GPSolo Magazine - October/November 2006
Living with Mental Illness
Mental illness is a broad term that describes a range of disorders, including those that can affect one’s ability to work, attend school, and have meaningful and satisfying social and interpersonal relationships. Some of the commonly identified disorders include major depression, bipolar disorder, anxiety disorders, post-traumatic stress disorder, schizophrenia, and alcohol and drug use and dependence disorders. Owing to their chronic nature, bipolar disorder and schizophrenia are often categorized as “serious mental illness” or “serious and persistent mental illness.”
I met Jane, my first client diagnosed with schizophrenia, in 1980, when I was assigned as the caseworker for her and her daughter, who had already been placed in foster care. Jane was hoping to regain custody; she was estranged from the child’s father, an ex-boyfriend who used marijuana heavily and with whom Jane would frequently get high. Jane had been an art student and had planned to pursue a master of arts degree but at age 22 began to hear voices that said her instructors were plotting against her and would prevent her from graduating. She had been able to function for a while, but the voices eventually became so intrusive, she could no longer go to class.
Jane’s story is in many ways typical of what happens to a person experiencing symptoms of schizophrenia, a chronic and disabling brain disorder. After Jane dropped out of school, she began to think that people on television were reading her thoughts and that her upstairs neighbor was controlling her behavior. Eventually, she was unable to leave the house at all. One evening, neighbors heard her daughter screaming and knocked on her door; in an incoherent state, Jane yelled at them, and they called the police. Jane was taken to the hospital and her daughter was placed in a foster home.
This was the beginning of Jane’s long and arduous (and very typical) journey with chronic mental illness and the mental health system. After periods of stabilization following a hospital stay, Jane would seem much better. Then, out of the blue, she would stop taking her medication, convinced that she was being poisoned or experimented on. Over time, Jane began to take on the look and the erratic lifestyle of a chronically mentally ill person. Jane’s treatment included a drug that produced disabling side effects called tardive dyskinesia, an intrusive movement disorder; her legs constantly bounced up and down and her tongue uncontrollably thrust from her mouth. Her fingers were stained deep yellow from her compulsive smoking.
Although she could not answer her own phone, Jane would phone her parents 20 to 30 times a day; if they didn’t answer, she would go to their home and bang on the door, screaming obscenities the whole neighborhood could hear. Her parents would call a mobile crisis unit or the police to take her to the hospital—where the cycle of medication and increased functioning would later deteriorate into suicide attempts and hallucinations.
After Jane described to me one of her more disturbing hallucinations, I could see the sadness on her face as she acknowledged how hard it was to think about caring for her daughter. Jane’s father, a successful attorney, and mother, an art teacher who suffered from major depression, attended weekly family therapy sessions and eventually learned to set appropriate boundaries. They and Jane’s sister planned to care for Jane’s daughter. There is no cure, so Jane will spend the rest of her life managing her symptoms.
The exact cause of schizophrenia has not yet been identified, although researchers now believe it to be the result of a combination of nature and environment. In the 1980s, when I first met Jane, clinicians believed in the theory of the “schizophrenegenic” mother—that the mother’s failure to create an appropriate emotional environment caused psychosis in the child. Fortunately, scientific research has propelled us beyond this simplistic model, adding biology and physiology to the diagnostic puzzle. Using new technologies such as brain mapping, researchers are able to examine complex chemical reactions that are different in people with mental illness. Evidence also supports the idea that trauma to the fetus during early pregnancy, such as a viral infection, may be an indicator for later mental disorders. Although a gene has not yet been identified, a family history of mental illness affirms a genetic link as well.
Schizophrenia affects men and women equally. Men usually experience onset of symptoms in their late teens and early 20s, and women in their early 20s to early 30s. Symptoms of schizophrenia are categorized as psychoses, which are further broken down into three types. Positive symptoms are divided into hallucinations (seeing, feeling, hearing, or smelling things that do not exist, including developed identities that give commands) and delusions (false beliefs that affect identity and behavior of self or others). Negative symptoms deal with behaviors: social withdrawal, extreme apathy, lack of initiative, emotional unresponsiveness, disorganization, and poor self-care. Cognitive symptoms affect thinking and functioning: thought disorders, difficulty focusing and completing tasks, memory problems, and impaired decision making.
