In This Chapter
Recognizing the fundamental importance of hope
Facilitating the recovery process
Meeting the basic needs of people with schizophrenia
Identifying the roadblocks you’ll encounter
People with schizophrenia are, above all else, people. They have hopes, V dreams, and human needs like everyone else. When you’re in the trenches dealing with the day-to-day challenges of the disorder, remembering this can be difficult.
Every day, people with schizophrenia live in a society that moves fast and often doesn’t take their needs into account. Life doesn’t stop while people with schizophrenia recover.
Although coping with an illness is vitally important, planning for the rest of the story is equally important. In this chapter, we look at the roadblocks, sometimes seemingly insurmountable, standing between the person with schizophrenia and a fulfilling life, and the realistic goals for normal living that can — and should — be set. Finally, we offer suggestions on how you can help move mountains for your loved one on their journey.
Overcoming Negative Expectations
About 40 years ago, two educational researchers conducted what has become a classic study about the effects of expectations. They found that when teachers expected students to succeed, the students succeeded, and when teachers expected them to fail, the students failed. In other words, what other people think you can accomplish can make a huge difference in what you do accomplish. The idea that expectations can affect outcomes has become known as the self-fulfilling prophecy. We believe that the same theory holds true in the lives of people with schizophrenia.
For many years, people with schizophrenia were expected to live a life behind institutional walls, with little hope of recovery and the ability to live a normal life. Fortunately, today’s expectations are much more hopeful, although there’s still a long way to go.
The expectations that people with schizophrenia set for themselves or that others set for them can dramatically influence whether their lives are “lives well lived.” People with schizophrenia, their families, and their friends need to maintain a sense of hope and optimism. This idea isn’t Pollyanna-ish — on the contrary, it’s realistic! Like heart disease, diabetes, or asthma, schizophrenia should be thought of as a chronic but manageable condition that involves cycles of relapse and recovery. You and your loved one may not have exactly the same life you imagined (no one ever really does), but it can still be a satisfying and productive life!
Expectations for people with schizophrenia have undergone a tremendous metamorphosis over the years. In 1896, German psychiatrist Emil Kraepelin used the term dementia praecox (early dementia) to describe the symptoms that are now encompassed by the term schizophrenia. He and others of his era saw the disorder as one with an inevitable downward and worsening course.
Time and solid research have disproved that idea. Long-term follow-up studies of people with the disorder have proven that schizophrenia is a chronic, but manageable disorder — typically with remissions when symptoms disappear and relapses when symptoms worsen. With early intervention, good treatment, and proper care, periods of wellness are longer, there is less disability, and more people (even most) are able to lead better lives.
If you or someone you know has ever had an elderly relative who received custodial care hidden in a remote state hospital for most of his adult life, never getting better or living a somewhat normal life, get that depressing, hope-crushing picture out of your mind. Mental illnesses are treated differently today.
For more on why schizophrenia was once seen as hopeless, see the nearby sidebar, “The low expectations of the past.”
The low expectations of the past
The reason why schizophrenia was once viewed as a grim, and perhaps even hopeless, diagnosis can be explained, in part, by several phenomena:
Lack of treatments: Until the mid-1950s, when the first generation of antipsychotic medications (major tranquilizers, neuroleptics) were introduced, the only way to control the positive symptoms (hallucinations, delusions, agitation, disorganized thinking) of schizophrenia was with sedative drugs such as barbiturates or chloral hydrate. These drugs had to be given at doses that caused sedation, stupor, and sleep before the positive symptoms were controlled. People medicated this way couldn’t function and needed to remain in a protected environment.
The advent of antipsychotic medications to control positive symptoms without making people zombies raised the specter that people with schizophrenia could return to their communities. Fortuitously, deinstitutionalization (a social movement oriented to treatment in the least restrictive environment) was taking hold and changed the once-dismal outlook for patients and families. (For more on deinstitutionalization, check out the sidebar “Overcoming the broken promises of deinstitutionalization,” in this chapter.)
A life of institutionalization: Because there were no effective treatments for controlling symptoms until the last half-century, people with the disorder had to be hospitalized (mainly for their own protection) for long periods of time, usually far away from their homes, families, and friends. In these asylums, there were no opportunities for the normal stimulation, socialization, and learning that others have living in the community — so people with schizophrenia became impoverished in both thought and behavior and began to look and act “institutionalized,” distinct from the symptoms of their illness.
