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Living (And Succeeding) With Mental Illness In The U.S.

Erin Richards |
December 16, 2009 | 11:58 a.m. PST

Staff Reporter

(photo courtesy of Skylar Murphy, flickr)
"Living with schizophrenia is like having a waking nightmare. It won't go away when you open your eyes, and you can't shut it off," said Elyn Saks, a Professor at USC's Gould School of Law, a recipient of a "genius" grant from the MacArthur Foundation in 2009, and an expert on the rights of mental illness patients. "With a regular nightmare, you can open your eyes and it goes away. You can't do that with schizophrenia. Saks has dealt with schizophrenia and its mania most of her adult life. 
In 2009 The National Alliance on Mental Health Illness (NAMI) graded the US in its report on America's health care system for adults with serious mental illness. Overall, the US received a D. NAMI points to several reasons for the failing grade. The lack of psychiatric treatment services, support programs and education for those in need are significant reasons for the failure. The report finds that across the US, "people with mental illnesses are neglected until they reach the point of crisis." 
Saks describes what it is like to live with schizophrenia with frankness and an almost detached clarity. "I had periods of disorganization where it felt like my mind was falling apart." She describes some childhood experiences where walking home from school, the houses would seem to be sending secret messages. "You are especially bad," Saks said the messages would mean to her. Her diagnosis of schizophrenia was "severe," meaning that she was not expected to be able to live any semblance of a normal life. She describes that she experiences mostly the positive symptoms of the disease, also characterized as the "psychotic" symptoms. These include delusions, hallucinations and an overall lost touch with reality. Saks' hallucinations, both auditory and visual can be more real to her than actually reality.  "There would be a spider climbing up the wall," she says, pointing to the wall, as though an actual arachnid were creeping across the room. Irrational thoughts are also common in people with schizophrenia. Saks admits that she can have thoughts that she had killed millions of people just by thinking about it, and the resulting anxiety and paranoia is debilitating. 
One of the biggest threats to proper care, treatment and support of people with mental illness is the lack of education available for patients as well as friends and families. Psychiatrist and medical doctor Norman Reynolds feels that this is the source of the most significant misconceptions about mental illness. "There is a lack of knowledge through formal education," said Reynolds. "There is a lot of fear that this mean's someone's hopelessly crazy, they have no idea how to respond. This causes widespread fear." Compared to other societies, our amount of education about mental illness is one of the greatest causes for social stigma. Rusty Selix, Executive Director and legislative representative for Mental Health Association in California (MHAC) points out that countries like Australia and New Zealand, which have systematic education and mental health literacy programs, have been widely successful in providing care for those with mental illness. "There is nothing systemic in the US; nothing that receives national support or funding," he said.  
This missing element creates a culture of misconception and anxiety surrounding the topic of mental illness. Coupled with lack of education, the perception of "crazy" makes us feel uncontrollable. Our minds hold our intelligence, loves, hates and innumerable facets of how we feel, act and are. To admit lack of control over our minds forces us to feel as though we do not control our person. "People are frightened of the unpredictability, and feel as though they don't know what we are going to do," said Saks. "That's a big myth. The truth is, most schizophrenic people on the street are much more likely to be victimized than victimizers." She urges people to educate themselves to gain a better understanding. Her own personal and ongoing education of her disease is part of what she feels allows her to control the illness and not let it define who she is. "Learn about your illness, learn about how it manifests in you and what the early warning signs are and what you can do to avoid symptoms."
Social stigma is one of the biggest obstacles to proper diagnosis and treatment. Kay Redfield Jamison is a renowned professor of Psychiatry at Johns Hopkins School of Medicine and a recognized expert on manic-depressive disorder, also known as bipolar disorder. In her personal memoir, An Unquiet Mind, in which she details the challenges of her illness, stigma is one of the reasons that her patients, and later she, rebelled against medication. "Manic-depression distorts moods and thoughts, incites dreadful behaviors, destroys the basis of rational thought, and too often erodes the desire and will to live," she writes. "The war that I waged against myself is not an uncommon one. The major clinical problem in treating manic-depressive illness is not that there are not effective medications-there are- but that the patients so often refuse to take them. Worse yet, because of the lack of information, poor medical advice, stigma, or fear of personal and professional reprisals, they do not seek treatment at all." 