The first step in treating schizophrenia is getting the correct diagnosis, and a board-certified psychiatrist is the most competent person to make it. Finding appropriate treatment interventions can be a long and frustrating process for all concerned—patient, family, and professionals— because it involves so many variables. The best programs provide (1) antipsychotic medications to relieve positive symptoms; and (2) psychosocial interventions to teach illness management skills, provide social and vocational training and family education, support attendance at self-help groups, and integrate substance abuse treatment, if needed.
According to results from the 2003 National Survey on Drug Use and Health sponsored by the Substance Abuse and Mental Health Services Administration, 4 million adults that year were diagnosed with both a serious mental illness and a substance abuse problem. (Statistics are available at www.oas.samhsa.gov/NHSDA/2k3NSDUH/2k3Results.htm.) About half (49 percent) received no treatment for either disorder; 39.8 percent were treated for mental illness only; 3.7 percent received substance abuse treatment only. Just 7.5 percent of adults with co-occurring disorders received treatment that met all of their needs. This is especially important because some “recreational” drugs can decrease the effectiveness of the antipsychotic drugs prescribed for schizophrenia, and stimulants (amphetamines or cocaine) can exacerbate symptoms. Nicotine, which the study included as a “drug,” is the most abused sub- stance: people diagnosed with serious mental illness are three times more likely to smoke than the general population.
Family members are usually the first to notice something is wrong at the onset of a mental disorder, such as a change in social habits, isolating, a peculiar fear or obsession, or illogical reasoning. Typically, family members at first make allowances for the person’s behavior. Then they may actively try to get the individual into some sort of treatment and feel confused and resentful that he or she refuses to go for help. Of course, many mentally ill people truly are unaware of their illnesses and do not understand what everyone else is talking about. Treatment advocates believe that this complication, similar to “denial” in addicts, is the single most significant reason why individuals with schizophrenia (and bipolar disorder) go off their medications or fail to seek treatment.
A person diagnosed with schizophrenia has a 10 percent lifetime risk of committing suicide. About 1.0 percent of the worldwide population, across all racial and ethnic groups, is affected with schizophrenia. But those considered vulnerable in low- income, high-need populations generally have less access to information and treatment. Rehabilitation programs help people regain daily living skills such as cooking, cleaning, budgeting, shopping, socializing, problem solving, managing stress, and even holding a job. Group housing programs offer support and supervision, with case management services also available to help people access financial assistance, medical referrals, and other resources. Many people with schizophrenia improve enough to lead satisfying, independent lives. In his book Surviving Schizophrenia: A Manual for Families, Consumers and Providers, E. Fuller Torrey, M.D., a renown psychiatrist and schizophrenia researcher, reported that after ten years, of the people diagnosed with schizophrenia, 25 percent had completely recovered, 25 percent were much improved and relatively independent, 25 percent were improved but required an intensive support system, 15 percent were unimproved, and 10 percent were deceased (mostly by suicide).
When I first met Peter, he was a founding partner in a thriving, successful small firm and represented several high-profile clients. He was energetic and gregarious and had graduated first in his law school class and made law review. After school, he clerked for a judge and then worked in one of New York’s top firms.
Peter was referred to the lawyer assistance program by another partner who was concerned about his erratic behavior, frequent mood swings, and disheveled appearance. Most recently, Peter had missed an important meeting with a client, and this had sparked his colleague’s intervention.
During our first meeting, Peter reported that he was “fine”—just tired and overworked. He thought his colleague’s suggestion that he call the LAP was a good one; after all, he was looking for a new psychiatrist. He believed the psychiatrist he’d been seeing was no longer helpful, so he had skipped the last three months’ appointments. By this time Peter was not taking his medications faithfully and was on his way to a relapse.
Peter told me he had been diagnosed with bipolar disorder ten years earlier, and since then he had been in and out of hospitals to treat episodes of mania and depression. Although he had abused alcohol and drugs since age 13, he had stopped drugging long ago and quit drinking four years ago with the help of Antibuse, a drug that makes users violently ill in combination with alcohol. He did not attend self-help or 12-Step meetings.
In Peter’s family of origin, there is a history of mental illness. Most notably, his father had been diagnosed with schizophrenia, and a sister also had been diagnosed with bipolar disorder. Through the years, Peter had alienated some family members, owing to manic episodes and bouts with alcohol.His mother and a sister were his current source of emotional support.