The clinician’s illusion: Another reason for negative expectations is the phenomenon known as the clinician’s illusion. Clinicians (especially psychiatrists) are more likely to see patients with the most severe and intractable forms of schizophrenia rather than milder, more treatable cases. For decades, this situation biased their perceptions about what the disease looks like and how effectively it can be treated. Only when large-scale follow-up studies of entire groups of people with schizophrenia were analyzed did researchers realize that many people with schizophrenia have fairly successful outcomes.
Achieving the Goals of Recovery
An emphasis on recovery has provided renewed hope for people with schizophrenia, as well as their families and friends; it has also changed the expectations of people who provide treatment and care. The concept of recovery suggests that individuals shouldn’t be reduced to their illness or symptoms alone; instead, they are “whole” individuals who have the same dreams and aspirations as anyone else does. After all, no one, regardless of her condition, wants to be viewed as only a patient — that denies the individual her personhood.
Although recovery may not take place along a straight line, it generally has a positive trajectory (even though there may be some bumps along the way). Recovery shouldn’t be relegated to the later stages of schizophrenia — it should be an important concept from the very start of the illness.
In the same way that people with physical disabilities are empowered when they have equal access (for example, a person in a wheelchair who uses a ramp to mount a curb or an elevator to catch a train), people with mental illnesses require and deserve the basic supports and accommodations they need to achieve the promise of recovery.
One essential element of recovery is the idea that people with schizophrenia should be able to manage and self-direct or self-determine his own care, to the extent possible, making decisions about the range of treatments or supports that are acceptable to him. This control is important for the individual’s self-esteem.
The fact that patients vote with their feet, and will only comply with services that are acceptable to them, can positively or negatively impact their treatment plan. For example, if a program isn’t welcoming and doesn’t treat clients respectfully, they won’t attend regularly.
The idea that a person with schizophrenia could recover enough to direct her own care is a fairly recent one. Recovery today has a much more positive definition than it did several decades ago, when full recovery and a move back into normal society were rarely possible.
The notion of recovery implies that the person with schizophrenia — without being cured — can still live life fully with the illness: living with as much autonomy as possible despite any residual impairments or disabilities. Recovery is an active and ongoing process that continues over time.
Maybe it’s more accurate to use the verb, recovering, because it reinforces the ideas that people continue to grow and change incrementally, but continually.
Recovery is multifaceted because schizophrenia affects different domains of functioning in different individuals in different ways. For example:
Someone’s hallucinations and delusions may disappear completely with antipsychotic medication, but that person may still be unable to experience pleasure (in what’s called anhedonia).
An individual may no longer be suspicious or have feelings of paranoia, but she may be unable or unmotivated to seek work.
A person may gradually ease into full-time work but may be unable to completely quell the voices he hears while working.
Overcoming the broken promises of deinstitutionalization
Few advances in mental-health treatments were welcomed as enthusiastically as the move to “mainstream” people with mental illness instead of keeping them warehoused in psychiatric hospitals, overmedicated, undertreated, and accorded few of the basic human rights. Popular movies and topics like The Snake Pit portrayed mental institutions as horrific places, and the move to community care was the result of good intentions.
Having good intentions, however, doesn’t always result in positive solutions. As primitive, ineffective, and sometimes inhumane as treatment was in the era of asylums, patients in these institutions were at least assured three square meals a day, clothes on their back, a roof over their heads, and a modicum of safety. Unfortunately, that isn’t true today. With all the advances that have been made in scientific knowledge and improved treatments, and the growth of patient and family advocacy, there are still formidable barriers to decent care for people with serious mental illnesses like schizophrenia in the United States. In many cases, taking people out of institutions and putting them on the street has done a tremendous disservice to them, leaving many much worse off than they were before.
In essence, the movement toward deinstitu-tionalization in the United States ended up as a broken promise. Changes in federal legislation prohibited Medicaid reimbursement for inpatient stays in state mental hospitals. So in an effort to cut costs to state governments, patients were released from these institutions to communities that were often less than welcoming. The full array of community-based treatments and basic supports (especially affordable housing) never materialized for those who were most in need. Even today, too many people with schizophrenia still cycle in and out of local jails; live in
substandard housing, in shelters, or under bridges; wait hours in crowded hospital emergency rooms only to be sent back to their families or the streets without treatment; and swell the ranks of the nation’s homeless population. (It’s estimated that about one-third of the homeless population suffer from severe mental disorders — the majority of them with schizophrenia — including many who are dually diagnosed with mental illness and substance-use disorders.)