Jamison describes what it means to experience the manic highs of bipolar disorder followed by the darkest lows which characterize the disease and plague its' sufferers. She writes, "There is a particular kind of pain, elation, loneliness and terror involved in this kind of madness. When you're high it's tremendous. The ideas and feelings are fast and frequent and like shooting stars, and you follow them until you find better and brighter ones." Bipolar disorder is characterized by the expression of the two poles of mood: mania and depression. Both can cause severe consequences and harm to the individual. Racing thoughts, ideas and ambitions are common. Increased energy and mood are also experienced. Jamison characterizes her mania by "Feelings of ease, intensity, power, well-being, financial omnipotence, and euphoria [that] pervade one's marrow." After the periods of mania severe bouts of depression follow, often with anxiety, guilt and hopelessness, as well as thoughts of suicide. "Overwhelming confusion replaces clarity. Memory goes... Everything previously moving with the grain is now against- you are irritable, angry, frightened, uncontrollable, and enmeshed totally in the blackest caves of the mind," writes Jamison. "It took me far too long to realize that ...freedom from the control imposed by medication loses its meaning when the only alternatives are death and insanity." 
Access to care is a struggle common to those living with mental illness in the US.  Proper medication and access to therapy and other treatments are essential to be able to live a normal and functional life. The NAMI report details that "Across the nation, people with mental illnesses are unnecessarily incarcerated, homeless, out of work, and unable to access needed medicines." Without care, insanity or death are common outcomes. Within the spectrum of living with insanity, homelessness or jail time is typical. "It's a very different disease," said Mindy Glazer, a NAMI communication specialist. "A lot of people don't know what do with it, and they fall through the cracks. Families get destroyed; people wind up homeless; people get depressed, people kill themselves." 
Pediatrician Hans Asperger, for whom the disorder is named, described this condition as a "dash of autism." Asperger's is characterized by awkward social behavior and an inability to relate to people. Tim Page, who has been diagnosed with Asperger's, is a Pulitzer prize-winning music critic for the Washington Post and a professor at the University of Southern California. He partially credits his successful career to the syndrome because it contributed to his obsession with music. "Music was the first thing in the world that made sense to me," said Page. "I was lucky that I had something to focus on... and that I was able to build a career on that."  However, throughout his life, Page has struggled to understand himself and others around him. In his personal memoir about growing up with Asperger's, he describes his anguish at not fitting into society. "In the years since the phrase became a cliché, I have received any number of compliments for my supposed ability to 'think outside the box.' Actually, it has been a struggle for me to perceive just what these 'boxes' were, why they were there, why other people regarded them as important, where their borderlines might be, how to live safely within them and without them." Page's Asperger's affects his ability to connect with other people and, as is typical of people living with his condition, he finds social situations stressful. 
Common aspects of Asperger's include severe social impairment, with the inability to read and understand other people, as well as social and emotional cues that seem almost instinctual to the unaffected population. Page writes, "my efforts have only partly succeeded; at the age of fifty-three, I am left with the melancholy sensation that my life has been spent in a perpetual state of parallel play, alongside, but distinctly apart from, the rest of humanity." Although Page openly admits his continued struggle with Asperger's, he feels that his reliance on certain treatments, including anti-anxiety, anti-depressants and occasional therapy have allowed him to live a mostly normal and full life. 
Kay Redfield Jamison, an expert on bipolar disorder, saw that her options were insanity or death, if she continued living without medication. Had she been so unfortunate as to be one of the millions of Americans without adequate healthcare; accessing proper medication and treatment may have been impossible. Saks credits much of her continued ability to live a highly functioning life and lead a successful career to her medication. She takes what she calls the "Cadillac" of medication for schizophrenia, allowing her to manage and separate delusional and erratic thoughts from reality. 