Since my first meeting with Peter three years ago, he has been hospitalized seven times, with each subsequent stay lasting longer than the previous. Before the most recent occurrence, he had left his sister’s home and gone missing for several days. When he finally called, barely coherent, he refused to say where he was but talked about suicide. Four days later, Peter told his sister where he was, she called the police, and he spent the next five months in a state psychiatric facility.
I last saw Peter a few months ago. He looked and sounded well. He likes his new doctors, and the medication he’s taking is helping tremendously. Peter closed his practice in the interim, with the help of a LAP volunteer. He is currently working at temp jobs and has been going on interviews at large firms. Realistically, he doubts that he can manage the pressure.
Bipolar disorder, also known as manic-depressive illness, is a chronic, disabling brain disorder. The hallmark symptoms are dramatic shifts in mood, energy, and behavior, vacillating between manic, highly energized moods and hopeless states of deep depression. There is no single cause of bipolar disorder. Like schizophrenia, it is considered the result of a complex combination of nature and environmental factors. Bipolar disorder affects men and women equally and occurs across all ethnic and socioeconomic groups.
Medication and psychosocial treatment help individuals with bipolar disorder by stabilizing mood swings. Because bipolar disorder is chronic and recurrent, mood changes can occur even in individuals who follow their treatment plan. Most, however, live healthy, productive lives with the help of treatment.
The classic form of bipolar disorder involves episodes of mania and depression and is called Bipolar I. Some people experience milder mood swings, or “hypomania,” which is Bipolar II. “Rapid cycling”—a serious phase of the condition—occurs when a person experiences four or more episodes within a 12-month period. Without treatment, the course of the illness can worsen, and symptoms can become increasingly frequent and severe. During the course of treatment, changes in medication may be needed to reduce the risk of relapse, to prevent a new episode, and to relieve disabling side effects that include tremors, weight gain, nausea, and anxiety.
Bipolar disorder affects nearly 1.0 percent of the adult population over 18 years of age. Symptoms typically develop in late adolescence or in the early 20s, although some, like Peter, are affected later in life. According to the World Health Organization ( www.who.int/healthinfo/statistics/bod_bipolar.pdf), bipolar disorder is the seventh-leading cause of nonfatal disability worldwide.
Stigmatization of and discrimination against those with mental illness is still widespread. The media play a significant role, focusing on the few mentally ill individuals who commit violent acts rather than the many who are treated and improve the quality of their lives. Stigma perpetuates the myth that people with serious mental illness can never reintegrate into the community.
Although scientific research can and does tell us more about the workings of the brain, which in turn produces more effective treatment and safer medications, commitment from every level of society—community, family, health care systems, law—is needed to secure an equitable and productive future for people with mental illness. In The Hidden Prejudice: Mental Disability on Trial, Michael L. Perlin, a professor at NYU Law School, lists the following changes that must be addressed in order for the rights of the mentally ill to be adequately represented:
• judges’ attitudes toward patients
• counsel’s attitude toward patients
• understanding that patients have a right to refuse treatment, and why
• correcting the misperception that drugs are the only “cure”
Hope and Recovery
In 1948 a group of individuals just released from a state psychiatric hospital believed that they and others could reclaim their lives and reenter the community. Together with dedicated volunteers, they created Fountain House, the first program to use the “clubhouse” treatment model. Through deinstitutionalization, individuals with mental illness who would have been hospitalized 40 years ago are living in the community today. Clubhouses provide such men and women with a supportive network, friends and a sense of belonging, educational opportunities, housing, and jobs. By focusing on each member’s potential for successful reintegration within the community, this unique environment has become the model for more than 400 similar programs in 32 countries. Clubhouse members work in partnership with clinical staff in every function of the clubhouse operation, including maintaining a healthy self-image and complying with their treatment plans.
The future for people diagnosed with mental illness depends on a commitment to research and education, which can alter the public image of a “typical” patient; to improved availability of and access to services for every socioeconomic group; and to support for mental health advocates, consumers, families, and communities.
International Center for Clubhouse Development
National Alliance on Mental Illness
National Institute of Mental Health
National Mental Health Association
Substance Abuse and Mental Health Services Administration
Eileen Travis is director of the New York City Lawyer Assistance Program. She can be reached at firstname.lastname@example.org.