One of the scariest end results of deinstitutionalization is the ability of people with mental illness to simply disappear into the streets and alleys of our nation’s cities, leaving behind panic-stricken, desperate families with no way to contact them. If your loved one disappears, contact your local police department immediately, as well as the police departments in areas where you think your loved one might turn up. If she remains missing more than three days, the information you provide will be handed over to the FBI, and your relative will be considered an “endangered adult.” Many families have had success in locating a missing relative after preparing a flyer with a picture and identifying information and posting it in shelters, hospital emergency rooms, and other places where their relative might go for help.
Despite these grim facts, there’s much to be hopeful about in the aftermath of deinstitutionalization. With the right support systems, people with schizophrenia are much freer today to work at the jobs of their choice, live where they please, and live much like everyone else. The key to living a satisfying life is to identify goals, plan for them, and work toward them step by step. There will be bumps and detours along the way, but at least the ability to pursue the goals your loved one chooses for himself are there in a way they never were for those with schizophrenia several decades ago.
Being realistic about immediate “cures”
Medicine in general looks for “cures” as the definition of successful treatment. Although this approach may work in the case of surgery or a broken limb, chronic diseases — including schizophrenia — aren’t cured in one simple step. All the snake-oil salesmen’s claim for miraculous cures through use of a newly discovered herb oil have failed to deliver a permanent “cure” as well. It’s more realistic in chronic diseases to see the stabilization that results from treatment as a positive recovery.
You and your loved one should think of recovery as a process with parallel paths and multiple goals rather than a single path with one endpoint.
Most important, the concept of recovery acknowledges the rights of all people, including those with disabilities, to have rewarding friendships, meaningful employment, and enjoyable leisure-time pursuits. It empowers them to set life goals and to move toward them instead of waiting for “total cure” or even remission of symptoms before engaging in life.
You need to convey to your loved one your confidence in her ability to help herself. When family members understand the notion of recovery, they’re less frustrated about rough patches — they see them as part of the illness as opposed to a failure of their loved one or themselves, which helps them cope more constructively.
Breaking Through the Roadblocks
Because the burden of mental illness can be financially and emotionally overwhelming, people with schizophrenia and their families need to rely on community support. It takes a village. Yet, some already-gaping holes in the so-called safety net are getting noticeably larger rather than smaller. A number of recent national surveys have described the roadblocks to recovery; we summarize them for you in the following sections.
Experiencing long delays in getting treatment
Because people typically tend to minimize or be unaware of early symptoms of schizophrenia until the disease is undeniable, there’s a lengthy gap between the time symptoms first appear and when they’re treated (see Chapter 4 for more on the course of schizophrenia). People with schizophrenia experience
delays averaging 81/2 years before they get treated — despite research suggesting that early recognition and intervention improves outcomes and minimizes disability. (It’s estimated that two-thirds of people with mental disorders remain untreated!) These alarming statistics point to the need for improved mental-health literacy that extends to families, family doctors, teachers, employers, and the general public.
Also, quality mental healthcare is unaffordable for many individuals and families. Despite advocacy efforts to implement mental-health parity legislation at the federal level and in many states, disparities between physical and mental-health coverage remain in the form of co-payments and coverage (see Chapter 7 for more on ways to finance care). State Medicaid and managed-care formularies often restrict access to more costly but effective psychiatric medications.
To ensure that your loved one gets treatment as early as possible, trust your instincts. You know your loved one better than anyone else. If you think something is wrong with him (perhaps after reading this topic or learning some of the warning signs of schizophrenia), be direct and suggest that he see a mental-health professional for an evaluation. Gently explain to him that the symptoms he’s experiencing (and you’re noticing) are often associated with a treatable mental disorder and that you’re concerned enough that you want him to check it out.
Don’t be surprised if he doesn’t think there’s a problem and dismisses your concerns — it may take some time for him to come to terms with his symptoms and accept help. Unless the situation is an emergency, be patient. Just because you finally realize something is wrong doesn’t mean he’s on the same page. (See Chapter 6 for concrete suggestions on how to deal with lack of insight.)
