Excerpts from Must Read Books & Articles on Mental Health
Topics
Books, Part III
Surviving Schizophrenia- E. Fuller Torry
Chapter Nine- Six Major Problems of Schizophrenia. pp. 251-273.
Although insanity is a disease to which every man is liable, a feeling
prevails regarding it obviously different from any that prevails regarding most diseases.
It is so incapacitating, and involves such complete dependence; its effects upon the civil
and social condition of a man are so distinctive; and it is the subject of so much popular
apprehension and horror, that it demands a consideration, especially if a cure is
expected, that is peculiar to itself. American Journal of Insanity, 1868
Having the misfortune to be afflicted with schizophrenia brings with
it many problems, both for those affected and for their families. Of all those problems,
six stand out as among the most common, the most persistent and the most perplexing. These
problems are cigarettes and coffee; alcohol and street drugs; sex, pregnancy, and AIDS;
medication noncompliance; assaultive and violent behavior; and suicide.
Cigarettes & Coffee
One cannot overstate the importance of cigarettes and
coffee in the daily lives of many people with schizophrenia. They are a major focus of
social interaction, expenditure of funds, accumulation of debt, and trading of favors.
Some individuals with schizophrenia are so obsessed with obtaining cigarettes and coffee
that it appears to dominate their daily activities.
Several studies have shown that between 80 and 90 percent of
individuals with schizophrenia smoke cigarettes. This is significantly higher than. the
approximately 50 percent smoker rate among psychiatric patients with other diagnoses or
the 30 percent rate in the general population. Studies have also shown that individuals
with schizophrenia are more likely to be heavy smokers and to smoke high-tar cigarettes.
One study conservatively estimated that individuals with schizophrenia in the United
States smoke over 10 billion packs of cigarettes each year, costing a total of over $20
billion.
Many explanations have been proposed to account for heavy smoking among
individuals with schizophrenia. Boredom from sitting on inpatient wards may account for
some of it, but the incidence of heavy smoking among outpatients is almost as high as it
is among inpatients. Nicotine reduces anxiety, reduces sedation, and improves
concentration in some people, which might be a form of self-medication for the person with
schizophrenia. The self-medication theory received support when a study of people with
schizophrenia reported that smoking transiently improved specific brain functions
(auditory sensory gating) that are known to be impaired in this disease. There are also
two studies showing that smoking decreases the Parkinson-like stiffness and tremor that
often occur as side effects of antipsychotic medication.
Nicotine is known to affect the receptors for many brain
neurotransmitters and to promote the release of dopamine, serotonin, acetylcholine, and
norepinephrine. There are also nicotine receptors in the brain and it is possible that
these might be related to schizophrenia. Nicotine has been shown in some studies to
decrease the blood level of antipsychotics by increasing excretion by the kidneys. Smokers
with schizophrenia are known to require higher doses of antipsychotic medication than
nonsmokers, but whether this is a result of the increased excretion is less certain. On
the other hand, a study of Tourette's disease reported that nicotine potentiated the
effects of haloperidol in decreasing tics. In summary, we really do not know why
individuals with schizophrenia are such heavy smokers.
The consequences of smoking are well known. Individuals with
schizophrenia have elevated death rates from pneumonia and heart disease but it is not
known how much of this is because of smoking and how much is because of the relatively
poor medical care most of them receive. Smoking, especially in individuals who are
mentally confused, can be dangerous, and serious fires in group homes caused by careless
smoking are not uncommon. One study found an increased incidence of akathisia among
individuals with schizophrenia who were smokers. Two studies reported that smoking also
increased the risk for developing tardive dyskinesia but a third study did not find this
association.
One would also predict that individuals with schizophrenia should have
a very high incidence of lung cancer. One of the intriguing mysteries about this disease,
however, is that the lung cancer rate in schizophrenia appears to be lower than the
general population, not higher. There has been speculation whether antipsychotic
medication might in some way be protective and account for this, but this explanation
seems unlikely since at least two studies reported a lower lung cancer rate in
schizophrenia before antipsychotic drugs were introduced.
Caffeine intake among individuals with schizophrenia is also very heavy
but has not been quantified as precisely as has smoking. Patients have been documented
drinking 30 or more cups of coffee each day as well as drinking many colas, which also
contain caffeine. There are also occasional individuals with schizophrenia who buy instant
coffee and eat it directly from the jar with a spoon. Like nicotine, it is not understood
why individuals with schizophrenia are so strongly addicted to caffeine, although caffeine
is known to affect adenosine receptors in the brain and, through them, the metabolism of
dopamine, serotonin, GABA, glutamate, and norepinephrine. One study also suggests that
caffeine may decrease Parkinsonian symptoms such as rigidity and tremor.
It is known that high caffeine intake in anyone can produce the
symptoms of caffeine intoxication, including nervousness, restlessness, insomnia,
excitement, flushing of the face, rapid heart beat, and muscle twitching. Studies of
individuals with schizophrenia who ingest large amounts of caffeine have demonstrated that
some patients have a worsening of their symptoms. Some of this effect may be brought about
by the fact that coffee, and especially tea, are known to interfere with the absorption of
antipsychotic drugs. Three controlled studies have been done in which psychiatric
inpatient units were switched from caffeinated to decaffeinated coffee and tea to see what
effect it would have on patient's symptoms. The first study reported an improvement in
patients' symptoms but the two more recent studies reported no effect whatsoever.
One thing that is clear about both smoking and caffeine intake among
individuals with schizophrenia is that more studies are needed to clarify the consequences
of the behavior. Until they are done I would suggest the following:
1. Recognize the strength of these addictions in many individuals with schizophrenia.
Obviously some reasonable maximum limits must be set, such as one pack of cigarettes and
four cups of coffee or colas per day, but setting limits is different from trying to
prohibit the behavior altogether. In my experience some mentally ill individuals who are
strongly addicted to nicotine and caffeine will fight, sell their clothes, and even
prostitute themselves to satisfy their addictions. Only masochists and martyrs pick fights
they know they cannot win.
2. Be aware that smoking and drinking coffee are among life's most pleasurable activities
for some individuals with schizophrenia. The fact that this is so is sad, but that does
not change the reality. We should be careful about taking away such pleasures unless we
are certain that the gains from doing so are worth it. The recent ban on smoking in
hospitals by the Joint Commission on Health Care Organizations did not take into account
the fact that for some individuals with schizophrenia these hospitals are their homes.
3. Demand that individuals with schizophrenia who smoke do so in a safe manner (e.g., not
in bed) and only in specified places. Nonsmokers have the right to not be exposed to the
known dangerous effects of second-hand smoke. Establish clear penalties for not adhering
to such rules, and enforce them.
4. Since cigarettes and coffee are very important to many individuals with schizophrenia,
they can be used to reinforce other important behaviors, such as taking prescribed
medication, as discussed below. This was once called bribery but is now called positive
reinforcement. It works.
Alcohol & Street Drugs
Alcohol and street drug abuse among individuals with schizophrenia
is a large and apparently growing problem. A community study done in the early 1980s
reported that 34 percent of individuals with schizophrenia abused alcohol, 26 percent
abused street drugs, and altogether 47 percent abused one or both of these. Studies of
this problem done over the past 30 years strongly suggest that the incidence of substance
abuse by individuals with schizophrenia has increased significantly. The severity of the
problem may vary considerably, from an occasional episode of abuse to almost continuous
abuse.
There are many reasons why individuals with schizophrenia abuse alcohol
and drugs. Probably the most important one is the same reason why individuals who do not
have schizophrenia abuse alcohol and drugs-it makes them feel good. Substance abuse is
endemic in the general population and there is no reason why individuals with
schizophrenia should be exempt. It is important to realize, therefore, that many
individuals with schizophrenia who are abusing alcohol and street drugs would also be
doing so if they had never become sick.
There are other reasons for alcohol and drug abuse that are specific to
schizophrenia. Substance abuse provides a social network and something to do for
individuals who are often socially isolated and bored. There is also evidence that some
individuals with schizophrenia are self-medicating with the alcohol or street drugs,
resulting in decreased anxiety, decreased depression, and increased energy. One recent
study identified specific subjective effects of alcohol, marijuana, and cocaine on
individuals with schizophrenia who had used the drugs. It is also possible that there is a
genetic connection between having a predisposition to schizophrenia and a predisposition
to alcoholism but the data on this question are not definitive.
