In This Chapter
Understanding how schizophrenia is diagnosed
Recognizing different subtypes of schizophrenia
Differentiating between schizophrenia and other possible diagnoses
Searching for a second opinion
Coming to terms with the diagnosis of schizophrenia
Whether you’ve long suspected that something was wrong or you were blindsided by symptoms that appeared all of a sudden, now the symptoms that worried you finally have a name. This situation is probably somewhat reassuring but it will also raise many questions.
After a loved one is diagnosed with schizophrenia, you want to know more about how the diagnosis was made, how the symptoms of schizophrenia differ from other mental illnesses, and why the disorder is often confused with other health conditions. We wrote this chapter to answer those questions and to give you a glimpse of your loved one’s prospects for the future. We also provide some advice on how to adjust to a diagnosis that no one is prepared to hear, and let you know how and when to get a second opinion.
Understanding How Diagnoses Are Made
When you’re dealing with any type of disease, one of the first things you want from your doctor — besides getting a prescription to fix the problem — is a diagnosis. Being able to put a name to a set of symptoms helps people understand, accept, and deal with their disorder. At the same time, you may wonder how the doctor arrived at this diagnosis: How does he know it’s schizophrenia and not another type of mental disorder?
The next sections describe how doctors obtain information to make a diagnosis, what differentiates schizophrenia from other illnesses, and why people diagnosed with schizophrenia can have such varying symptoms.
Diagnosis: Giving a name to a set of symptoms
Just the word diagnosis can sound frightening and clinical. However, diagnoses are nothing more than the names given to various physical and mental disorders or diseases. A diagnosis is a generalization that describes what the average person with that disorder or disease experiences, and what can be expected in the future based on criteria that are periodically revised by the medical community.
The value of a diagnosis is that it provides a shorthand way of communicating important information about a medical condition, such as:
The characteristic symptoms of the disorder
The expected course (how it may vary over time)
The prognosis of the disorder (the outlook for the future)
Most important, options for treatment
With any illness — whether mental or physical — any one individual is unlikely to show all the symptoms and behaviors associated with a diagnosis.
More recently, the term schizophrenia spectrum disorders has come into use to describe the variations in illness that fit under the name of schizophrenia.
Inside the Diagnostic and Statistical Manual: The psychiatric bible
The classification of various mental disorders and the criteria used to make diagnoses are found in a topic called the Diagnostic and Statistical Manual of Mental Disorders, published by the American Psychiatric Association and often referred to simply as the DSM. The DSM is a consensus document, meaning that agreement has been reached by many professionals about what to name a particular disorder that has certain criteria, or characteristics, associated with it. It is used by psychiatrists and other mental-health professionals to make diagnoses.
The current DSM is the fourth edition of this official guide to diagnosis, so this edition is logically called DSM-IV. Editions or revisions come into being about every ten years, and the next edition is not expected before 2010. The
manual is massive (just under 1,000 pages) and includes 16 categories of mental disorders with multiple diagnoses in each category. Schizophrenia is part of the “schizophrenia and other psychotic disorders” category.
Many of the same symptoms can be found in more than one category or disorder, but every diagnosis is based on a pattern of symptoms as well as the history of the illness.
Looking for Schizophrenia
Getting the right diagnosis is as important with mental illness as it is with physical illness, because, in all disease, treatment is determined by diagnosis. A psychiatrist or other mental-health professional makes a diagnosis by determining how closely a patient’s “story” fits the pattern of symptoms that have been identified for the particular disorder.
Differentiating among mental illnesses isn’t always easy, and a diagnosis may change over the course of years or even months. There are several reasons for this:
Different mental illnesses often have overlapping symptoms.
The predominant symptoms may ebb and flow in the same person over time. For example, when hallucinations and delusions are predominant, the person may be diagnosed with schizophrenia; when mood symptoms, like excitability or depression, dominate, the person may be diagnosed as having a mood disorder.
Diagnoses are made using information gleaned through verbal interviews with the patient, observations of his behavior, and, often, interviews with other people in the patient’s life. An accurate diagnosis also requires collecting information about the recent history that led to the current problem, along with the lifetime history of behavioral or emotional problems in the individual and his family. When the individual who’s sick is unable or unwilling to accurately articulate his story, family members or close friends can play a pivotal role by augmenting missing information and providing relevant medical records.
A complete examination includes a physical exam as well as general medical laboratory tests. When available, this information may be obtained from the patient’s general practitioner or internist. Although there is no specific laboratory test to detect schizophrenia, lab tests are used to rule out the possibility of physical disorders whose symptoms mimic those of mental disorders.
When the clinician — most often a psychiatrist (an MD who has special training in mental disorders) or another licensed mental-health professional (see Chapter 5 for more on different types of mental-health professionals) has all this information, the next task is to consider which of the numerous descriptions of mental disorders (diagnoses) best fits the patient’s symptoms, behavior, and history.
The elements of a psychiatric interview
When an individual comes to a clinician’s office for a psychiatric assessment (interview) — either on her own, brought by a family member or friend, or even escorted by law-enforcement authorities — an interview is used for making a diagnosis. We cover the main elements of a psychiatric interview in the following sections.
Determining the reason for the visit
The clinician will ask, “Why are you here?” to determine the person’s problems or symptoms and then will follow up with other similar questions to determine the nature of the person’s problems. Here a few examples of the kinds of questions the clinician may ask:
What symptoms are you experiencing? When did they start? How often do they occur?
Do your symptoms interfere with your school, work, or ability to take care of yourself?
Do you hear voices? If so, what do they say? How often do you drink alcohol? How much? When? ‘ Have you ever used marijuana? Cocaine? Other drugs? Do you ever feel depressed? Do you ever have thoughts of hurting yourself?
Conducting a mental status examination
The clinician will generally conduct a mental status examination, which involves both observation by the clinician and direct questioning to determine the individual’s thought processes, mood, perception, orientation, memory, and so on.
In addition to listening to the person, the clinician will observe the individual’s behavior:
Is he sitting still, or fidgeting and moving around excessively? Does he appear to be distracted by sounds or voices that aren’t there? Does he cry easily? Laugh inappropriately? Change moods on a dime? Is he too talkative or too quiet?
Does he seem impaired by alcohol and/or other drugs?
The clinician is looking for unusual behaviors or signs that are characteristic of a particular disorder.
Getting a good history
Because patients may be forgetful, anxious, or may not be thinking clearly, the clinician (or an assistant) may request the same information about symptoms, history of the problem, and family history from other reliable informants (such as family members or close friends). This information may be requested either during the initial diagnostic interview or at another time.
If you keep a notebook of detailed observations, that can really help your clinician make an accurate and timely diagnosis. (See Chapter 14 for more on keeping track of your loved one’s symptoms and treatments.)
Looking at the criteria for schizophrenia
A pattern of symptoms and behavior over a certain period of time has to be met before the clinician makes a DSM-IV diagnosis of schizophrenia.
The criteria for diagnosing schizophrenia are very specific:
There must be a mixture of certain signs (observable behavior) and symptoms (verbally reported experiences) that are present for a significant portion of time (over a one-month period), with some signs and symptoms present (but not necessarily continuously) for a minimum period of six months.
If the signs and symptoms are present for one month, but less than six months, a formal diagnosis of schizophreniform disorder is made. So between two visits, the diagnosis can change from schizophreniform to schizophrenia, just by virtue of the passage of time, without any change in symptoms.
To make a diagnosis of schizophrenia, certain inclusion criteria (required criteria) and exclusion criteria (disqualifying criteria) need to be met. Two or more of the following must be present for a significant portion of time during a one-month period in order for someone to be diagnosed with schizophrenia:
Delusions: False, fixed beliefs that cannot be dispelled with logic.
Hallucinations: False sensory perceptions, usually auditory, with no basis in reality.
Disorganized speech: Speech that reflects illogical thinking and cognitive impairment.
Grossly disorganized or catatonic behavior: Observable dysfunctional movements or holding fixed immobile positions for long periods of time.
Negative symptoms: For example, too little emotion for a given situation or no desire to carry out meaningful activities (see Chapter 2).
Social and/or occupational dysfunction: The criterion of social and/ or occupational dysfunction must be met, which means the person is unable to function in one or more areas of everyday life (such as self care, work, school, or interpersonal relationships). The person is functioning markedly below the level at which she functioned before becoming ill.
If other symptoms or conditions are present, a diagnosis of schizophrenia cannot be made.
The most common exclusion is substance abuse. A variety of drugs that are often used illicitly — for example, stimulants (such as amphetamines), marijuana, PCP (also known as angel dust), cocaine, and hallucinogenic drugs (such as LSD and psilocybin or mescaline) — cause symptoms that mimic schizophrenia.
Other exclusion criteria are
A history of severe mood swings (elation and/or depression) that would lead to alternative diagnoses of an affective (mood) disorder or schizoaffective disorder
Evidence of a physical disorder — such as hormonal (thyroid or adrenal gland) problems or a tumor that may have spread to the brain and is giving rise to mental symptoms
Co-occurring mental-health and substance-abuse disorders are so common that the possibility of both occurring simultaneously should never be overlooked. Because individuals who are diagnosed with schizophrenia often abuse alcohol, drugs, and/or other substances, accurate diagnosis may be complicated if an individual shows up in an emergency room without the clinician being able to obtain a reliable history. If the symptoms are solely the result of drug intoxication, they will usually disappear in a matter of hours or days. However, drug use sometimes triggers or leads to the onset of what will become a schizophreniform disorder or schizophrenia.
Describing different types of schizophrenia
The DSM-IV recognizes four types of schizophrenia: catatonic, paranoid, disorganized, and undifferentiated. Because these terms are still used in the mental-health profession (and you may hear them from clinicians who are treating your loved one), we define them in the following sections, listing their predominant symptoms.
Frankly, we don’t think these terms are very useful in describing the severity of the illness or in directing treatment. It’s likely that in the next revision of the “bible,” old labels will give way to new ones. Instead of these labels, many clinicians prefer to use the terms positive, negative, and cognitive to describe their patients’ symptoms and approaches to treatment, remediation, rehabilitation, and recovery. (See Chapter 3 for more about positive, negative, and cognitive symptoms associated with schizophrenia.)
Catatonic
The term catatonic refers to abnormal motor activity. The individual may remain frozen in one position for long periods of time. He may display waxy flexibility (allowing himself to be moved) or become rigid and resist being moved, holding the position in which his arms or legs are placed.
Paranoid
The predominant symptoms of paranoia are delusions (fixed, false beliefs) and hallucinations (hearing voices) — although the individual may seem quite ordinary in other areas of functioning. The paranoid-type patient often believes that some group (such as the FBI, communists, or the Nazis) is after her, and she frequently hears voices that threaten, command, or berate her. No amount of reassurance or “proof” will convince her that she isn’t at risk, or that the voices aren’t real and are internal, coming from her brain rather than from the outside environment.
Disorganized
The main feature of disorganized schizophrenia is speech that is very disorganized, illogical, and hard to follow, often accompanied by feelings that are inappropriate or too shallow for what’s being said or discussed. Coherent delusional ideas are not present (in other words, if the person is delusional, you might not even be able to understand the delusion because of the person’s disorganized thinking and speech), and if there are hallucinations, they’re fragmentary and disorganized. The person may be so disorganized that he cannot adequately carry on activities of daily living (such as washing, dressing, and eating).
Undifferentiated
If an individual doesn’t have the characteristics or features of the other three types, she’s classified as undifferentiated. If new symptoms don’t emerge over a long a period of time, this type is sometimes also called the residual type.
The Great Imposters: Ruling Out Other Mental Conditions
To the casual observer, different mental disorders have similar symptoms. The diagnosis of schizophrenia is made primarily comparing an individual’s symptoms to the pattern of symptoms and behaviors characteristically associated with the disorder. However, even mental-health professionals admit that diagnosis is more an art than a physical science, because there are no laboratory tests or diagnostic X-rays that can definitively confirm the diagnosis.
For some physical disorders, health professionals have tools like blood tests and imaging procedures to help make an accurate diagnosis. In mental disorders, reliable diagnoses are achieved by conducting a thorough clinical interview, taking a very good history, and watching the evolution of the illness and sometimes its response to medication. A similar situation occurs in medicine when a patient has abdominal pain, vomiting, diarrhea, and fever and a doctor needs to determine whether it’s due to appendicitis, salmonella food poisoning, or a stomach virus. When the pattern of symptoms isn’t clear cut, it takes a skilled practitioner, a thorough work-up, and time to recognize the difference. Sometimes internists say that an illness needs time “to declare itself.”
Magnetic resonance imaging (MRI) and positron emission tomography (PET) are two brain imaging techniques that allow scientists to visualize the structure or function of the brain in great detail. Although many studies have demonstrated structural differences in the brain between groups of people with or without schizophrenia, the differences are not large enough that they can be used clinically at this point in time to make or confirm diagnoses in any one individual.
In the following sections, we cover some of the disorders that make it challenging to distinguish between two or more disorders or conditions with similar symptoms.
Schizoaffective disorder
Despite the similar sounding names, schizoaffective disorder isn’t a type of schizophrenia. Rather, it’s another diagnosis that falls under the same DSM-IV category, “schizophrenia and other psychotic disorders.”
Many of the symptoms that characterize schizoaffective disorder overlap with those of schizophrenia, and differentiating between the two is often difficult. The big difference is that, in schizoaffective disorder, there has been an uninterrupted period of illness that meets the criteria for a mood disorder (characterized by major depression, mania, or a mixture of the two). This is in addition to, and concurrent with, the symptoms of schizophrenia (such as delusions and hallucinations).
There is an increased risk for suicide in people with schizoaffective disorder (which is often associated with profound depression). Also, appropriate treatment for schizoaffective disorder often requires the use of mood stabilizers (such as lithium) or even antidepressant drugs, as well as antipsychotic medications.
One of the reasons for using medication in any illness is to relieve or reduce symptoms. Regardless of the specific diagnosis, the same medications or combinations of them may be used to treat similar symptoms.
Bipolar disorder
The onset of bipolar disorder (also called manic-depressive disorder), another severe mental disorder, is sometimes quite abrupt, beginning with manic or hypomanic (mildly manic) behavior. Although mental-health professionals used to believe that bipolar disorder occurred only in older people (unlike schizophrenia, which usually begins in a person’s teens or early 20s), it’s now recognized that even children and adolescents can have bipolar disorder.
Mania is characterized by an excess of energy (for example, staying up all night for days at a time without tiring), having grandiose ideas that border on delusions, and, perhaps, even having hallucinations. These symptoms overlap with those seen in sudden-onset schizophrenia, so the diagnoses can easily be confused.
The onset of bipolar disorder can also begin with depressive symptoms, such as a profoundly sad mood, sleeping too much or too little, a lack of interest in anything, the inability to experience pleasure (called anhedonia), and suicidal thoughts. Someone with bipolar disorder can also have delusions, especially of a self-deprecatory type, where the individual believes he’s responsible for many of the ills of the world, or that his body is rotting inside or is riddled with cancer.
A diagnosis of bipolar disorder is made on the basis of at least one episode of both manic and depressive symptoms, not necessarily alternating or in equal numbers. The overlap of symptoms with schizophrenia can initially lead to misdiagnosis, but usually the prominence of the mood symptoms (depression or mania) leads to the correct diagnosis and appropriate treatment. For example, it’s not uncommon over a long period of illness for individuals to be diagnosed sequentially with schizophrenia, schizoaffective disorder, and bipolar disorder if their symptoms change. To learn more about bipolar disorder, see Bipolar Disorder by Candida Fink, MD, and Joe Kraynak.
Because symptoms fluctuate, don’t be surprised if an individual’s diagnosis changes over time. This doesn’t necessarily mean that there has been a diagnostic error. It just means that the pattern of symptoms is different now, so a different diagnosis and treatment are indicated.
Severe depression
Some individuals may become severely depressed (see the preceding section) but never go on to exhibit manic behavior. They may experience repeated episodes of depression with delusions (sometimes called delusional depression) and/or hallucinations.
The person with severe depression shows no interest in things around her and may barely speak. Even if the severity of the episode decreases, the individual may remain aloof, slow-moving, and appear preoccupied. These symptoms can sometimes be confused with the symptoms of schizophrenia.
In severe depression, depressive mood symptoms are more prominent than deficits in thinking. It’s important to differentiate between the two disorders because antidepressant medication is a necessity in treating severe depression, but the use of antipsychotic medication is needed to treat schizophrenia. Less commonly, individuals with either depression or schizophrenia may require both types of medication (see Chapter 8).
Substance use and abuse
The widespread use of so-called street drugs (illegal drugs) can give rise to symptoms and signs that are similar to those seen in schizophrenia. Because drug experimentation frequently begins in someone’s late teens or early 20s, also the peak time when the symptoms of schizophrenia appear, one can be mistaken for the other — at least initially.
Use of stimulant drugs, such as amphetamine or methamphetamine (also known as crystal meth), over a period of time frequently causes extreme paranoid feelings and behaviors. As a result, individuals on these drugs often are brought to a hospital emergency room by law enforcement authorities. Usually, keeping them safe, providing supportive care, and sometimes administering sedative medications relieves the acute paranoid symptoms in hours, and what looked like schizophrenia is diagnosed instead as drug intoxication and acute amphetamine psychosis. Testing for drugs in the person’s blood or urine helps confirm the diagnosis.
A class of drugs known as hallucinogens — that prominently includes marijuana, LSD, and PCP (also known as angel dust) — gives rise to visual distortions and illusions, a sense of loss of control, and, sometimes, disorientation. This can lead to extreme fear, or what is commonly referred to as a “bad trip.” Although this may initially be mistaken for schizophrenia, the symptoms are usually short-lived and soon recognized as a drug-induced phenomenon. However, in some individuals, what starts as a drug-induced bad trip gives way to continued hallucinations, delusions, and inappropriate mood and winds up continuing and being diagnosed as schizophrenia. Scientists still aren’t sure about how or why this occurs.
Use of street drugs or alcohol in individuals known to have schizophrenia frequently leads to an exacerbation or worsening of the symptoms. Chapter 6 provides more information about co-occurring mental-health and substance-use disorders.
Personality disorders closely linked to schizophrenia
There is another totally separate category of disorders in DSM-IV known as personality disorders. Ten specific personality disorder diagnoses are outlined in the manual, but only three of them are closely related to the symptoms of schizophrenia:
Paranoid personality disorder: The personality of someone with this disorder is characterized by a persistent pattern of distrust and suspiciousness with thoughts that other people’s motivations are directed against him.
Schizoid personality disorder: A person with this disorder is distant or detached from ordinary social relationships, and shows very little emotional expression or responsiveness compared to what you would expect in a given situation.
Schizotypal personality disorder: A person with this disorder is uncomfortable with close relationships and has thinking and perceptual difficulties, along with what is seen as eccentric behavior.
One other DSM-IV personality disorder that may be considered during a workup for schizophrenia is borderline personality disorder (BPD), which is characterized by intense instability of relationships, mood, self-image, and self-esteem and is marked by impulsivity. The impulsivity is often characterized by extreme risk-taking behavior, self-mutilating behavior, recurrent suicidal behaviors, and wide swings in loving or hating individuals with whom the individual is involved. The hatred can be so intense at times that it can be considered paranoid.
Such intense and impulsive feelings and actions can cause clinicians to consider a diagnosis of schizophrenia, but the absence of persistent organized delusions and hallucinations and the absence of consistent depressed or manic mood differentiates this personality disorder from schizophrenia and bipolar disorder (see “Bipolar disorder,” earlier in this chapter).
Some clinicians feel BPD fits more closely with the “schizophrenia and other psychotic disorders” and “mood disorders” categories rather than with “personality disorders.”
Personality disorders often begin in early adulthood and remain stable and persistent over the years; they don’t wax and wane. People with personality disorders behave in ways that don’t fit society’s norms, which can lead to their being very distressed and/or somewhat impaired; they don’t, however, suffer the profound disability and loss of function seen in people with schizophrenia.
People recognize that the individual is somewhat eccentric, but they don’t characterize the individual as out of control or out of contact with reality (having hallucinations and delusions).
In general, the presence of clear-cut psychotic symptoms (delusions and hallucinations) is what distinguishes schizophrenia from these personality disorders.
Receiving the Diagnosis of Schizophrenia
Few diagnoses are as initially frightening as schizophrenia. Your fears are understandable; you may remember hearing about people years ago with schizophrenia who were placed in custodial care and never seen or talked about again, or you may recall sensational news stories of people with homicidal tendencies or multiple personalities. Many people today don’t realize that these news reports are generally overblown and that schizophrenia is a treatable illness. Moreover, the disorder often goes into remission, and its symptoms can often be controlled by medication.
If your child is diagnosed with schizophrenia, you may blame yourself and wonder what you did wrong. Was it your genetics, your parenting, or both? Along with guilt, you may feel angry, ashamed, or terrified about the future. You wonder whether your son or daughter will ever be able to work, marry, or have children.
Some families compare being diagnosed with schizophrenia to being diagnosed with a potentially fatal illness, like cancer or heart failure — and in many if not most cases, the diagnosis is more difficult to deal with, because society is less accepting and sympathetic toward mental disorders than physical conditions. Many times, families have told us they were in shock in the doctor’s office and came home and cried.
Doctors don’t always deliver the diagnosis of schizophrenia well or easily. They may be slow to put a name to it, waiting to be more certain before delivering what they consider “bad news” — many disorders (such as
bipolar disorder, personality disorders, substance abuse, depressions, or schizoaffective disorder) look alike when they’re assessed within the confines of an appointment that often only lasts 50 minutes. Other times, patients don’t fully reveal their symptoms to their doctor and appear to be far more organized and lucid than they normally are outside his office.
Families can be guilty of contributing to confusion of diagnosis. They may ignore, overlook, or minimize symptoms that are right before their eyes. This can result in long delays before diagnosis. Many patients and families are afraid of hospitalization, having to take medication for the rest of their lives, or being labeled with a stigmatizing illness, so they actively avoid seeking professional help.
Ignoring or minimizing these symptoms will not help them go away. All you’re doing is prolonging the time before your loved one gets the help she needs.
Trust your instincts. Even if pediatricians, teachers, or internists tell you that your adolescent or young adult will grow out of the problem, if you feel something is very wrong, be sure to see a specialist to get a diagnosis. The earlier you identify and intervene in schizophrenia, the better the chances of reducing impairment and disability.
People react to an initial diagnosis of schizophrenia in a range of different ways. The following sections describe the difficulties people typically encounter in moving past denial to a state of acceptance.
Accepting the diagnosis
Because of the myths and misunderstandings associated with mental illnesses, in general, and schizophrenia in particular (see Chapter 1) — as well as the uncertain course that schizophrenia may take — an initial diagnosis is often met with fear, denial, disappointment, and guilt. This occurs almost universally even though the individual or his family may have been aware that “something was very wrong” for some time. Acceptance is a process that doesn’t take place overnight.
Attaching a name to an illness is one of the first steps that enables people to move forward, to learn more about the disorder, to seek help, and to find support from other patients and families (see Chapter 17). A diagnosis gives them a shorthand way to talk about the disorder and communicate with mental health professionals who are in a position to help.
In the best of circumstances, acceptance allows a patient and his family to learn everything they possibly can about schizophrenia; find the very best experts to help them; and surround themselves with people who care, understand, and accept them.
Because of their extensive experience in dealing with large numbers of people, the clergy, particularly those members trained in pastoral counseling, can play an important role as natural supports to help families come to grips with the diagnosis. Clergy can also help you find understanding professionals in the community and provide support for the person with schizophrenia.
Denying the diagnosis
Although acceptance is the best way to move forward in any difficult situation, denial can be a formidable roadblock. Initial denial is a typical reaction to any life-changing event. When denial becomes a permanent coping mechanism for dealing with a chronic illness such as schizophrenia, however, crucial time can be lost before treatment begins.
Some patients and families are in such denial that they go doctor shopping to get a more palatable diagnosis. One family we know went to four different doctors and wound up with four different diagnoses; this gave them the ammunition they needed to rationalize that doctors don’t know anything anyway. (In reality, each of the doctors observed similar symptoms and signs in the patient, but in different proportions, at different points in time — and each of them suggested similar classes of medications.)
We’ve also met families who were so upset by a diagnosis of schizophrenia that they begged the doctor to change it. In this situation, many doctors comply and change the diagnosis to one that is more socially acceptable (such as depression or bipolar disorder). This strategy can backfire, undermining treatment and the patient’s own acceptance of and/or understanding of her illness.
A diagnosis doesn’t change who your loved one is. Just as a person who is diagnosed with cancer is not solely defined as a cancer patient, a person diagnosed with schizophrenia is more than her diagnosis. It’s sometimes easy to forget this when you’re in the throes of a crisis.
From time to time, schizophrenia is misdiagnosed. This is more likely when a doctor has limited understanding of and experience with serious mental disorders — for example, someone who tends to see the worried well (people who are high functioning but with relatively minor problems) or when a patient is seen during a first break (the first time a person is psychotic and out-of-contact with reality) and there’s little history to rely upon.
Others times, lack of acceptance is manifest by patients’ and families’ refusal to accept evidence-based treatments (treatments that have a scientific basis). Instead, they search for unproven treatments, thinking that changes in diet or the addition of vitamin supplements can restore mental equilibrium, while symptoms persist. This can delay treatment and, in some cases, it may even increase losses and worsen the course of the disease.
Lack of insight on the part of the patient can also be a formidable barrier to treatment. For more information on denial, turn to Chapter 6.
Predicting the Course of the Illness
When an individual is first diagnosed with schizophrenia (sometimes referred to as the first break), it’s natural to wonder if it will go away or last forever, and whether the symptoms will become more severe or dissipate over time. Unfortunately, for any particular individual, there are no definitive answers.
The most common course and outcome for people with schizophrenia is that it’s variable, with exacerbations (worsening of symptoms) and remissions (periods of relative wellness with minimal symptoms). Some individuals only have a single psychotic break (sometimes called a nervous breakdown) and then never have another clear episode. Other people continue to have symptoms, which may either remain stable or deteriorate over time.
Although doctors can’t accurately predict the extent to which your loved one will improve, stay the same, or get worse, they can make generalizations about the progression of the disorder.
Keep in mind, though, that these are generalizations, and may not apply in your situation. In addition, even individuals with the most severe variants of the illness can live productive lives with the help of medication and other supports.
Factors that predict a better course
Certain people are more likely to have only a single episode, or to remain stable for long periods of time. Some factors that tend to predict a better course and outcome include the following:
Female gender
Presence of a precipitating event (for example, a stressor, such as the death of a parent, which precipitated the break)
Predominance of mood symptoms (for example, depression) over psychotic symptoms
Insight into and understanding of the illness
Good adherence to medication
No prior family history of schizophrenia
Predictors of poorer outcomes
Although everyone hopes for improvement or at least stabilization, the symptoms of some individuals don’t improve or may even worsen over time. The following factors can point toward a more severe course and outcome:
Individuals with an earlier age of onset Poorer adjustment prior to diagnosis Lower educational achievement More negative and cognitive impairments
Seeking a Second Opinion
If you have any nagging concerns about diagnosis or treatment, don’t hesitate to get a second opinion. Many people feel embarrassed about seeking another opinion because they’re worried that they’ll offend their current doctor. If you’re of that mindset, change your way of thinking — because doctors are changing theirs. Most doctors aren’t insulted when a patient with a complex problem wants to seek a second opinion. In fact, many doctors welcome another professional’s perspective — two heads are better than one! — and choosing healthcare providers who encourage you to seek out additional information, including information from other doctors, is wise.
When to get a second opinion
Not every situation calls for a second opinion — when diagnoses and treatment choices are relatively straightforward, a second opinion usually isn’t necessary. Second opinions add expense to your medical bills and can be time-consuming. However, they’re clearly in order under certain circumstances:
If the diagnosis or course of treatment is unclear or ambiguous
If the patient wants to take advantage of experimental or additional treatment options that are only available elsewhere
If a patient or her family has doubts or concerns about a doctor, or questions about the illness or its treatment that the doctor hasn’t answered satisfactorily
If a patient shows no signs of improvement
If a patient or his family simply thinks it may be useful for someone else to take a look at the case with fresh eyes
Even if the second opinion doesn’t shed new light on an old problem, it may help buy peace of mind.
How to find a second opinion
There are a number of options for finding a psychiatrist for a consultation:
Ask your own psychiatrist or internist for a reference.
Check with your local hospital or an academic medical center to find someone with the expertise you require.
Check lists of “best doctors” in regional magazines.
Seek the names of good physicians from family and friends, or from people who have had a similar illness.
Check with your local NAMI affiliate to see if it maintains a list of practitioners (To find your local affiliate, go to www.nami.org/ Template.cfm?section=your_local_NAMI — or go to www. nami.org and, under the “Find Support” section click on “State & Local NAMIs.”) or contact one of the other organizations listed in the appendix.
Going for a second opinion
When you decide to go for a second opinion, be sure to tell your current doctor that you’re doing so. Your current doctor probably will need to provide the second doctor with information. Here’s how to do this:
Respectfully explain your rationale for getting a second opinion, without directly challenging your current doctor.
Explain that you’ll be asking the other doctor to speak with him, to solicit his opinion, and see if they can come up with any alternative diagnoses or treatments, as the case may be.
Leave the door open to returning because, in all likelihood, that’s probably what you’ll want to do.
Depending on the type of insurance you have, some insurers reimburse the cost of a second opinion, but it’s always a good idea to check in advance with your insurance provider.
If you’re uncertain about your relationship with your doctor, her reaction to your seeking a second opinion may actually help you decide whether to stay or leave. Client-centered, confident doctors don’t resent second opinions, and may even suggest it to you.