Finding your inner activist
If you want to work to create change in the treatment of mental illness, or understand more about the systemic problems with mental-health care, check out the following:
Achieving the Promise: Transforming Mental Health Care in America: You can get this 2003 report online at www. mentalhealthcommission.gov/ reports/reports.htm or order a copy by calling 800-789-2647 and asking for item number SMA 03-3832, Final Report for the President’s New Freedom Commission on Mental Health.
Schizophrenia: Public Attitudes, Personal Needs: This report, published by the National Alliance on Mental Illness (NAMI) in June 2008, is available online at
www.nami.org/schizophrenia survey.
The Insanity Defense: HowAmericas Failure to the Treat the Seriously Mentally Ill Endangers its Citizens, by E. Fuller Torrey (W. W. Norton)
Crazy, by Pete Earley (G. P. Putnam and Sons)
On the other hand, don’t wait more than a week or two. Wait for a calm moment when he’s open to listening and raise the issue again. Don’t let yourself be deluded into thinking that if you just ignore things, they’ll get better. In most cases, untreated mental disorders just get worse. If your loved one does have schizophrenia, you want to get on top of it sooner rather than later, to improve the outcomes.
When your loved one agrees to see someone, offer to do the legwork to find a clinician or suggest how he can go about it (see Chapter 5). If your loved one is insured, he needs to check with his insurer (or you can do so on his behalf) to find out about the mental-health provisions of the healthcare policy. If he isn’t insured, find out whether your community offers free or low-cost services. (See Chapter 7 for advice on paying for care.)
Having no place to go in a crisis
According to a recent survey by the American College of Emergency Physicians, nearly 80 percent of emergency rooms report that waits for psychiatric patients in crisis average four hours or more; another 10 percent said waits typically exceed a day. Imagine sitting in a waiting room for four hours or more with someone who is agitated, upset, and actively psychotic and being told to wait before you can even speak to a doctor!
The number of psychiatric hospital beds in most communities is insufficient to meet the need. Since 2000, there has been a 12 percent decline in the availability of community beds for individuals whose treatment needs can’t be met in outpatient programs. In 2008, the Treatment Advocacy Center reported a shortage of 100,000 psychiatric beds across the United States. The escalating costs of healthcare, an acute shortage of psychiatrists, and a scarcity of community-based alternatives to hospitals have coalesced to create a crisis in mental healthcare.
Once considered places of last resort for individuals with serious mental illnesses who were at risk of harming themselves or others, even state hospitals are no longer open to many people who need them. With states transferring financial burdens to the federal government, many state hospitals have reduced the numbers of their beds and now have lengthy waiting lists. As a consequence, with no hospitals or crisis alternatives available in their communities, people may be sent to hospitals far away from their homes and families or left to fend for themselves on the streets. This situation is particularly acute for young children and teens with schizophrenia.
To ensure that you and your loved one aren’t left in a lurch during a crisis, prepare ahead. Check out resources in your community before you need them. Contact your city or county mental-health department and ask for information about crisis services — and keep it in a place where you can easily find it when you need it (see Chapter 14). Check with the state mental-health authority to become familiar with the laws for involuntary commitment and assisted outpatient commitment, in case they’re needed.
When you first interview psychiatrists, find out how they could help you in the event of a psychiatric emergency. Do they have admitting privileges at a local hospital or contacts with a crisis-response team?
If your loved one is living in a supervised or semi-supervised setting that is adequately staffed, or if you’re able to sustain him at home, it may turn out that the crisis is relatively brief, and you may be able to ride out the crisis while he receives outpatient care. Many times, an acute crisis can be stabilized fairly quickly with rapid medication management and a bit more support from you, her psychiatrist, and other members of your team. Finally, both you and your loved one need to do all that you can by being alert to the earliest signs of relapse (see Chapter 18) and staying on medication that’s working.
Looking at mental illness as a crime
According to the U.S. Department of Justice, mental illness is three to four times more prevalent among individuals in the criminal-justice system than it is in the general population. Forty-four percent of people with serious mental illnesses are arrested at some point in their lives. This is because people with untreated mental illness often get picked up for petty charges and misdemeanors that are due to their illness — sometimes by compassionate police officers who fear for the safety of these individuals on the streets. Police are twice as likely to arrest people who have mental illnesses, although most of them need treatment and services.
