Schizophrenia
Schizophrenia: Youth's Greatest Disabler
SchizophreniaSchizophrenia: Youth's Greatest Disabler |
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Dear Reader, If you want to learn some basic facts about schizophrenia, we hope you will find this booklet useful. Please remember -- the text is meant only as an introduction, and should not be used as a diagnostic tool. Most of the information in the booklet comes from other books, articles, and people's personal experience. If you need to know more about schizophrenia, you should talk to your doctor or to a mental health professional. Please note: You are welcome to reproduce this information in quantity, provided it is required for bona fide educational purposes. We would like to hear your comments about how useful you found this booklet -- or any ideas you might have for future improvements. You can contact us at: British Columbia Schizophrenia Society
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“Not only victims but also families and friends are affected by schizophrenia, each in different ways. Their sufferings are immeasurable, as are the social and financial costs to communities at large.”-- Seeman, Littman, et al.
SCHIZ-O-PHRE-NI-A, n. Any of a group of psychotic reactions characterized by withdrawal from reality with highly variable affective, behavioral and intellectual disturbances.No definition of schizophrenia can adequately describe all people with this illness. Schizophrenia appears to be extremely complex.-- American Heritage Dictionary Schizophrenia is a syndrome (group of symptoms) characterized by delusions, by hallucinations, by disturbances in thinking and communication, and by deteriorating social functioning.
-- Edward Sachar, MD. The talent submerged, the promise broken, the future lost, the life taken. This is schizophrenia. Aimless, hopeless, wandering, waiting ... waiting for the brain to reconnect.
-- Trish Van Devere, actress
What is clear is that schizophrenia is a disease that makes it difficult for the person with the illness to decide what is real and what is not real.
It is also clear that this brain disease affects normal, intelligent people in all walks of life.
Given proper support, many people with schizophrenia can learn how to deal with their symptoms, and lead reasonably comfortable and productive lives.
SCHIZOPHRENIA IS:
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“We do not yet understand precisely the cause or the causes of schizophrenia, although research is progressing rapidly.”Researchers now agree that, while we do not yet know what "causes" schizophrenia, many pieces of the puzzle are becoming clearer. Areas of study and interest are:- Seeman, Littmann, et al.
Schizophrenia occurs in 1% of the general population. If you have one grandparent with schizophrenia, your risk of getting the illness increases to about 3%; one parent with schizophrenia, to about 10%. When both parents have schizophrenia, the risk percentage rises to approximately 40%.
Some people do improve while taking vitamins. However, this can be due to concurrent use of antipsychotic medication, or to the overall therapeutic effect of a good diet, vitamin and medication regime. Or-these individuals may be part of that group who will recover no matter what treatment is used.
SCHIZOPHRENIA IS:
“I just couldn't accept the fact that he had an above average I.Q., was good looking, had a good personality-and was so ill.”Just as other diseases have signs or symptoms, so does schizophrenia. Symptoms are not identical for everyone. Some people may have only one episode of schizophrenia in their lifetime. Others may have recurring episodes, but lead relatively normal lives in between. Others may have severe symptoms for a lifetime.-- Parent of a child with schizophrenia
Schizophrenia always involves a change in ability and personality. Family members and friends remark that the person is "not the same." Because they are experiencing perceptual difficulties-distinguishing what is real from what is not real-the person who is ill often begins to withdraw as these symptoms become more pronounced. Deterioration is usually observed in:
People with schizophrenia often hear voices. Sometimes the voices
are threatening or condemning; they may also give direct orders such as,
"kill yourself". There is always a danger that such commands will be
obeyed.
There may also be visual hallucinations -- a door in a wall where no door exists; a lion, a tiger, or a long-dead relative may suddenly appear. Colours, shapes, and faces may change before the person's eyes.
There can be hypersensitivity to sounds, tastes, and smells. The ring of a telephone might seem as loud as a fire alarm bell, or a loved one's voice as threatening as a barking dog. Sense of touch may also be distorted. Someone may literally "feel" their skin is crawling -- or conversely, a person may feel nothing, not even pain from a real injury.
Such intense misperceptions of reality can trigger feelings of dread, panic, fear, and anxiety -- natural reactions to such frightening experiences. Psychological distress is intense, and most of it remains hidden inside, its existence denied.
The pain of schizophrenia is further accentuated by the person's awareness of the worry and suffering they may be causing their family and friends. People with schizophrenia need understanding, patience, and reassurance that they will not be abandoned.
Prior to an acute phase of the illness, families may notice one or more of the following symptoms. The number and severity of these symptoms differ from person to person -- although everyone mentions noticeable social withdrawal.
Since we now know this, it is important for family members to assess their coping skills and try to anticipate and adapt to the ups and downs of the illness. Calm assurance, assistance and support from family members can make a difference to the person with schizophrenia.
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Encouraging an adult child to live away from home is a loving positive act, not a rejection. For someone with schizophrenia, this can be the first step towards independent living. Living apart can also mean that the quality of family time spent together is actually better -- resulting in less stress for everyone. No one can be on duty 24 hours a day (doing what three hospital shifts do) and also be emotionally involved, without suffering physical and psychological damage. Remember that schizophrenia does NOT interfere with a person's intelligence. If parents continue to "give their all" and ultimately burn out, they are of little use to anyone. In addition, the person who is ill ends up unfairly carrying a terrible burden of guilt for such sacrifices.
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Before identifying a specific type of schizophrenia, doctors should consider the family and personal history of the patient, and do a thorough physical and neurological examination. When all available information is analyzed, if the person is diagnosed with schizophrenia, there may be a further classification into one of the following categories:
Disorganized type (also referred to as "hebephrenic" type)
Catatonic type
Diagnostic criteria include:
Residual type
This term is used when there is at least one recognizable episode of
schizophrenia but no ongoing obvious psychotic symptoms. Less florid signs
of the illness may continue -- social withdrawal, eccentric behaviour,
inappropriate emotions, illogical thinking, etc.
| "It has been 20 years since I first became mentally ill. As I approach
40, I find myself still struggling with the same symptoms, still crippled
by the same fears and paranoia. I am haunted by an evasive picture of what
my life could have been, whom I might have be come, what I might have accomplished.
My schizophrenia is a sad realization, a painful reality, that I live with
every day.
...I probably inherited a predisposition to mental illness; my uncle was diagnosed as having dementia praecox, an earlier term for schizophrenia. In my senior year of high school, I began to experience personality changes. I did not realize the significance of the changes at the time, and I think others denied them -- but looking back I can see that they were the earliest signs of illness. I became increasingly withdrawn and sullen. I felt alienated and lonely and hated everyone. I felt as if there was a huge gap between me and the rest of the world; everybody seemed so distant from me. I reluctantly went off to college, feeling alone and totally unprepared for life away from home. I was isolated and had no close friends. As time went on, I spoke to virtually no one. Increasingly during classes I found myself drawing pictures of van Gogh and writing poetry. I forgot to eat and began sleeping in my clothes. Performing even the most routine activities, such as taking a shower, rarely even occurred to me. Toward the end of my first semester, I had my first psychotic episode. I did not understand what was happening and was extremely frightened. The experience left me exhausted and confused, and I began hearing voices for the first time. I was admitted to a psychiatric hospital, diagnosed as having schizophrenia,
treated with medications and released after a few months.
It was not until much later that I made a conscious effort to develop a sense of control, realizing that I had the power to decide what form my life would take and who I would be. For the next ten years, I did not require hospitalization. During that time, I was divorced from my first husband and married a community mental health centre psychiatrist. Although I experienced some acute flare-ups of symptoms during that period, I had no recurrence of persistent, disabling symptoms. When more serious symptoms returned about ten years later, I denied their existence. Having discontinued medications years earlier and now withdrawing from other forms of support, I experienced more symptoms. I decided to investigate a private psychiatric residential halfway house that one of the nurses at the hospital had told me about. I sought and gained admission to the program. Staff at this facility believed in my potential, and I began to develop confidence in myself. I was now ready to take control of my life. My estranged second husband and I moved into an apartment together, and I threw myself into the task of finding employment. None of these steps were accomplished easily, but the pieces of my periodically disrupted life were coming back together. Like those with other chronic illnesses, I know to expect good and bad times and to make the most of the good. I take my life very seriously and do as much as I can when I am feeling well, because I know that there will be bad times when I am likely to lose some of the ground I have gained. Professionals and family members must help the ill person set realistic goals. I would entreat them not to be devastated by our illnesses and then transmit this hopeless attitude to us. I would urge them never to lose hope, for we will not strive if we believe the effort is futile." From the article, "The Treatment of Schizophrenia: A Patient's Perspective", Hospital and Community Psychiatry, Vol. 38, No.5, May 1987. |
“The typical family of a mentally ill person is often in chaos. Parents look frantically for answers that usually can't be found. Hope turns to despair, and some families are destroyed no matter how hard they try to survive.”When a family learns their child has schizophrenia, they experience a range of strong emotions. They are usually shocked, sad, angry, confused, and dismayed. Some have described their reactions as follows:-- Parents of an adolescent with schizophrenia
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New York Times, September 11, 1988 "My sister Sally is mentally ill. Now 47, she was first hospitalized almost 30 years ago, during her senior year in boarding school. Labelled schizophrenic then, she is now diagnosed as having bipolar -- or manic-depressive -- illness. Very generally speaking, schizophrenia causes thought disorders and bipolar illness causes mood disorders. When Sally has been manic, she has given away possessions, become obsessed with elaborate projects, stopped eating and finally, suffered from delusions. Sally has not worked for pay since 1980, when she was forced to retire from the part-time position she held as a government clerk. For almost two years after losing her job, she lived in various apartments, halfway houses and rented rooms. In 1982, our mother brought her home. I missed most of the crises of Sally's 20's and 30's. At first, being eight years younger, I was just not old enough to understand or even to pay much attention. As a teenager, I tried to ignore Sally because she was different, and I was afraid of being different myself. After our father died suddenly of a heart attack, our house became a place of quiet sadness. I spent little time there. I went away to college; after graduating, I moved to Seattle -- about as far as one can get from Arlington. I kept in touch by phone, but I visited infrequently. It isn't unusual for someone with a chronically mentally ill sibling to try to run away from family tensions. It was only by physically removing myself that I felt I could survive. I was abetted in my escape by my mother, who loved for me to be happy and was, I know, relieved to have one independent child. Unfortunately, like many escapees, I had mixed feelings about it, including guilt and dread. I once thought that when my mother died I would rather kill myself than have to take care of Sally as she did. It seemed clear: either I would go back home to monitor Sally, or I would fail my sister utterly and be unable to live with myself. It was just a choice of which way to give up my life." |
“NEVER BECOME a moth around the flame of self-blame: it can destroy your chance of coping, FOREVER. It can destroy YOU...”-- Dr. Ken Alexander, 14 Principles for the Relatives
“People do not cause schizophrenia, they merely blame each other for doing so.”Unfortunately, there is a common tendency among people with schizophrenia and their family members to blame themselves or to blame one another. Moreover, sisters and brothers often share the same worries and fears as their parents.-- E. Fuller Torrey, MD.
In the following story, a parent describes "blame and shame" from personal experience...
| “I have two sons. My older son is 22 and is in an advanced stage
of muscular dystrophy. My younger son is 21 and has been diagnosed as chronically
mentally ill.
The son who is physically disabled has many special needs. He gets emotional support everywhere he turns. His handicap is visible and obvious and the community, family and friends open their hearts to him and go out of their way to make his life better. My other son, on the other hand, is misunderstood and shunned by all. He is also terribly disabled...but his disability is not visible. His grandparents, aunts, uncles and cousins all think that he's lazy, stupid, weird and naughty. They suggest that somehow, we have made some terrible mistake in his upbringing. When they call on the phone they ask how his brother is and talk to his brother but they never inquire about him. He upsets them. They also wish that he'd go away.” Excerpt from Alliance for the Mentally Ill of Southern Arizona Newsletter |
What family members need in order to cope:
“Research on families of people with schizophrenia has found that a good family environment can be a major factor in improving the chances of stabilizing the disease and preventing serious relapses.”The family can play an important role in all aspects of helping someone with schizophrenia. If you are concerned about schizophrenia in your family, you will want to be aware of some basics.-- Dr. Ian Falloon, et al. “Compassion follows understanding. It is therefore incumbent on us to understand as best we can-the burden of disease will then become lighter for all.”
-- E. Fuller Torrey, MD.
1. WARNING SIGNS
When odd behaviour is experienced or observed, it makes good sense to seek advice from a doctor. An acute episode may happen suddenly, or symptoms may develop over a period of time. The following symptoms are important:
2. GETTING TREATMENT
3. HELPING MAKE THE MOST OF TREATMENTTIPS FOR MAKING FIRST CONTACT! A) Rehearse before you call. State what you need clearly and briefly. Make a note of the names of the people you talk to, along with the date and approximate time.
B) If you cannot get the help or information you need -- Ask to speak to a case manager, supervisor, or the person in charge.
C) If you cannot immediately reach the doctor or case manager -- Ask when you may expect a return call, or when the person will be free for you to call back.
There may be exchanges between doctor and patient that the patient feels are of a highly personal nature and wants to keep confidential. However, family members need information related to care and treatment. You should be able to discuss the following with the doctor:
Help the person with schizophrenia maintain a record of information on:
Family and friends should be familiar with signs of "relapse" -- where the person may suffer a period of deterioration due to a flare up of symptoms. It helps to know that relapse signs often recur for an individual. These vary from person to person, but the most common signs are:
Ensure that medical treatment continues after hospitalization. This means taking medication and going for follow-up treatment.
Provide a structured and predictable environment. The recovering patient will have problems with sensory overload. To reduce stress, keep routines simple, and allow the person time alone each day. Try to plan non-stressful, low-key regular daily activities, and keep "big events" to a minimum.
Be consistent. Caregivers should agree on a plan of action and follow it. If you are predictable in the way you handle recurring concerns, you can help reduce confusion and stress for the person who is ill.
Maintain peace and calm at home. Thought disorder is a great problem for most people with schizophrenia. It generally helps to keep voice levels down. When the person is participating in discussions, try to speak one at a time, and at a reasonably moderated pace. Shorter sentences can also help. Above all, avoid arguing about delusions (false beliefs).
Be positive and supportive. Being positive rather than critical will help the person more in the long run. People with schizophrenia need positive, frequent encouragement, since self-esteem is often very fragile. Encourage all positive efforts. Be sure to express appreciation for a job even half-done, because the illness undermines a person's confidence, initiative, patience, and memory.