Many of the consequences of alcohol and street drug abuse for
individuals with schizophrenia are identical to the general population and include
impaired family and interpersonal relations, job loss, loss of housing, financial debt,
medical problems, and arrests and jailings. In addition it has been shown that individuals
with schizophrenia who are substance abusers have many more symptoms, more frequent
violent episodes, a higher use of emergency psychiatric services, lower compliance with
antipsychotic medication, and twice as high a rate of rehospitalization compared to
nonsubstance abusers. A large number of them end up among the homeless population.
The treatment of individuals with schizophrenia who also are severe
substance abusers is quite unsatisfactory. Many are ping-ponged back and forth between the
mental illness treatment system and the substance abuse treatment system, rejected on both
sides. They are the patients nobody wants.
A limited number of model treatment programs have been created, usually
referred to as MICA (Mentally III Chemical Abuser) programs; some of these are listed in
chapter 8. Of special note are the Continuous Treatment Teams to promote integrated
services and continuity of care set up by New Hampshire, which have reported stable
remissions from alcoholism in over half of the treated patients with schizophrenia.
A variety of treatment approaches have been tried. The Twelve Step
self-help methods of Alcoholics Anonymous (AA) and Narcotics Anonymous (NA) are effective
for only a minority of individuals with schizophrenia, although some do better with a
lower-key modified Six Step program. A disadvantage of some such groups is that they
encourage total abstinence from all drugs, sometimes interpreted as including
antipsychotic medications as well. Individuals with schizophrenia also do not do well in
the confrontational groups promoted by some AA and NA chapters.
In some cases it is necessary to utilize compulsory monitoring
techniques to decrease alcohol and drug abuse in individuals with schizophrenia. This is
especially true for those patients who become violent or otherwise get in trouble when
abusing alcohol or street drugs. Urine testing can be used to ascertain street drug use,
and skin patches are being developed that change color if alcohol is ingested. Alcohol
abuse can sometimes be controlled by the use of disulfiram (Antabuse), which, if taken
each day, makes the person physically ill if they then drink alcohol during the ensuing 24
hours. Disulfiram can be used in individuals with schizophrenia but it tends to decrease
blood levels of antipsychotics, so the person may need to take a higher dose of the
antipsychotic while on disulfiram.
Families of individuals with schizophrenia who are abusing alcohol or
street drugs need to be aware of how common this problem is and learn to recognize it. A
useful clue is the disappearance of large amounts of the person's money that cannot be
accounted for. Making the substance abuser aware of the effects and consequences of their
substance abuse, setting and adhering to clearly defined limits, and utilizing compulsory
treatment modalities (often mandated by the courts for individuals who have pending
charges) are all important parts of a comprehensive treatment plan.
Should an individual with schizophrenia be allowed to drink at all?
Many clinicians say no. I would agree with this if the person has a history of violent
behavior or if alcohol appears to exacerbate the symptoms of their illness. However, if
these are not factors and the person has had no tendency to abuse alcohol, I know of no
reason why someone with schizophrenia should not have an occasional social drink if that
is something they enjoy doing and is part of their culture. Having a beer at the end of
the day with friends or having a glass of wine with dinner is for many people a
pleasurable part of life. People who have had the misfortune to have been afflicted with
schizophrenia should not be further penalized or deprived of small pleasures that are
available to other people unless there is a clear reason to do so. At the same time I
personally tell patients and their families to set clear limits on any alcohol intake
(e.g., two cans of beer or two glasses of wine or one ounce of alcohol per day) and to be
constantly alert for any signs of alcohol abuse.
Street drug use by persons with schizophrenia can be summed up in one
word. NO. For many patients, even marijuana may set off psychotic symptoms in an
unpredictable way, and it may take days to recover from them fully. One young man I
treated remained virtually symptom-free on medication except when he smoked marijuana; he
then become floridly psychotic for several days. Not every person with schizophrenia
reacts so dramatically, of course, but there is no way to predict which will do so.
Stronger drugs, especially PCP and amphetamines ("speed"), are like poison for
anyone with schizophrenia. Families should discourage their use in every way possible, and
should not allow a family member with schizophrenia in the home if street drug use is
suspected. This rule is absolutely mandatory if the person has a history of assaultive or
violent behavior; many of the homicides committed by those afflicted with schizophrenia
appear to occur following use of street drugs. Draconian measures to discourage street
drug use are perfectly legitimate, including requiring the person with schizophrenia to
periodically submit to urine testing for street drug use as a condition of living at home,
receiving support from the family, or remaining out of the hospital.
Sex, Pregnancy & AIDS
Sex is an important issue for most men and women and there is no
reason to think that it should be any different for individuals with schizophrenia.
Mentally ill individuals are commonly consigned to an asexual status in our imaginations
but that is a mistake. Individuals with schizophrenia run a wide range, from having
virtually no interest in sex to being preoccupied with it, the same range found in
individuals who do not have schizophrenia.
Studies suggest that approximately two-thirds of individuals with
schizophrenia are sexually active in any given year. One study of women outpatients
reported that 73 percent of them were sexually active; another study of men and women
outpatients reported that 62 percent were sexually active, including 42 percent of the men
and 19 percent of the women who had had multiple sexual partners within the past year. A
study of individuals in a psychiatric admissions unit similarly found that 66 percent had
been sexually active within six months, whereas a survey of long-term patients in a state
psychiatric hospital noted that "sexual activity was extensive and far-ranging at the
hospital."
Sexual activity for individuals with schizophrenia, however, is more
difficult than for individuals who do not have schizophrenia. Imagine how complex sex
would seem if you had delusions that the person was trying to harm you, or you were
hearing constant auditory hallucinations. Dr. M. B. Rosenbaum, in a sensitive article on
the sexual problems of persons with schizophrenia, described one patient who "vividly
described all the angels and devils in his bedroom telling him what and what not to
do" while having intercourse. Dr. Rosenbaum concluded: "It is hard for most of
us to 'get it together' sexually-how much harder for the schizophrenic with his or her
many very real limitations!"
Antipsychotic medications may also interfere with the sex lives of
individuals with schizophrenia. One study reported antipsychotic medication side effects
affecting sexual function in 30 to 60 percent of individuals taking the medications. These
effects included decreased libido, male impotence, orgasmic dysfunction, and female
menstrual irregularities. Such side effects are a major reason why some patients
discontinue taking their medications, although they usually do not verbalize this. A few
individuals have had their sexual lives improved by antipsychotic medications; for
example, one report described two heterosexual men who "would routinely engage in
continuous sexual activity for two to six hours while taking the medication at a properly
adjusted dose." Whenever sexual side effects are being evaluated, it is important to
inquire about sexual dysfunction prior to the onset of their illness as well. Since sexual
dysfunction is relatively common in the general population, some cases of sexual
dysfunction reported by individuals taking antipsychotics are pre-existing and not
connected to the antipsychotic.
Another problem is how to assess whether the patient is a consenting
adult or is being taken advantage of in the sexual situation. This usually applies to
women, although occasionally men will be taken advantage of by homosexuals. Questions
which the family should ask itself include: Is she able to say no to men in nonsexual
situations? Is her judgment reasonably good in other areas of her day-to-day functioning?
Is she discreet, which suggests good judgment, in her sexual encounters? Is she trying to
avoid men or is she seeking them out? Is she agreeing to sex primarily to obtain specific
payment, most often cigarettes or food?
Consultation with the patient's psychiatrist and/or nursing staff at
the halfway house or the psychiatric ward where the patient is known will often clarify
the consent issue for the family. The family of one woman, for example, became upset when
they found that she was having intercourse regularly at the halfway house and she told her
parents she was being taken advantage of. Discussion with half-way house staff established
that the woman was seeking out the sexual encounters, and her claim of being taken
advantage of was designed to assuage the disapproval of her parents. If a woman really is
being taken advantage of, however, increased supervision and restrictions in her activity
may be indicated. Women who consent to intercourse merely to acquire cigarettes or food
need a plan formulated by the families and psychiatric staff to provide these items
reliably, so the person with schizophrenia will be less tempted to prostitute herself.
Protection against pregnancy is another problematic area for
individuals with schizophrenia. According to one authority "the rate of children born
to psychotic women is estimated to have tripled since deinstitutionalization first began
in the United States." Condoms are the first choice for contraception because they
provide protection against AIDS as well as against pregnancy; however, many men will not
use them. Unplanned pregnancies are relatively common among women with schizophrenia; in
one study 31 percent of the women had had induced abortions. Two methods of long-term
contraception have been approved by the Food and Drug Administration and are now available
for use by women. One is injections of medroxyprogesterone acetate (Depo-Provera), which
need only be given every three months. The other is progestin implants beneath the skin
(Norplant), which last for five years. Both methods can produce some menstrual
irregularities but highly effective and satisfactory contraceptives for many women.
Ethical aspects of contraception in women with schizophrenia can also
pose major problems. Some women may not wish to use contraception for religious reasons.
Others may not wish to do so because they want to become pregnant. It is easy to empathize
with, for example, a 36-year-old woman who has just been released from the hospital after
fifteen years and wants to have a baby before it is too late; it is also easy to empathize
with the infant who is born into such a situation and who is totally dependent for care on
its mother. The genetic facts on a baby born to two persons with schizophrenia are
harsh-an estimated 46 percent of these children will eventually develop schizophrenia (see
chapter 10). It is also true that most people with schizophrenia have enough difficulties
looking after their own needs without the burden of a dependent infant. A study of 80
female "Chronic psychiatric outpatients" reported that only one-third of the 75
children they had home were being reared by the mothers. To assist in thinking through
ethical issues regarding contraception in women with schizophrenia, some guidelines have
been proposed by the Center for Ethics, Medicine and Public Issues at Baylor College of
Medicine.
Once a baby has been conceived, the couple and their families are often
caught between a rock and a hard place. Abortion and adoption should both be considered;
responsible decisions frequently involve consultation with the psychiatrist, family
physician, lawyer, religious adviser, and social worker. Often from such consultations a
consensus will emerge on the best course of action, and this sharing of decision making
will alleviate the burden on both the patient and the patient's family. It is known
that women with schizophrenia are less likely to seek prenatal care or to follow
instructions for it. Some studies have claimed that women with schizophrenia have an
excess number of complications of pregnancy and birth, but an extensive review of these
studies by Dr. Thomas F. McNeil, an acknowledged expert in this field, concluded that this
is not so.
The major dilemma of pregnancy in women with schizophrenia is whether
to take antipsychotic medications during the pregnancy. The safest advice regarding
medications to give any pregnant woman is not to take anything. That may be impossible for
women with schizophrenia. The antipsychotic drugs have been used by thousands of women
while pregnant and appear to be safe compared to many other drugs used in medicine. Recent
studies, however, have shown that these drugs occasionally cause malformations or
congenital anomalies to the growing fetus, so they should not be considered completely
safe and should be taken only when absolutely necessary. The most critical time for such
damage appears to be the first three months of pregnancy.
Given what is currently known, a reasonable plan for pregnant women
with schizophrenia is the following:
A. Stop antipsychotic medication for the first three months of pregnancy if she
can do so without a serious relapse.
B. Remain off medication for as much of the pregnancy as possible beyond three
months unless symptoms start to recur.
C. If it is necessary to restart the medication, use whichever medication she has
responded to in the past. There is insufficient data yet to say that one type of
antipsychotic medication is more dangerous than another during pregnancy.
D. Do not be heroic by avoiding medications at all costs. If the woman needs
medication, use it. Having a pregnant woman who is acutely psychotic has risks of its own
to both the woman and the fetus.
E. Discuss the issue of medication in detail before the pregnancy or as early in the
pregnancy as possible. Be certain that the woman's family and all concerned understand the
options. If the decision is made to stop medication, draw up a contract that specifies
that the woman will resume medication if the doctor deems it advisable. The contract must
be binding on the woman, even if she changes her mind because of her psychosis, so that
she can be medicated involuntarily if necessary; this is sometimes referred to as a
"Ulysses contract" after the Greek hero who ordered his sailors to tie him to
the mast and not to change course even if he ordered them to do so in response to the
Sirens' song.
Regarding the taking of antipsychotic drugs while breast feeding, this should not be
done. The drugs are transmitted in the breast milk if) small amounts but because the
baby's liver and kidneys are not mature the drugs may accumulate in the baby's body. Since
a woman who needs medication has the option of bottle feeding, it seems an unnecessary
risk to take.
AIDS is a new and important threat to the health of individuals with
schizophrenia. Surveys of the HIV positivity rate among admissions to state psychiatric
hospitals have ranged from 1.6 percent in Texas to 5.5 percent in New York, but these
surveys include patients with all diagnoses. The only survey done to date of HIV
positivity of psychiatric admissions specifically with schizophrenia reported that 3.4
percent were positive in a university hospital in New York City Studies on individuals
with schizophrenia regarding their knowledge about AIDS and its risk factors have reported
a remarkably poor understanding. In one study of women with schizophrenia, 36 percent said
that you can get AIDS by shaking hands, 58 percent said you can get it from a toilet seat,
and 53 percent did not know that condoms help prevent AIDS. A 1993 study of condom use in
the previous six months among individuals with schizophrenia found that condoms had been
consistently used by only two of eight individuals who had had a single sexual partner and
one of 15 individuals who had had multiple sexual partners. In another study, one-third of
seriously mentally ill individuals had been treated for a sexually transmitted disease, a
major risk factor for HIV transmission. Clearly we are just seeing the beginning of a
major AIDS problem among individuals with schizophrenia and other major psychiatric
illnesses.
What can patients and families do about the problems connected with
AIDS? Open discussion, education, and the use of condoms are obvious needs and should be
given high priority. An AIDS education program for patients with serious mental illnesses
has been developed by Dr. Robert M. Goisman and his colleagues at the Massachusetts Mental
Health Center. The AIDS epidemic is upon us and will not exempt individuals with
schizophrenia.
Medication Non-Compliance
Medication noncompliance by individuals with schizophrenia is a major
source of frustration for families and the single biggest cause of relapse and
rehospitalization. It is extremely common, with studies showing that approximately 70
percent of patients are noncompliant with medication by the end of the second year
following hospitalization. It is also extremely costly; one research group estimated that
medication noncompliance for schizophrenia costs approximately $136 million per year.
Medication noncompliance is also found in other medical conditions, such as hypertension,
heart disease, rheumatoid arthritis, and tuberculosis, but it appears to be of greater
magnitude in schizophrenia.
There are three principle reasons for medication noncompliance in
schizophrenia: lack of insight, medication side effects, and a poor doctor-patient
relationship
Lack of Insight:
Impaired insight has been noted to be a symptom of schizophrenia for almost
two centuries. In 1919, for example, Emil Kraepelin noted that "understanding of the
disease disappears fairly rapidly as the malady progresses in an overwhelming majority of
cases." One study of insight estimated that 81 percent of individuals with
schizophrenia have significantly impaired insight, but two recent studies, carried out in
New York and London, concluded that the percentage is approximately 50 percent. There is
recent evidence that the impaired insight found in some individuals with schizophrenia is
part of the disease process affecting the frontal lobes, i.e., the area of the brain we
use for insight into ourselves is not functioning properly. There is also evidence that
antipsychotic medications do not improve insight in most patients, even though other
symptoms, such as delusions and hallucinations, may be improved.
One of the consequences of lack of insight is completely predictable-if
a person does not believe he/she is sick, why take medication? In one study of
schizophrenia, for example, the number of patients who were compliant with medication was
twice as high among those with insight compared to those without insight. It is therefore
not surprising that several studies have also reported an inverse correlation between
insight and rehospitalization rates. Lack of insight produces medication noncompliance,
which leads to relapse and rehospitalization.
Medication Side Effects
A second major reason for medication noncompliance among individuals
with schizophrenia is the side effects of the medication. As expressed by Esso Leete who
has schizophrenia: "Unfortunately the side effects of antipsychotic medications can
often be more disabling than the illnesses themselves, and I have even experienced side
effects from the pills I took to control the side effects of the antipsychotic
medications."
Studies have shown that many psychiatrists are not clinically astute in
their ability to diagnose side effects. In one study of psychiatrists, for example,
"the major finding was a high rate of clinical under recognition of all major
extrapyramidal syndromes." Another study reported that "psychiatrists misjudged
the bothersomeness to patients of 24 percent of side effects and 20 percent of
symptoms." Among the most troubling side effects of antipsychotic medication are
akathisia (feelings of restlessness), akinesia (decreased spontaneity), and sexual
dysfunction. An early study of drug refusal by patients with schizophrenia found that
"the reluctance to take antipsychotic medication was significantly associated with
extrapyramidal symptoms-most notably a subtle akathisia." The author noted that the
akathisia could change over time "so that a patient could be optimally medicated on
one visit, and experience an akathisia or other EPI [extrapyramidal involvement] on the
same dosage of phenothiazines two weeks later." Giving the patient an extra supply of
antiparkinson drugs to take on an as-needed basis is a suggested solution. Akinesia is
also especially difficult for clinicians to appreciate because it is primarily a
subjective experience and may be confused with depression.