Saks, Page and Jamison have built lives for themselves, as well as successful careers, defying the stereotype that people with mental illness are unable to function and unable to live normally. They all credit adequate medical treatment, drugs and therapy for their ability to live.  Working for universities, however, they all have adequate healthcare coverage. However, nearly 58 million people suffer from a diagnosable mental disorder in the US.  According to the National Institutes of Mental Health (NIMH) an estimated 26.2 percent of Americans ages 18 and older -- about one in four adults -- suffer from a diagnosable mental disorder in a given year. Many of them are without adequate coverage for their mental health needs. According to statistics compiled by NAMI, 15 percent of uninsured Americans suffer from a serious mental health illness. The CDC estimates that in 2009 there were over 43 million people living without health insurance in the US. 
Even people who do have health care may be barred from proper treatment due to restrictions in coverage. Kirsten Beronio, J.D., the Vice President for Public Policy and Advocacy for Mental Health America, says these restrictions are one of the biggest problems with getting adequate care for people with mental illness. "Currently, health plans often impose stricter limits on the number of outpatient visits and inpatient days they will cover for mental health and substance use conditions, she said. "Medicaid, the single largest payer of mental health services in the U.S., allows for comprehensive benefits but state budget problems are leading to cuts in services." In California, Proposition 63, The Mental Health Services Act, outlines guidelines for numerous educational and support programs for mental illness. The problems arise due to severe lack of funding for these programs. Earlier this year, the Riverside Department of Mental Health cut 14 million dollars, eliminated 130 positions and closed three clinics. Outpatient case management designed to keep patients unnecessarily out of the hospital and jail was also slashed. These cuts affected about 2,500 would be consumers of these services. Echoes of these same actions are heard all over California due to shrinking budgets and a stagnant economy. 
Mental health support may receive a boost, however. The recent proposal of the Health Care Reform Bill, which has recently been passed by the House of Representatives and will be debated in the Senate, is touted as a step in the right direction for providing coverage that will significantly increase patient's abilities to seek treatment for mental illness. Rusty Selix, Executive Director and legislative representative for the Mental Health Association in California, feels that the benefits from the Health Care Reform Bill would make a significant difference to the currently crippled programs in the golden state. "In terms of funding, there will be an enormous boost to what the national Health Care Reform Bill will do. A tremendous addition to federal funding will help the state a lot. We're serving about 60 percent of the people who need it. The estimate is that this will definitely close that gap and get us to the 80 or 90 percent level." 
With access to the right treatment people like Saks, Jamison and Page will no longer be considered lucky survivors or exceptions to the negative stereotypes and social stigma associated with mental illness. Page and Saks continue as faculty at USC, Jamison at John's Hopkins. All three have found ways to utilize the profound knowledge they have gained by living with their conditions to build successful careers and raise awareness about the challenges of mental illness. Page knows himself now and admits that although he might sometimes avoid exposing himself to overly uncomfortable situations, he won't allow Asperger's to curb his enthusiasm for life. "I may not go to a whole lot of parties, but I try not to let it limit me," he said. Overall, his diagnosis allows him to examine his own nature and explain why he is good at some things and not at others. 
For Jamison, living with her illness has given her valuable insight and understanding. She writes, "Many years of living with the cyclic upheavals of manic-depressive illness has made me more philosophical... and more armed to handle the inevitable swings of mood and energy that I have opted for by taking a lower level of lithium." Her own education and experiences have allowed her to manage her condition. 
Saks feels that she is not alone in her exceptionality and is currently conducting a study to talk with other successful and professionals who have dealt with and manage schizophrenia. She plans to use her 500,000 dollars of MacArthur grant money to continue to promote awareness for people suffering from schizophrenia. Saks writes, "My good fortune is not that I've recovered from mental illness. I have not, nor will I ever. My good fortune lies in having found my life." 



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