Assist the ill person to set realistic goals. People with schizophrenia need lots of encouragement to regain some of their former skills and interests. They may also want to try new things, but should work up to them gradually. If goals are unreasonable, or someone is nagging, the resulting stress can worsen symptoms.
Gradually increase independence. As participation in a variety of tasks and activities increases, so should independence. Set limits on how much abnormal behaviour is acceptable, and consistently apply the consequences. Some relearning is usually necessary for skills such as handling money, cooking, and housekeeping. If outside employment is too difficult, try to help the person plan to use their time constructively.
Learn how to cope with stress together. Anticipate the ups and downs of life and try to prepare accordingly. The person who is ill needs to learn to deal with stress in a socially acceptable manner. Your positive role-modelling can help. Sometimes just recognizing and talking about something in advance that might be stressful can also help.
Encourage your relative to get out into the community. Encourage them to try something new, and offer help selecting an appropriate activity. If requested, go along the first time for moral support.
6. LOOKING AFTER YOURSELF AND OTHER FAMILY MEMBERS
Be good to yourself. “SELF-CARE” is very important -- even crucial -- to every individual, and ultimately helps the functioning of the entire family. Let go of guilt and shame. Remember -- poor parenting or poor communication did not cause this illness. Take comfort and gain strength from the positive things your family has experienced together.
Value your own privacy. Keep up your friendships and outside interests, and lead as orderly a life as possible.
Do not neglect other family members. Brothers and sisters often secretly share the same guilt and fear as their parents. Or they may worry that they might become ill too. When their concerns are neglected because of the ill person, they may feel jealous or resentful. Siblings of people with schizophrenia need special attention and support to deal with these issues.
GET SUPPORT...
LEARN FROM OTHERS WHO HAVE SIMILAR EXPERIENCE
Check for resources in your community. If you are the parent, spouse, sibling, or child of someone with schizophrenia -- it helps to know you are not alone. Approximately 35,000 people in B.C. have schizophrenia. That means there are a great many family members who are coping with issues similar to your own.
Support groups are good for sharing experiences with others. You will also get useful advice about your local mental health services from those who have "been there."
Knowing where to go and who to see -- and how to avoid wasting precious time and energy -- can make a world of difference when trying to find good treatment. Continuity of care is also important. Ultimately, this involves ongoing medical, financial, housing, and social support systems. All these services are crucial for recovery -- yet they tend to be very poorly coordinated. Support groups can help you start putting the pieces of this puzzle together. They can also advocate for better, more integrated services for people with schizophrenia and their families.
“Schizophrenia is not the dreaded disease it was about 30 years ago. Now, with early diagnosis, speedy initiation of treatment, careful monitoring of medication, regular follow-up, proper residential, vocational and rehabilitative support systems in place, the long-term outcome is quite favourable.”-- A psychiatric professional “Health professionals talk about how things could be or should be. The way things are is that many crucial support systems do not exist. As a result, schizophrenia becomes a living hell for the sufferer and his family.”
-- Parent of a young man with schizophrenia
First of all, since schizophrenia can resemble other diseases, assessment and treatment must involve well-qualified people. Furthermore, since it is a chronic illness, continuing medical care and prescription medications are needed. So, as prominent psychiatrist Fuller Torrey says, "There is no avoiding the doctor-finding issue."
One way to start is to ask someone in the medical profession who they would go to if someone in their family had schizophrenia. Another way is by talking with other families who have an ill relative. They will often be able to put you in touch with the best resources in your community, and save you a lot of time and frustration. Sharing this type of information is one of the most valuable assets of your local B.C. Schizophrenia Society branch, and is an important reason to join the organization.
Besides finding someone who is medically competent, you need to find someone who is interested in the disease, has empathy with its sufferers, and is good at working with other members of the treatment team. As Dr. Torrey points out:
Psychologists, psychiatric nurses, social workers, case managers, rehab specialists and others are all part of the therapeutic process. Doctors who are reluctant to work as team members are not good doctors for treating schizophrenia, no matter how skilled they may be in psychopharmacology.
Specifically, you need to find a doctor who:
If you are uneasy or lack confidence in the medical advice you receive, remember that you do have the right to another opinion from other doctors -- even if from another city.
Medication
Most patients with schizophrenia have to take medication regularly
to keep their illness under control. It is not possible to know in advance
which medication will work best for an individual. Many medication adjustments
may be required. This period of trial and error can be very difficult for
everyone involved. Some medications have unpleasant side effects -- dry
mouth, drowsiness, stiffness, restlessness, etc.
Education
Patients and their families must learn all they can about schizophrenia.
They should also be directly included in planning the treatment program.
Families should find out what assistance is available in their community
-- including day programs, self-help groups, and work and recreation programs.
It is most important for the patient and the family to accept the fact
of the illness, and begin to learn how best to manage it.
Family Counselling
Since the patient and the family are often under enormous emotional
strain, it may be advantageous to obtain counselling from professionals
who understand the illness.
Hospitalization and Regular Follow-up
If someone becomes acutely ill with schizophrenia, they will probably
require hospitalization. This allows the patient to be observed, assessed,
diagnosed, and started on medication under the supervision of trained staff.
The purpose of hospitalization is proper medical care and protection. Once
the illness is stabilized and the patient is discharged from hospital,
regular follow-up care will reduce the chances of relapse.
Residential and Rehabilitation Programs
Social skills training, along with residential, recreational, and vocational
opportunities tailored to people with mental illness are very important.
Used as part of the treatment plan, they can result in improved outcomes
for even the most severely disabled people.
Self-Help Groups
Families can be very effective in supporting each other and in advocating
for much- needed research, public education, and community and hospital-based
programs. People with mental illness can also provide consultation and
advocacy in these areas, as well as offering peer support to other individuals
with schizophrenia.
Nutrition, sleep and exercise
Recovery from schizophrenia, as with any illness, requires patience.
It is aided by a well-balanced diet, adequate sleep, and regular exercise.
However, the illness and the side effects of medication can interfere with
proper eating, sleeping, and exercise habits. There may be appetite loss,
lack of motivation, and withdrawal from normal daily activity. Someone
who is ill may simply forget to eat, or become very suspicious about food,
so supervision of daily routines may be required. If you are a family member
or friend who is trying to help -- be patient. Above all, don't
take seeming carelessness or disinterest personally.
Electroconvulsive Therapy (ECT)
ECT is not normally used for patients with schizophrenia unless
they are also suffering from extreme depression, are suicidal for long
periods, and do not respond to medication or other treatments.
"Schizophrenia is a most complex and puzzling disease. And now, after 100 years of enigmatic puzzling, I believe we may be on the threshold of an entire new era of understanding."According to Dr. Liddle, the more we understand the higher functions of the brain and its interactions, the more we can explore, in a meaningful way, how the mind and the brain work together.-- Dr. Peter Liddle, Jack Bell Chair in Schizophrenia Research
University of British Columbia
In other words, we can finally go beyond notions and provide rational bases for why certain treatments work. The reason for this is the development of tools and techniques that now allow us to systematically explore patterns of brain activity...
| - EEG's (Electroencephalograms) show that electrical impulses
used by the brain to send messages to other parts of the body are abnormal
in many people with schizophrenia.
- CT (Computerized Tomography) and MRI (Magnetic Resonance Imaging) scans show that brain structures of some people with schizophrenia are different from people without the illness. One important anomaly in schizophrenia, for example, is enlarged ventricles (the small spaces in the brain through which cerebral spinal fluid circulates.) - PET (Positron Emission Tomography) uses a radioactive compound to help measure blood flow in different parts of the brain. It is possible to see, for instance, how the brain activity in people with schizophrenia differs from that of people who are not ill -- and to identify the specific areas where such differences occur. Partly because of these tools, treatment for schizophrenia has greatly improved -- and will continue to be influenced by new research discoveries. |
"There is no way at present to predict who will respond best to which medication."Trying to understand a bewildering array of medication terminology can be frustrating. It's always a good idea to learn at least some of the technical "lingo" that mental health professionals use. A user-friendly reference book, such as Fuller Torrey's Surviving Schizophrenia, is a great help.-- E. Fuller Torrey
Generally, medications for treating psychotic symptoms of schizophrenia are referred to as antipsychotics, or sometimes neuroleptics.
"STANDARD" ANTIPSYCHOTICS
Until recently, doctors referred to antipsychotic medications neuroleptics because
of their tendency to cause neurological side effects. Medications that have
been around for a few years are now called "standard" antipsychotics. Examples
of standard antipsychotics include Thorazine,
Mellaril, Modecate,
Prolixin, Navane,
Stelazine and
Haldol.
Side Effects (EPS)
Side effects can be a major problem with standard antipsychotic medications.
These neurological side effects are called "extrapyramidal symptoms"
(EPS for short). Specific examples of EPS include akinesia (slowed movement),
akathisia (restless limbs), and tardive dyskinesia (permanent, irreversible
movement disorders.)
"ATYPICAL" ANTIPSYCHOTICS
The newer antipsychotic drugs are called "atypical" antipsychotics.
Atypical medications are being used more and more frequently. They are
called "atypical" because they:
Risperidone (Risperdal)
The use of risperidone to date has been encouraging. While not effective
for everyone, it is now generally considered the first-line treatment
for newly-diagnosed patients. Side effects -- which often discourage people
from taking their medication -- are usually minimal at regular maintenance
dosages.
Clozapine (Clozaril)
Clozapine has been acclaimed because about one-third of patients with
treatment-resistant (called refractory) schizophrenia who do not
respond to other medications show at least some improvement on clozapine.
It is also recommended for people who are showing signs of tardive dyskinesia,
since it rarely causes or worsens this condition.
The major drawback of clozapine is the slight risk (1%) that it will cause white blood cells to decrease, thereby decreasing the person's resistance to infection. People taking clozapine must have their blood counts monitored very regularly (once a week or every two weeks.)
Olanzapine (Zyprexa)
Olanzapine is a newly-approved medication, and is not yet readily available
in B.C. It apparently has a chemical profile similar to that of clozapine
-- but because there is no blood risk, there is no need for frequent blood
testing.
Other New Antipsychotics Under Development
Several other new antipsychotic medications are being tested. Most
of these new drugs are "atypicals" -- meaning they fall into the same category
as risperidone and clozapine. The names of some that are currently in final
trial stages are seroquel, sertindole, and ziprasidone. If
all goes well, it is hoped they will also be available soon.
Reasons for Switching Medication
The most common reasons for switching from a standard to an "atypical"
antipsychotic are:
Some of the most recent and hopeful news in schizophrenia research is emerging from studies in the field of psychiatric "rehab."
These studies challenge several long-held myths in psychiatry about the inability of people with schizophrenia to recover from their illness. It now appears that such myths, by maintaining an overall pessimism about outcomes, may significantly reduce patients' opportunities for improvement and/or recovery.
In fact, the long-term perspective on schizophrenia should give everyone a renewed sense of hope and optimism. According to Dr. G. Gross, author of a 22-year study of 508 patients with schizophrenia:
“ ...schizophrenia does not seem to be a disease of slow, progressive deterioration. Even in the second and third decades of illness, there is still potential for full or partial recovery.”Clinicians who have spent their careers investigating the long-term course and prognosis of schizophrenia are now presenting a very different picture of the illness from the gloomy scenario painted just a few years ago.
After two decades of empirical study, it is now clear that good rehabilitation programmes are an important part of treatment strategy. Furthermore, the importance of family input for treatment and appropriate relations between clinicians and families are now well established.
Families need and want education, information, coping and communication skills, emotional support, and to be treated as collaborators. For this reason, knowledgeable clinicians will make a special effort to solicit involvement of family members. Sometimes this is not easy, because many families were previously hurt by being "blamed" for the illness. It may mean a clinician has to make a special effort to entice some families into collaboration by acknowledging the difficulties they experienced in the past, and apologizing for the way they were treated by the mental health system. However, once a relationship is established, clinician, patient and family can work together to identify needs and appropriate interventions. Everyone should be able to have realistic yet optimistic expectations about improvement and possible recovery.
“Schizophrenia affects young people in the prime of their lives. It is a major set-back in their plans and hopes for the future.”-- Dr. Ian Falloon
A. There is no way of knowing exactly who will get schizophrenia.
However, about 1 in 100 people worldwide have the illness. Since schizophrenia
tends to run in families, your chances may be higher if someone in your
family has the disease. For example, it is estimated that:
A. Yes. In rare instances, children as young as five have
been diagnosed with the illness. They are often described as being different
from other children from an early age. Most people with schizophrenia,
however, do not show recognizable symptoms until adolescence or young adulthood.
A. If you think you have symptoms of schizophrenia, you should
talk to a doctor who has experience treating the illness. This is very
important because early diagnosis and treatment means a better long-term
prognosis.
A. Schizophrenia tends to run in families, but that doesn't
necessarily mean you should not marry and have children. Since everyone
wants to be a good parent and provider for their family, you will need
to ask yourself some important questions:
A. We all need friends who stick with us through good times
and bad. People with schizophrenia will value your friendship. They are
often discriminated against by those who are ignorant about the illness.
Many people with schizophrenia have high I.Q.'s. Unless someone is experiencing
symptoms of their illness, there will be nothing especially unusual about
their behaviour.
You can be a real friend by trying to understand the illness and by educating others when the opportunity arises. Let them know the facts. Also, if you can, try to get to know your friend's family. For example, families might help you understand how your friend may sometimes be overwhelmed and discouraged because of the chronic and persistent nature of the illness. Once you know this, you can help by just being supportive and encouraging during these rough times.
If you're planning social activities with your friend, it helps to remember:
A. No. Street drugs do not actually cause schizophrenia.
Since some people who take street drugs may show schizophrenia-like symptoms,
people who have schizophrenia are sometimes accused of being "high on drugs".
"Real friends never pressure their friends to use drugs."
A. Evidence indicates that if someone has a predisposing
factor, drugs like cannabis (marijuana, hash, hash oil, etc.) may trigger
an episode of schizophrenia. This may or may not clear up when use of the
drug stops. If your family has a history of mental illness, extra caution
might be wise.
Street drugs can be risky for anyone, but for people with schizophrenia, they are particularly dangerous. As mentioned earlier, certain drugs can cause relapses and make the illness worse.
All street drugs should be avoided, including:
A. Moderate use of alcohol (one or two glasses of
wine or beer) doesn't seem to trigger psychotic symptoms, but heavy use
certainly does.
People on medication should be especially careful. Since alcohol is a depressant, it can be life-threatening when combined with medications like tranquilizers (clonazapam, Rivotril, Ativan, Valium, alprazolam, etc.) Each multiplies the effect of the other -- often with disastrous results.
The following may also trigger symptoms of schizophrenia:
“Professionals ... must help the ill person set realistic goals. I would entreat them not to be devastated by our illness and transmit this hopeless attitude to us. I urge them never to lose hope; for we will not strive if we believe the effort is futile.”-- Esso Leete (who has lived more than 20 years with schizophrenia and now educates others about mental illness)
"Partnership Education"Find out about the B.C. Schizophrenia Society's Partnership Education.In-class Partnership Education presentations are an invaluable aid for helping students understand the nature and prevalence of chronic and severe mental illness. Partnership Education brings together three individuals who work as a team to present the facts about schizophrenia. One person has a psychiatric diagnosis, one is a family member, and one is a mental health professional. They come into your classroom together, each to tell their personal story. Partnership Education presentations elicit immediate and thoughtful class participation. Mental illness is demystified. Students' questions are answered directly by people with first-hand knowledge and experience. The Partnership Education program helps fight ignorance, prejudice, dusty old Hollywood myths, and hurtful stereotypes. It also provides vital facts about the physical nature of mental illness, and helps many individual students whose family members suffer from mental illness. |
Teachers can also help raise awareness by:
Remember --
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“One thing I find really hard about my illness is the stigma.”Society's knowledge of major mental illness lags way behind the facts. People with schizophrenia are victims of this general ignorance. In truth, they are victims twice over. First, they have an incurable, chronic brain disease that they must learn to live with as best they can. Next, because of their illness, they are discriminated against.-- Shawna, a person with schizophrenia “The worst thing about having schizophrenia is the isolation and the loneliness...”
-- Dr. Phillip Long, psychiatrist
What is the biggest problem for people with mental illness? Most say it's the fact that others do not accept them. Once they have learned to manage their symptoms, they still have to face overwhelming difficulties with friends, housing, and work. They feel the sting of discrimination in almost everything they do. Old friends and even some family members are uncomfortable in their presence. So they become isolated, cut off from society.
No wonder so many people with schizophrenia feel they don't belong; that they are "different"; that they are not respected or valued. Widespread, hurtful ignorance leads to the terrible social isolation and loneliness that can become the most disabling feature of the illness.
Fear of Criminal Intentions
People with psychiatric disorders are no more likely to commit crimes
than the general population. However, if mental illness is left untreated
and allowed to become progressively more severe, people who are acutely
ill may inadvertently end up in jail. Another common confusion has to do
with the nature of involuntary hospitalization, which is sometimes necessary
to treat and safeguard someone who is very ill. Hospitalization for
medical treatment to regain one's health should never be falsely equated
with incarceration in the criminal justice system.
Fear of the Unknown
People often fear what they do not understand. And when they don't
understand, they often make wild guesses. Some cultures believe mental
illness is the work of evil spirits, while others believe it is caused
by bad blood, poisons, or lack of moral integrity. As people learn more
about the real nature of mental illness, many of these harmful beliefs
fade.
Aversion to Illness
After hundreds of years, "mental illness" has finally been identified
as a disease just like epilepsy, Parkinsonism, or diabetes. But this change
from the realm of the witch doctor to the medical doctor doesn't erase
all negative feeling -- only lessens it somewhat. The public still has
a very strong aversion to hospitals, disease, and doctors.
| Better health education programs can help do away with old myths and misunderstandings. Giving patients the necessary supports to recover in their own communities will also help overcome the general prejudice against all people with mental illness. |
“Perhaps the one factor which holds back psychiatric research more than any other is the social stigma that remains attached to mental disease.”For many years, stigma caused families to shy away from public involvement -- for fear of causing further hurt or embarrassment to the person who was ill, or to other family members. Because of this silence, the general public did not see the evidence of suffering and neglect, nor did they realize the great number of unmet needs. Lack of advocates to present the facts about schizophrenia meant that funding for schizophrenia research has lagged far behind funding for other illnesses.-- Dr. Henry Friesen - President, Medical Research Council of Canada
In his 1995 address to the Canadian Psychiatric Association, Medical Research Council President Dr. Henry Friesen praised the initiative shown by Nobel Laureate in Chemistry, Dr. Michael Smith. Dr. Smith donated half his Nobel Prize money towards the promotion of research training in schizophrenia --
“To me, it was an inspirational act for Dr. Smith to associate himself with the research field, thereby raising the profile of schizophrenia -- and promoting the notion of schizophrenia as a disease worthy of academic investigation and support.”The table following (Research Funding) shows at least part of the problem. Clearly, psychiatric research is underfunded.* Since psychiatrists are the doctors who specialize in treating schizophrenia, there is cause for concern when we consider these figures. The total number of appointments in psychiatry is the largest of all the specialities -- but until recently, there appears to have been little drive to secure research funding.
It is hoped that raising the profile of schizophrenia research will eventually lead to:
| DISCIPLINE | TOTAL NUMBER OF APPOINTMENTS | % WITH RESEARCH FUNDING | % WITH PEER-REVIEWED FUNDING |
| ALLERGY & CLINICAL IMMUNOLOGY | 34 | 55.9 | 52.9 |
| CARDIOLOGY | 27 | 42.3 | 31 |
| NEUROLOGY | 189 | 52.9 | 42.3 |
| PSYCHIATRY | 631 | 18.5 | 12.6 |
| IMAGING & RADIOLOGY | 380 | 13.2 | 8.1 |
| RESPIRATORY MEDICINE | 193 | 49.7 | 38.8 |
-- Medical Research Council of Canada
Multiple personality disorders do exist, but they are rare, and not a form of schizophrenia. Nevertheless, the idea that "Schizophrenia equals split personality" is pervasive. When people in everyday life describe something as schizophrenic, they think they mean "split into contrasting parts." It isn't a question of political correctness -- it is simply a wrong use of language. However, it's still a fairly common error.
The myth of the "violent madman" is another a legacy of popular fiction. People with schizophrenia were once cruelly portrayed as menacing figures. Because of these depictions, many people still have the erroneous idea that all people suffering from schizophrenia must be violent.
The truth is that people with schizophrenia are usually less violent than others. They are often very timid -- afraid of being hurt in their fragile and vulnerable state.
However, problems with violence and aggression may arise for certain people who are unable to stay on their medication, especially if there is concomitant, habitual use of drugs and/or alcohol. If someone has a history of violence towards themselves or others, it is always necessary to take appropriate precautions.
The point is not to be afraid of someone just because they have schizophrenia. It's not fair, and everyone suffers -- the feared and the fearing.
Affective Disorders or Mood Disorders
Characterized by greatly exaggerated emotional reactions and mood swings
from high elation to deep depression. Commonly used terms are manic-depression
(or bipolar disorder) and depression -- although some people
experience only mania and others only depression. These extreme mood changes
are unrelated to changes in the person's environment.
Delusion
A fixed belief that has no basis in reality. People suffering from
this type of thought disorder are often convinced they are famous people,
are being persecuted, or are capable of extraordinary accomplishments.
Diagnosis
Classification of a disease by studying its signs and symptoms. Schizophrenia
is one of many possible diagnostic categories used in psychiatry.
Electroconvulsive Therapy (ECT)
Used primarily for patients suffering from extreme depression for long
periods, who are suicidal, and who do not respond to medication or to changes
in circumstances.
Hallucination
An abnormal experience in perception. Seeing, hearing, smelling, tasting
or feeling things that are not there.
Medication
In psychiatry, medication is usually prescribed in either pill or injectable
form. Several different types of medications may be used, depending on
the diagnosis. Ask your doctor or pharmacist to explain the names and functions
of all medications, and to separate generic names from brand names in order
to reduce confusion.
People who are very ill may be admitted to a mental health facility against their will, or involuntarily. There are two ways this can occur:
Mental Health
Describes an appropriate balance between the individual, his or her
social group, and the larger environment. These three components combine
to promote psychological and social harmony, a sense of well-being, self-actualization,
and environmental mastery.
Mental Health Act
Provincial legislation for the medical care and protection of people
who are mentally ill. The Act also ensures the rights of patients who are
being held under two certificates, and describes advocacy and review procedures.
Paranoia
A tendency toward unwarranted suspicions of people and situations.
People with paranoia may think others are ridiculing them or plotting against
them. Paranoia falls within the category of delusional thinking.
Psychosis
Hallucinations, delusions, and loss of contact with reality.
Schizophrenia
Severe and often chronic brain disease. Common symptoms -- personality
changes, withdrawal, severe thought and speech disturbances, hallucinations,
delusions, bizarre behaviour.
Side Effects
Side effects occur when there is drug reaction that goes beyond or
is unrelated to the drug's therapeutic effect. Some side effects are tolerable,
but some are so disturbing that the medication must be stopped. Less severe
side effects include dry mouth, restlessness, stiffness, and constipation.
More severe side effects include blurred vision, excess salivation, body
tremors, nervousness, sleeplessness, tardive dyskinesia, and blood disorders.
Some drugs are available to control side effects. Learning to recognize side effects is important because they are sometimes confused with symptoms of the illness. A doctor, pharmacist, or mental health worker can explain the difference between symptoms of the illness and side effects due to medication.
Treatment
Refers to therapy or remedies designed to cure a disease or relieve
symptoms. In psychiatry, treatment is often a combination of medication,
counselling (advice) and recommended activities. Together, these make up
the patient's treatment plan.