Jail diversion programs such as specialized mental-health courts (developed jointly by mental-health and criminal-justice providers) can provide more appropriate and less costly services. (See Chapter 14 for more about mental health courts.)
The Los Angeles County Jail has been called the largest mental-health treatment facility in the world, spending more than $10 million per year on psychiatric medications alone. Nationally, there are more people with mental illness in state prisons than there are in state psychiatric centers.
If your loved one is arrested, you’ll have to move into action mode and intervene quickly. Following the steps outlined in Chapter 14, try to prevent the arrest by explaining that your relative has been diagnosed with schizophrenia — a brain disorder — and needs mental healthcare. In communities, where there are no formal jail-diversion programs, suggest that the officer divert your loved one to a psychiatric emergency room for evaluation instead of making an arrest.
Make sure that your loved one always carries some form of identification card, either with your name as an emergency contact or that of her case manager, so the police will know who they can contact in the event of an emergency.
Being over-represented among the downtrodden
Unfortunately, there’s a strong association between schizophrenia, poverty, and homelessness. The large majority of people with schizophrenia have a hard time making ends meet and are often forced to live on the fringes of society. Mental disorders are the leading cause of disability among adults — and if you can’t work in this country, you tend to wind up among the very poor.
Approximately one-third of individuals with mental disorders live below the poverty line. Nearly three out of four live on less than $20,000 a year; one in five lives on less than $500 a year. Plus, bureaucratic barriers make applying and appealing unfair denials for Supplemental Security Income (SSI), Social Security Disability Insurance (SSDI), and food stamps challenging for people with mental disabilities. And they may fear losing their benefits if they become employed at competitive wages.
With the stock of safe, affordable housing eroding, individuals with schizophrenia are often last in line for public housing in their communities. Thus, finding a decent place to live can be extremely frustrating. (Chapter 13 describes some of the limited options.) As a result, nearly three out of five individuals rely on their family or friends for financial support; half depend on them for housing. People with disabilities deserve safe and stable housing and opportunities to work and become self-supporting.
If your loved one has no money, she’ll have a hard time paying for treatment of any kind. To help her, make sure that she has applied for all the benefit programs to which she is entitled, such as SSI, SSDI, Medicaid, food stamps, VA benefits, and so on. The Social Security Administration (SSA) offers an online Disability Planner (www.ssa.gov/dibplan/index.htm) explaining how to apply and qualify for these programs (see Chapter 7 for more information).
The eligibility requirements for public benefits are confusing, and filling out applications and providing supporting documentation can also be a daunting task. Your loved one will likely need your assistance in filling out forms and keeping all relevant information organized and in one place. In fact, you may want to seek outside advice from an expert, someone who understands the intricacies of these programs, perhaps a social worker or case manager.
If your loved one has troubling managing money, SSA and the VA have representative payee programs that allow another person (a relative, a professional, or a program) to oversee and assume responsibility for helping the individual to budget her money.
Working provides more than a paycheck to someone with schizophrenia. To feel productive, is vital to recovery. There may not be a straight line from A to B, but various vocational rehabilitation programs (see Chapter 7 and Chapter 14) can help your loved one define achievable steps to employment.
Receiving substandard healthcare
Disparities in healthcare are so great that people with schizophrenia die 25 years earlier than their peers. One out of four people with a mental-health disorder, substance-abuse disorder, or co-occurring mental-health and substance-abuse disorders has no health insurance at all, which sets the stage for problems in getting timely healthcare. Many people with schizophrenia never see any other physician besides their psychiatrists, who, unfortunately, are likely to focus only on their mental disorder as opposed to their overall health.
Yet, people with schizophrenia are more prone than the general population to get diabetes, heart disease, and other conditions (sometimes due to the side effects of antipsychotic medications), all of them chronic physical conditions that could be better managed with appropriate treatment. General medical needs are too often overlooked, ignored, or simply not addressed by primary-care doctors (if the person with schizophrenia even has a primary-care doctor). Nearly half of people with schizophrenia report that doctors take their medical needs less seriously upon hearing their psychiatric diagnosis.
Make sure that your loved one continues to be seen by a primary-care doctor the way you’re seen — for yearly exams and other basic and preventive care. If your loved one is taking one of the newer atypical antipsychotic medications (see Chapter 8), you need to encourage her to monitor her weight and be seen by an endocrinologist to lessen the risk of diabetes.
