I am rethinking my approach to the mental healthcare industry and I have found myself bristling when I read some often used language for describing experiences that my daughter has.
“Symptoms” of her “illness”. Perfect example.
I reread some of my earlier posts and was upset by the labeling and the jargon that I, too, have relied on to recount my daughter’s life.
When she moved to New York City from The Austen Riggs Center In Stockbridge, MA, a little over a year ago, she wanted to leave her past behind. She arrived in NY and, in fits and starts, created a new persona who was not mentally ill.
No one in her new group of friends knows her real backstory. She admitted to some people somethings. But, no one got the full report. Very few people know that she had been in treatment centers and hospitals for the previous four years. Even fewer knew the reason why. She told people she was an addict. A little half lie that seemed less threatening than saying she was mentally ill. (She is addicted to benzodiazepines.) When she gets scared, depending on the severity, she calls me.
If the pharmaceutical companies, hand in hand with the American Psychiatric Association, created the labels and “symtomology” of the “diseases” of the brain, can I use them in good faith? Do they really do service to my daughter and help her build a life separate from the stigma of mental illness?
Steven Morgan, a survivor of the system, choses not to use the word “symptoms” and instead refers the experience – the thoughts, emotions and behaviors. “Really hyper” or “full of energy” instead of manic. “I am sad” or “vulnerable” as opposed to “I am depressed”.
“Mental illness” infers that there is a disease.For the past twenty-five years, the psychiatric establishment has told us a false story. It told us that schizophrenia, depression, and bipolar illness are know to be brain diseases, even though… it can’t direct us to any scientific studies that document this claim.
The “magic bullet” model of medicine that had led to the discovery of sulfa drugs and antibiotics was very simple in kind. First, identify the cause or nature of the disorder. Second, develop a treatment to counteract it. Antibiotics killed known bacterial invaders. Eli Lilly’s insulin therapy was a variation on the same theme. The company developed this treatment after researchers came to understand that diabetes was due to an insulin deficiency. In each instance, knowledge of the disease came first – that was the magic formula for progress.
In the short span of three years (1954-1957), psychiatry gained new medicines for quieting agitated and manic patients in asylums, for anxiety and for depression. But, none of these drugs had been developed after scientists had identified any disease process or brain abnormality that might have been causing these symptoms. They arrived out of the post-World War II search for magic bullets against infectious diseases, with researchers, during that process, stumbling on compounds that affected the central nervous system in novel ways. ~ from Robert Whitaker’s, Anatomy of an Epidemic
The language that we are using today to describe mental function grew out of this false premise that these drugs were magic bullets fixing disease. Maybe, rather than referring to my daughter’s illness, I could say she is having a “bad experience” like she did in May when I went to visit her. Or “mental health issues” or “mental health problems”.
These experiences are hard to define.
The following excerpt is from my book Collateral Damage. When I wrote this I was heartbroken. I thought that I had a mentally ill daughter who would be cycling through psych med combinations for the rest of her life. She was getting worse. I was sad and felt very alone in my despair.
Mental health diagnosis is not an exact science. So much depends on the patients’ ability to describe symptoms – repeatedly, over and over. Patients lose hope as the retelling gets muddled. Keeping track of the various combinations of drugs and the time spent waiting to see if there are lasting results gets tangled up with the memory of the time spent weaning off the drug to get ready for the next attempt. The excruciating days when the drug doesn’t work and L is rendered beyond listless get confused with trying to recall the ones that worked for a while but quickly lost their effect. “Was that the one where I could feel the blood moving in my veins?” or “Was that the one that made me feel like if I had something to say it needed to get through miles of red tape in my brain?”
Mental illness is not quantifiable like the stages of cancer. There are few significant measurable markers. L is very sick. She is hospitalized frequently. No medicines have worked to deter the unrelenting anxiety, debilitating depression or crippling body dysmorphia. There is no surgery that can remove it or treatment that will irradiate her disease. There has never been a definitive answer or explanation from a doctor. L might or might not get better and she might or might not get worse.
It is like she woke up one morning and swung her legs over the edge of the bed and “Oh, damn! No left leg.” She learns to get around, handicapped, but she can do it. But, then, it is her right arm or a leg and an arm. She never knows when or what and, because some days she has it all and she feels great, it is devastating when it all falls apart – again.
My daughter still experiences “loss” but she is better. She has longer period of time between incidents where she is learning to live a life with meaning beyond a diagnosis. The diagnoses limited everything about her life. Who she was. What she could expect to do. How happy she could ultimately be.
Rather than having a “mentally ill” daughter, I now have a daughter. She is a person. A human being.
I think we both changed. I let go of the medical model that dictated my hopes and smashed my dreams. My daughter found the magic formula for her success: