Defying Mental Illness: Finding Recovery with Community Resources and Family Support
By Paul Komarek and Andrea Schroer
Copyright 2011 Paul Komarek and Andrea Schroer
Published by Church Basement Press at Smashwords
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A Note on Sources
Material from You Are Not Alone: NAMI Ohio Family and Consumer Resource Guide is used by permission of NAMI Ohio. If we have failed to identify a source, please contact us so we can credit the author properly in future editions of this publication.
Important Disclaimer
This book is intended for general educational purposes only. It does not substitute for individual medical advice from your doctor or legal advice from your lawyer. Please consult your doctor or lawyer for advice on your individual situation.
Child and Adolescent Mental Health
Involuntary Hospitalization, Guardianship and Alternatives
TOPIC LIST
Struggle and hope, not surrender.
DEFYING MENTAL ILLNESS.
Coming to terms with mental illness. Finding allies. Confronting the challenge of stigma. Creating a path to recovery.
FACTS ABOUT MENTAL ILLNESS
Common features. Schizophrenia. Mood disorders. Bipolar disorder (manic-depressive illness). Major depression. Schizoaffective disorder. Anxiety disorders. Panic disorder. Post-traumatic stress disorder. Obsessive-compulsive disorder. Borderline personality disorder. Substance abuse and mental illness.
CHILD AND ADOLESCENT MENTAL HEALTH
Improving behavior. Childhood behavioral health evaluations. Mood disorders. Anxiety disorders. Thought disorders. Developmental disabilities. Intellectual disability. Autism spectrum disorders. Pervasive development disorder. Tourette syndrome. Learning disabilities. Fetal alcohol syndrome and fetal alcohol effects. Special education. Treatment and medication for children.
HOW TREATMENT WORKS
Conversation as therapy. Treatment with medication. First-generation antipsychotic medications. Atypical antipsychotic medications. Antidepressant medications. Mood stabilizers. Stimulant medications. Medication notes.
CRISIS, VIOLENCE, SUICIDE
Planning for safety. Responding to a person in crisis. Risk of violence. Suicide prevention.
FINDING TREATMENT
Primary care physicians. Emergency rooms. Psychologists and psychiatrists. Managed care. Department of Veteran's Affairs (VA). Community mental health system. Peer services. Assertive community treatment.
PAYING FOR MENTAL HEALTH CARE
Private health insurance coverage. Medicaid. Medicare.
HOUSING
Market based and subsidized housing in the community. Homeless assistance programs. Treatment settings. Hospitals. Residential treatment. Group homes (adult care facilities).
EMPLOYMENT AND DISABILITY
Maintaining employment. Vocational rehabilitation. Disability benefits. Supplemental Security Income (SSI). Application process and appeals. Representative payees. Returning to work. Wills and estate planning. Planned Lifetime Assistance Network.
INVOLUNTARY HOSPITALIZATION, GUARDIANSHIP AND ALTERNATIVES
Involuntary hospitalization criteria. Court process. Guardianship. Rights taken away in guardianship. Guardianship process. Alternatives to guardianship. Advance directives.
CRIMINAL JUSTICE SYSTEM
Assisting a person who has been arrested. Jail conditions. Diversion programs. Re-entry.
ALLIES AND ADVOCACY
Support groups. Community organizations. Advocacy. Complaints and grievances. Legislative advocacy.
PLANNING FOR SUCCESS
Strategic planning. Working from strengths. Creating a vision of the future.
BIBLIOGRAPHY
ABOUT THE AUTHORS
INTRODUCTION
Mental illness means a struggle, whether it is your own illness, a friend's illness or a family member's illness. But there is a real basis for hope. People with mental illness can and do recover from these disorders. Symptoms can be reduced or completely eliminated. Even when symptoms persist, people can rebuild their capacity to live meaningfully, to work, and to help others.
No one should minimize the challenges of mental illness. Like many other severe and chronic disorders, mental illness devastates people with symptoms, and blasts family, friends and co-workers too. Mental illness causes puzzling episodes of troublesome behavior. Financial problems, career disruption, conflict at school, and involvement with the criminal justice system may follow. But surrendering to mental illness can be tragic, even fatal.
This book relies on insights gained through the authors' own experience, and from a variety of sources we trust. We are teachers, not medical people. We have worked in social service agencies. We've seen the need for a book that is not too technical, and suitable for community outreach work.
The authors know many people who have made it through the struggle with mental illness, and many family members and professionals who have supported people with difficult conditions. They have come to terms with mental illness, faced every kind of disorder, and dealt with every kind of treatment. They have rebuilt lives, repaired family relationships and achieved meaningful success.
You can accomplish this too.
DEFYING MENTAL ILLNESS
Mental illness brings such chaos. People lose energy, lose connection with reality, or self-destruct. Family life is shattered. When mental illness hits the news, the news is mostly tragic.
Reckoning with mental illness, facing up to the challenge, requires powerful strategies. The author John Carmody has identified what he calls the universal human toolkit for handling trouble. Carmody suggests five techniques: thinking, feeling, sharing, determination and prayer. Many people who have experienced mental illness or who have cared for a friend or relative have used these tools to find consolation and a way to move forward.
Defying Mental Illness focuses more on the nuts and bolts. We suggest five strategies.
Learn about what you are facing.
Find allies to support you.
Find resources to work with.
Plan both near-term and long-term.
Follow your plan.
Choose techniques that respect people, build on strengths, and increase independence. The plans you make should always include meaningful human connection, as well as medical and legal advice from professionals you trust. Ask your allies about the potential risks and benefits of the steps you include in your plan. Reach out to groups like NAMI (the National Alliance on Mental Illness) and Mental Health America (formerly called the Mental Health Association) for support, education and advocacy. Their members are familiar with the struggle.
Expect to encounter conflict and uncertainty as you gather information. The subject matter is extremely complex. Find your path by focusing on issues that are most relevant to your own experience.
CONFRONTING THE CHALLENGE OF STIGMA
Stigma surrounds mental illness, and taints most everything connected with it. Advocacy groups and people with mental illness have been working to wipe out this stigma for decades. Progress is slow.
Stigma is grounded in fear. Author Pete Earley describes the cruel mechanics of stigma in his 2006 book Crazy, which examines how police, courts and jails deal with people with mental illness.
We lock up the mentally ill because they terrify us. We are afraid of them and even more frightened of what they symbolize. We want to believe they did something that caused their insanity. That is why we can justify housing them in inhumane conditions and punishing rather than treating them. The federal government says mental illness is a chemical imbalance, and because of that it's a sickness and not something... that anyone seeks or wants or deserves to get any more than he seeks, wants, or deserves to get a cold.
But deep down, we really don't want to believe that's true. Because if we did, we would have to admit: It could happen to us. It could happen to me... And that is such a frightening thought that we quietly search for explanations to prove that the mentally ill aren't like us and they somehow deserve the torment they suffer.
The stigma of mental illness, together with the devastating effects these illnesses can have on people's lives, also makes for conflict and controversy. Passions run high because the stakes can be so high.
Reciting brain facts to indifferent audiences will not end stigma. Mental illness stigma persists even after decades of well-meant educational campaigns. A better path may lie with person-to-person connections, and disclosure. Whether to disclose a history of mental illness is always a tough choice, but the experience of Betty Ford and others in eliminating the former stigma surrounding breast cancer offers hope that wiping out the stigma of mental illness is possible.
CREATING A PATH TO RECOVERY
Successfully dealing with mental illness takes the right treatment, self-will/self-monitoring, community support or case management, vocational activity (including school), spirituality, and rediscovery and reconstruction of a sense of self.
We have all experienced recovery from a minor infection or an injury like a cut or sprain - but we also recognize that recovery from conditions like diabetes, asthma or arthritis is different. These are chronic illnesses, with symptoms that persist or flare up from time to time. Treatment might be essential, even if unpleasant. Chronic symptoms bring on fatigue or interfere with the tasks of daily life. All of us know people who accomplish important things despite the symptoms of their illness. We admire their courage, their character and heart.
In the 1980s, a group of writers with mental illness began using the word recovery to describe their experience of coping with symptoms, getting the care they need, and regaining control of their lives. They described recovery as a process, an outlook, a vision, a guiding principle. Their main message was that hope is justified, that restoration of a meaningful life is possible, even with a mental illness.
You should expect to notice some tension between the medical model and this recovery model. The medical model focuses more on symptom relief, while the recovery model focuses on restoring self-esteem and identity. The recovery model puts more emphasis on what a person can achieve despite the persistence of symptoms. Even with these differences, there is a great deal of common ground. Reducing the symptoms of mental illness may be exactly what is needed to make progress possible.
Recovery is a process of building a person's capacity, empowering the person to overcome the effects of the illness. Every person has a range of talents and abilities, a variety of vulnerabilities, a certain capacity to withstand stress, and a certain risk of causing harm when something goes wrong.
Ask four questions to help build recovery.
What helps you make the most of your talents?
How can you reduce the areas where you are vulnerable?
How can you improve your ability to cope with stress?
How can you deal with the risk of something going wrong?
The answers will inform critical choices about treatment, medication, overall health, career, housing, and family relationships.
SUPPORTING RECOVERY
Preserve family solidarity. Every family member reckons with the direct or indirect effects of the illness and deserves love and comfort. Keep communication going. Make sure people know their concerns are being heard. Talk about the struggle in inclusive terms. Plan together. Choose to identify strengths instead of assigning blame. Learn ways to safely handle conflict.
Recognize when symptoms are building up. Therapy helps people identify triggers and warning signs. Family and friends notice these patterns too. Create a game plan that addresses the buildup, the acute phase and the aftermath. Add strategies that relieve stress and help reduce symptoms. Write down when to call the doctor. Use the plan as a frame of reference when discussing events as they unfold. Discuss what happened and adjust the plan once a situation resolves.
Learn all you can about the illness. When using the Internet, look for sources that represent a mainstream consensus-based approach. Distinguish between the search for information and the experience of online socialization. Be wary of websites that push a certain product, and equally wary of websites that tell that you no product ever works. Do your research when things are going well. Don't wait for a crisis.
Make informed decisions about stopping medication. Always rely on medical advice. A single person's feelings that a mental health condition is cured should probably not be trusted. If medication is hard to tolerate, call the doctor. If the doctor will not respond to these concerns, consider changing doctors.
Learn how to recognize a person's capacity to function at the present moment. People benefit when they can act independently. A degree of support may sometimes allow a person to maintain control and achieve what they consider important. On the other hand, when the person is experiencing greater capacity, the same supports can restrict freedom and frustrate progress.
One function of an ally is to help with reality testing. If someone is describing an ongoing hallucination, point out simply that you are not experiencing the hallucination. Do not pretend to believe or agree with delusional thinking. Respond to the emotional content (frustration, fear, anxiety). Memory loss or inability to concentrate can be extremely frustrating and frightening. Do not insist that the person with symptoms try harder to concentrate. Instead, find a place with fewer distractions. Repeat information calmly, in a nonjudgmental way.
Everyday tasks take longer when people lose capacity under stress. Build more time into daily routines. Do not rush. Do not demand that a person with mental illness "pull himself together." Not being able to do this is part of the illness. Do not expect and insist that all peculiar behaviors be corrected at once. Focus on what is accomplished, not on what is not accomplished.
EXPECT TO RECOVER ONE DAY AT A TIME
Garth House describes his journey towards recovery.
Two and a half years ago, when I was recovering from a very devastating and negative relapse that included hospitalization, I can remember how fleeting and brief were the periods of relief from depression and from an eclipse of peace of mind that was almost complete.
How precious these few moments of relief were to me; how valued just for a few moments of inner peace. They always came as a surprise, perhaps when I was washing dishes after a meal, or climbing the fire escape to my apartment when the beauty of the setting sun against the brick and the iron caught my attention and lifted me to a wider perspective that made my suffering seem small and insignificant.
As I slowly recovered from my relapse, I found more and more periods of peace and serenity as I grew in strength and healed from the devastation of my illness. My gratitude for my recovery informed everything. The simplest acts in the workplace became important achievements, and there was no lack of meaning and direction in my life.
I wish I could tell you that the state described above lasted and grew with me as I continued in my recovery. Unfortunately, what began to happen was that I started taking things for granted. I lost my focus on the day at hand, and consequently failed to live one day at a time. The joy and satisfaction I took from every action performed in the course of a day slowly faded away, and I began to place upon myself demands that were not reasonable and expectations that could not be met. As a consequence I began to become depressed. I struggled to find purpose.
I became ungrounded. I longed for those brief moments in my early recovery where everything was reconciled in peace.
Today I understand the importance of staying focused in the present moment. I look upon the work of recovery (at least part of it) to be a conscious, deliberate effort to remain positive and grateful for each moment of the day. It also helps me to remember just how much I have survived in my illness and to congratulate myself for all I have overcome.
It also helps me to realize that the challenge to live life on life's terms comes in three fold form:
First, there is the illness to attend to. As a person with manic-depressive illness, I must understand that depression is a symptom. By naming this for what it is, I rob it of some of its power over me.
Second, reality, by its very nature, is full of ups and downs. There are moments of peace and moments of turmoil. All of us, with or without mental illness, must deal with this aspect of reality.
Third, to perceive the eternal beauty that rests in the present moment requires the discipline of a lifetime and is not come by cheaply. We who have walked the tortuous path of mental illness understand the simplest of beauty and the smallest pocket of serenity. This is both the gift of our illness and its greatest challenge.
FAMILIES LEARN TO COPE
Judy Thomas, a NAMI Ohio board member, discusses her story and her hopes for the future.
When your family member first becomes ill, no matter if it is sudden and traumatic, or it creeps up little by little until it cannot be denied, the world as you have known it will change. What do you do when your family member is diagnosed with a severe, persistent, long-term disease such as schizophrenia, bipolar illness or any one of a myriad of similar diseases?
Feelings and reactions may vary from family to family and individual to individual. Yet guilt, anger, fear, denial, grief and uncertainty as to what to do to help are probably universal to some degree. Grieving is real. You grieve "for the person who used to be," and for all their future promise which may be lost. Moving forward is painful and difficult. You will need to grieve the loss of your own expectations and then move on to support your family member. Finding a way to balance the responsibilities of everyday life with those of care for the ill person will test the fiber of the family unit. But families do learn to cope and they do survive. It is done every day-one day at a time.
To elaborate, families may feel a whole range of emotions. Confusion and disorientation. Denial and distancing - expressed as "This can't be happening to me." Guilt based on several misconceptions, including "I should have recognized this sooner," or "I'm the parent, I must be to blame." Fear of the stigma of mental illness. Fear for the safety of the ill person and sometimes for the safety of others. Anger over serious difficulties in trying to get help for the ill person. Anger toward professionals because the family is excluded from treatment decisions. Extreme fatigue caused by trauma of events. And desire to escape from "the nightmare."
You need to give yourself and your family time to process and understand the changes that have occurred. The experiences you have had with other illnesses in the past will be of little help. Educate yourself concerning every aspect of the illness; it will bring you compassion and help to dissipate some of the anger. Find a support system as soon as you possibly can. Your local NAMI group will contain people who share your feelings and are in various stages of experience with mental illness. The NAMI Family-To-Family Program will provide you with education about mental illness, medications, and how to find help. When you are ready I strongly advise you to take this course.
Families have a role and a place in the treatment process. Know that your family member's past medical and personal history and your insights and perspectives are needed, especially in the beginning, when the person is very ill and may not be able to communicate with health professionals. Treatment and rehabilitation services are provided in the community, but there are major gaps in the mental health system. People depend on family and friends for help and support. It takes determination to battle mental illness - a new life must be built-new structures for daily living developed.
A supportive and caring family helps in the recovery process, but, at the same time, you must care for yourself. Maintain your independent life and identity and resist becoming consumed by the illness. Continue to develop your own interests.
Always hope for healing. The medications do work and new ones are being developed all the time. Brain research and development of new medications without the difficult side effects of older drugs will change the face of mental illness in the future, so never lose hope.
FACTS ABOUT MENTAL ILLNESS
Mental illness has a significant impact on the United States economy and on the nation's overall health. Mental illness is at the root of many issues encountered in the criminal justice system. It connects to poverty, homelessness, substance abuse and sometimes contributes to violence.
Mental disorders are the leading cause of disability in North America. Four of the ten leading causes of disability in the U.S. and other developed countries are mental disorders. Mental illness is at the root of 90 percent of the nearly 35,000 suicides every year in the United States. Suicide is the third leading cause of death among young people aged 15-24. The disease burden of mental illness, including suicide, is second only to cardiovascular disease. Cancer is third.
The economic impact of not treating mental illness is greater than the cost of treatment. Employers are directly affected by the cost of untreated mental illnesses - lost productivity, absenteeism and increased medical expenses.
The treatment success rate for mental illness can be up to 80 percent. One in 10 Americans experiences a mental health disorder serious enough to affect work, school or family life every year. Less than half get help.
COMMON FEATURES
Mental illnesses are brain disorders that cause severe disturbances in thinking, feeling, and relating, as well as difficulty coping with the ordinary demands of life. Symptoms vary. Each person's experience is different. People with mental illness all experience at least some of the thoughts, feelings, and behaviors listed in the catalog of typical symptoms and behaviors that appears below.
Everyone experiences a fair number of these symptoms over the course of their life. But mental illness involves behavior, thoughts or feelings that go far beyond the normal range of experience. Mental illnesses are disabling, distressing, and persist for substantial periods of time. A single symptom or isolated event is not usually a sign of mental illness. Multiple, severe or sustained symptoms that interfere with the ordinary processes of life do need to be addressed.
Authors John Ratey and Catherine Johnson compare mental illness to persistent unacceptable levels of mental noise.
While most of us will never hear voices, all of us have had the experience of being blasted by sounds and stimuli we cannot block out. We know how disorienting noise can be. We even have an expression for how we feel when the world is too loud: We say we "can't hear ourselves think."
The symptoms of mental illness come and go in cycles, and vary in severity from time to time. The duration of an episode also varies. Some people are affected for a few weeks or months while others experience the illness for many years or for a lifetime. There may be no reliable way to predict the course of the illness. Symptoms may change from year to year, and differ from person to person even with the same diagnosis or the same medicine. Many people have combinations of problems (called co-occurring disorders) that interact in complex ways.
CATALOG OF TYPICAL SYMPTOMS AND BEHAVIORS
CHANGES IN THINKING OR PERCEIVING
Hallucinations
Delusions
Excessive fears or suspiciousness
Inability to concentrate
CHANGES IN MOOD
Sadness coming out of nowhere, unrelated to events or circumstances
Extreme excitement or euphoria
Pessimism, perceiving the world as gray and lifeless
Expressions of hopelessness
Loss of interest in once pleasurable activities
Thinking or talking about suicide
CHANGES IN BEHAVIOR
Sitting and doing nothing
Friendlessness
Abnormal self-involvement
Dropping out of activities
Decline in academic or athletic performance
Hostility, from one formerly pleasant and friendly
Indifference, even in highly important situations
Inability to express joy
Inappropriate laughter
Inability to concentrate or cope with minor problems
Irrational statements
Peculiar use of words or language structure
Involvement in automobile accidents
Drug or alcohol abuse
Forgetfulness and loss of valuable possessions
Attempts to escape through geographic change
Frequent moves or hitchhiking trips
Bizarre behavior (skipping, staring, strange posturing)
Unusual sensitivity to noises, light, clothing
PHYSICAL CHANGES
Hyperactivity or inactivity (sometimes alternating)
Deterioration in hygiene or personal care
Unexplained weight gain or loss
Sleeping too much or being unable to sleep
REACHING A DIAGNOSIS
A thorough physical examination is usually the first step in figuring out what is wrong. Diseases such as hypothyroidism, multiple sclerosis, or a brain tumor can cause many symptoms that look like mental illness.
Because the brain is so complex, and because mental illness is expressed through behavior, diagnosing mental illness is not easy. The diagnosis process involves comparing descriptions of behavior and feelings to listings in a catalog of disorders called the DSM (Diagnostic and Statistical Manual). Physical measurements like blood tests seldom reveal quick answers. People seeking help are engaged in conversation and asked a series of questions. Information from relatives, friends and employers about the person's behavior also helps with the diagnosis process.
The DSM itself is revised periodically. It is not unusual for a person's stated diagnostic label to change over time.
SCHIZOPHRENIA
People with schizophrenia have a disorder of the brain that affects mental processes such as thinking and judgment, sensory perception, and the ability to appropriately interpret and respond to situations or stimuli. Schizophrenia does not mean that someone has more than one distinct personality. Although the word schizophrenia does come from a Greek term meaning "splitting of the mind," the notion that someone with schizophrenia has a "split personality" or "dual personality" is incorrect.
People with schizophrenia have "positive symptoms" (hallucinations or delusions), "negative symptoms" (apathy, loss of connection to other people), and cognitive symptoms (thought processing problems). Hallucinations involve hearing, feeling, or seeing things that exist only in the mind of the individual. Delusions are persistent false beliefs. Psychosis means that severe hallucinations or delusions are disconnecting the person from the common experience of reality. People with schizophrenia experience suspiciousness, withdrawal, communication difficulties, and drastic changes in behavior and personality.
People with schizophrenia discern meaning from experiences that reflect both ordinary reality and their hallucinations or delusions. This can result in poor insight, the inability to recognize that one is ill, an especially difficult symptom. Poor insight may persist even when other symptoms such as hallucinations and delusions respond to treatment. This lack of insight is more extreme than the type of resistance or denial we all experience when something in our lives might need attention or change.