In addition, you want to encourage your loved one to get regular exercise. Aside from its obvious health benefits, exercise can help lessen symptoms of anxiety and depression. Joining a gym or attending an adult-education class focused on wellness can help your loved one improve her self-esteem and find new friends.
Dealing with a complex treatment system
Even when services exist, people with schizophrenia often find it difficult to access appropriate care. They may not know where to turn or may get bounced back and forth between providers. For example, even though co-occurring mental-health and substance-abuse problems are commonplace rather than an exception, a substance-abuse program may not accept people with schizophrenia, and mental-health programs may not admit people with substance-abuse disorders. Instead of what has been termed “ping-pong therapy,” people need an integrated approach to their disorders that addresses both conditions simultaneously.
Also, people may have to depend on costly and sometimes difficult-to-access public transportation or travel long distances to keep appointments with therapists. Like general medical care, navigating the maze is difficult under ordinary circumstances, but it’s especially difficult if you aren’t feeling at the top of your game. Think of the discomfort of riding in a train, feeling suspicious about the person sitting beside you, and having to remember which stop to get off at. When and if a person finally arrives there, rushed and often underpaid providers may be insensitive to sensitive clients and further undermine their already low self-esteem by failing to listen to them or involve them in treatment decisions.
When people have no insight, their families often encounter inordinate difficulties convincing mental-health programs that they need help until their relatives have been overtly dangerous to themselves or others. Many providers hide under the cloak of the Health Insurance Portability and Accountability Act (HIPAA), not only refusing to talk but also refusing to listen. (For more on HIPAA, turn to Chapter 14.)
Most of these problems are driven by the way services are funded and organized, leaving individuals and families burdened to find ways to bridge the gaps and make care more continuous. There are too few ACT teams (see Chapter 5) to provide aggressive outreach and follow-up, and the numbers of people on existing caseloads are often far too high. It’s estimated that these programs only reach one in five persons who need them.
To find programs that can provide your loved one with an integrated approach to care, contact your state or local mental-health authority to find out about case-management or ACT programs in your community. Having a person or team who can oversee care helps assure continuity across different programs and providers. Additionally, that individual can serve as your loved one’s advocate in making sure that services are accessible and that his needs are being addressed in a respectful manner.
Experiencing gaps between what we know and what we do
Clearly the medical profession’s knowledge about schizophrenia and its treatment has been expanding at an exponential pace. Especially in the areas of both pharmacologic and psychosocial treatments, multiple articles and updated treatment guidelines have been published. These have been generated by research scientists, government-convened groups (like the National Institute of Mental Health) and professional organizations (like the American Psychiatric Association), all with the aim of updating clinicians with evidence-based findings that they can use to improve treatment outcomes.
Unfortunately, old habits (including treatment beliefs) die hard, and new information and knowledge about treatment hasn’t trickled down to the people who provide care as readily the researchers would like. Thus, many treatments and services that should be in place and that have clear scientific backup aren’t being used by all healthcare providers.
Topics like this one and articles in daily newspapers and online (at sites such as www.schizophrenia.com) play an important role in reporting research findings to audiences who need to know about them. Don’t hesitate to ask your loved one’s clinician about whether your loved one could benefit from the advances you’ve read about.
You need to be a vocal advocate for your loved one, especially if she can’t advocate for herself. This requires constant vigilance (although you don’t want to make your loved one doesn’t feel like you’re hovering over her) so you understand her needs, as well as continuing education so you can keep up with the rapid pace of discovery. Read all you can whenever you can. Attend lectures and local, statewide, and national conferences sponsored by NAMI.
Facing pervasive stigma and discrimination
Myths and misperceptions still get in the way of full community acceptance of people with schizophrenia (see Chapter 16). Public awareness and understanding is still limited. In a recent NAMI survey, only one out of four people surveyed were familiar with schizophrenia. For example, people still associate schizophrenia with split personalities and serial murderers they see on TV; they don’t realize that people with schizophrenia are ten times more likely to be victims of violence than the general population.
Due to stigma, people are embarrassed to tell others that they have the illness or that someone in their family is affected. This leads to feelings of shame, humiliation, and isolation that prevent people from seeking treatment when they need it and makes it more difficult to cope. A study of mental illness in the United Kingdom found that one out of eight people wouldn’t want to live next to someone with a mental illness. Even treatment providers fall into the trap of forgetting to see their patients as people first, rather than faceless victims of a disease.
Discrimination and stigma restricts the choices that people can make. If your loved one has been diagnosed or you know someone with schizophrenia, become a stigma-buster and help educate others. The latter part of this chapter provides some suggestions of concrete actions you can take within your own community. In addition, NAMI has a StigmaBuster network, comprised of volunteers who help spot inaccurate media portrayals of mental illness and bring them to the attention of those responsible for perpetuating these inaccuracies on TV, in film, and in print. (To get involved, go to www. nami.org, and under “Take Action,” click on “Fight Stigma.”) Also, the federal SAMHSA Resource Center to Promote Acceptance, Dignity and Social Inclusion Associated with Mental Health (www.stopstigma.samhsa.gov) offers information and resources to help you understand stigma and its destructive effects on people with schizophrenia.
You can also do simple things to help reduce stigma for your loved one and others. Avoid the use of offensive terms like crazy, loony, wacko, or nuts. Use people-first language (see Chapter 12). Starting with yourself and your loved one, make it your personal mission to educate everyone around you that schizophrenia is a serious but treatable, no-fault, equal-opportunity, brain disorder.
Not having enough friends
People with schizophrenia need warmth and companionship like everyone else. If someone told you that he had a chronic health problem like cancer, you would react by offering him compassion and support. This usually isn’t the case when friends, employers, and even some families find out about someone having schizophrenia. Disclosing the illness too often creates distance from once-friends, leading to an overwhelming sense of loneliness. For this reason, only about half of those surveyed by NAMI said they would tell someone if they were diagnosed with the disorder. Imagine living with that secret and being unable to share it with more than a few people, if any.
Ongoing companionship and support from family, friends, and the community are essential ingredients to recovery. Consumer-, peer-, and family-run programs can be instrumental in helping people learn to live and cope with schizophrenia — and also in recognizing that they aren’t alone (see Chapter 9).
To help your loved one get the support he needs, encourage him to join self-help and peer support groups in your community (see Chapter 8). And make sure you’re also getting the support you need as a caregiver by joining NAMI and actively engaging in your own life.
A Call to Action
You may feel so overwhelmed by your own situation at that moment that you feel like you can barely stay afloat. But by working collectively, and doing what you can when you can, you can change the face of treatments, services, and supports for people with schizophrenia. Take heart in knowing that NAMI and many other national organizations and concerned citizens take this task seriously. There is a citizen army working on your behalf!
There will be a time when you’ll be able to rise up and have the energy to advocate for yourself, your loved one, and others. You’ll be able to give back what you’ve gotten from others.
Here are some of the basic rules of individual advocacy:
Be voracious in your quest for knowledge and information. Get your facts straight by harnessing and taking advantage of all the information available through people, topics, and the Internet to increase your knowledge about schizophrenia and the resources available in your community.
Join NAMI and other consumer and family advocacy groups at the national, state, and local levels. Members of these organizations are like an underground railroad of people who know how to work the system. They know the programs and the players and, most important, they understand what you’re going through.
Make your voice heard. Ask questions. If you have concerns about treatment or care, or a policy or legal problem affecting you or a relative, start at the bottom and move up the ladder. Let people know from the outset that you’re informed, interested, and part of a larger group — you aren’t part of the problem, you’re part of the solution!
Whenever you communicate or advocate, put your best foot forward.
Stay calm even if you’re angry, hurt, or disappointed. Be persistent yet firm — and listen. Use praise, diplomacy, and humor to get your way.
Don’t sweat the small stuff. Keep things in perspective, keep your eye on the big picture, and never give up.
Take care of yourself and live your life. Undeniably, no one would wish for any type of mental or physical disorder, including schizophrenia, but you can’t allow it to bring anyone’s life to a halt — including your own. There are too many reasons for hope.
Whether you’re only able to attend a NAMI meeting, write a letter to your local legislator, volunteer at a program, leave NAMI brochures in a doctor’s waiting room, or make a phone call of support to another family member, with a little help and advocacy from everyday people like you, people with schizophrenia will be able to achieve the goals all of us share: living a meaningful existence with a sense of purpose, joy, and promise for the future.
