after many visits, I took a stand. On February 4th, 2002, I demanded help. This resulted in the worst night of my life – and that is saying something.
They refused me help, cruelly, as I would not listen when they said it nicely. I was forcefully ejected from the building by two male security guards, both easily twice my size. I was bruised on my arms and legs, souvenirs of the token struggle I gave through my exhaustion and confusion. I was dropped, unceremoniously, into a snow bank, in below freezing weather, just feet from the door of the Clarke. I was immobilized. It was past midnight and for two hours I lay, wailing and shaking, as staff entered and left the building, ignoring me. I was not human to them. Finally, a psychiatrist’s assistant, against orders, took me to a coffee shop nearby and bought me a tea in an attempt to quell the shivering and bring warmth back to my hands. I was incoherent, ruined, broke down and soaking wet. I stayed there until dawn, surrounded by homeless men rejected from the shelter across the street for their drunkeness.
I could not go home, because I knew I was too ill for my husband to help me. He would have tried and failed and that would have ruined me. I was still trying to protect him from the monstrosity I felt I had become. In the morning I was again refused admittance to the Clarke, and later to St. Joseph’s. St. Joe’s sent me home in a cab. I think I would have killed myself, had I been able to. I did not have the strength. Instead, I contacted the Gerstein Centre. The Gerstein is a sort of safe house for the mentally ill. A quiet place with staff who don’t try to analyze or fix you, but are there if you need to talk. They help you if they can and serve as your advocate at the hospital if they cannot. What I needed, I received. I spent my three days there alone, in my room, recovering. I did not need talk, I needed to study my illness and come up with a plan to try to help myself get well.
After the Gerstein, I found a Psychiatrist to work with. I found an occupational therapist to help me with the everyday task of living. She made overwhelming tasks, like cleaning my living room, seem manageable. Just clear a path to the door, she said one week. Just clean off the couch. Try to eat a healthy meal. My husband and I did what we could on one income, with him working almost 10-hour days.
There were times we could not afford food. Times we walked until three in the morning, trying to figure out what to do when there were no avenues for help. Times held me while I cried or could not cry or just wanted to be near someone, even if they could not help me.
It was hard. Very, very hard. We had to seek out our own resources, find our own information. I had to lean on my husband when I should have been able to lean on the Mental Health system. I had to accept that there was no way a person can survive this, unless they became their own best advocate.
I do not tell you this to make you feel sorry for me – in fact, I have a genuine distaste for pity. I do not tell you this to vilify the doctors, the security guards or even the system. I tell you this to show you the strength our assumptions have – mine, the doctors and yours. I tell you this to present to you the divergent care given to the mentally ill as compared to any other ill or disabled group. There is no telethon for us. We are not heroes when we fight and survive. If a person in a wheelchair is unable to climb a set of stairs, the fault lies in the stairs. If an obstacle confronts us, the fault is ours. A person would not assume to tell an epileptic to stop having a seizure, realizing it is beyond their control, but we are expected to spontaneously cure ourselves as though we could. The power of ignorance is immeasurable. It causes normal people to accept horrible things.
If I had understood my own disability, I would have been a better advocate for my rights. Had the doctors understood it, treatment would have been offered when I needed it. If society could understand it, the mentally ill would not die in such high numbers.
Through my own zealous research, I came to understand my disability. I eventually found a doctor who was able to help me. He had seen it from both sides and his perspective, along with my husband’s care, saved my life. For the last three years, we have fought to surpass this disability. After many failures, we found an amalgam of medications, including Zoloft, Disipramine and Ativan; this has helped abate the more severe symptoms.
This brings me to the final myth. Myth Number Four: Anti-depressants are happy pills or placebos.
Anti-depressants fall into three major families. The most common ones are Seratonin Re-uptake Inhibitors. This helps keep my neurochemicals where they are supposed to be long enough for them to do their job. This allows me to live my life. A physical disability required a medical cure.
I am writing again. I am able to feel happy again. I am able to eat, sleep and move when I want to. I am not well, but I am better. I know that my disability is a beast waiting to pounce that I may have to fight my whole life, but I will not be fighting it ignorant, or alone.
It would have helped greatly to be treated like any other ill or disabled person. To know that it was not my fault. To know that I did not have a flawed soul, but a neurochemical disability. It would have helped to be spoken to with compassion. To have received requests instead of orders from doctors and nurses. It would have helped me to play a deciding role in my own treatment. It would have helped if the hospital had talked to my husband or friends to try to understand what I was like before I became ill. This would have allowed them to separate the illness from the woman. It would have helped if someone had talked to me when I cried, or left me alone when I wanted solitude, or listened when I said I was too ill to go home. It would have helped if the doctors had seen me, really seen me, instead of a broader medical spectrum.
If there is one thing I want you to take away, it is this –
When you are confronted by mental illness in the media, when someone uses the word nuts or psycho or schitzo, question it – out loud, if you can. When you find yourself laughing at the guy on the bus talking to himself, imagine that it is me, the me I was three years ago. Or, if you can, imagine that it is you. The you that you could one day be. Challenge your assumptions. Remember that information is the most important tool in saving the lives of the mentally ill. Remember that I am not crazy. I am a good and unique person who wants nothing more than to be well.