Poor Doctor-Patient Relationship
A third major cause of medication noncompliance in individuals with schizophrenia is a
poor doctor-patient relationship. Arriving at the best antipsychotic medication and the
right dose of that medication for any given individual should be a shared undertaking
between the doctor and patient. Dr. Ronald Diamond, in a lucid paper on the subject, says
that "it is still important to listen to what patients say and to take seriously
their experience with their medication." Betty Blaska, writing from a consumer's
point of view, makes the same point: "Many of the mistakes [of the psychiatrists]
previously described corm down to one thing: a refusal to see the consumer as an expert on
his or her illness. The person with schizophrenia is the authority on his
schizophrenia."
Instead, the norm for doctor-patient relationships in American
psychiatry is complaints such as "I have this side effect but my doctor won't listen
or take it seriously." One reason for this problem with doctor-patient relationships
is that many of the psychiatrists in American public sector jobs were trained in other
countries where the doctor is considered to be the authority and patients are not supposed
to question his/her advice or judgment. Another reason is that the norm in many community
mental health programs is for the psychiatrist to see the patient for 15 minutes every two
or three months to check the medications; such a time frame precludes discussion of any
except the most severe side effects.
There are other reasons for medication noncompliance in individuals
with schizophrenia. Men especially do not like to take medication of any kind because it
impugns their masculinity and elicits fears of dependency. Other patients may view
medication noncompliance as exciting fisk-taking behavior, like driving too fast or
hang-gliding. Others do not take medication as a way to deny their illness; for them,
taking a pill each night is a reminder of their misfortune and the parts of their lives
that have been lost. Dorothy Minor illustrated such reasoning very nicely:
I did not want to believe I was sick, failing to the false logic of medication. Instead
of thinking, "I am sick; therefore I need medication," I thought, "I am
taking medication; therefore I am sick, and if I stop taking medicine, I will be
well."
Still other patients refuse to take medication because of their
delusions, which may be either grandiose (e.g., a belief that you are all powerful and
therefore do not need the medication) or paranoid (e.g., a belief that people are using
the medication to poison you).
What are the answers to medication noncompliance? It is important for
families and mental illness professionals to recognize how common noncompliance is,
including the high frequency of surreptitious noncompliance when others think the patient
is taking his/her medicine. It is also important to ascertain the reasons for the
noncompliance, because solutions to the problems of lack of insight, medication side
effects, a poor doctor-patient relationship, and delusional thinking are quite different.
Better education of the patient should be helpful in most cases. One
recent study of psychiatric patients' knowledge of their medication at the time of
hospital discharge found that 37 percent of the patients did not know why they were
supposed to take their medication and 47 percent did not know when to take it. Part of
this is undoubtedly owing to the cognitive impairment of the person secondary to the
illness. Using pill containers that have separate compartments for each day and using once
daily dosing also simplifies medication taking. Using injectable depot fluphenazine
(Prolixin) or haloperidol (Haldol), which only has to be given every one to four weeks,
can also be very helpful when indicated.
The doctor-patient relationship can be improved if the psychiatrist is
willing to accept the patient as a partner, not as an underling to carry out orders.
Having the patient keep a daily diary of side effects and giving the patients some
autonomy to increase or decrease medication dosage as needed can both be helpful.
Medication should be approached as a joint venture with risks and benefits weighed against
each other. The risks of medication noncompliance include rehospitalization, violence,
jail, homelessness, and suicide, whereas the benefits include no side effects. The risks
of medication compliance include side effects, whereas the benefits include living a more
normal life and achieving a modified form of some of the person's original life goals.
For individuals who lack insight, none of the above may be effective in
persuading them to take medication. Positive reinforcement is always worth trying and
coffee and cigarettes may be sufficient. A higher stakes positive reinforcement is to have
the clinic or case manager become the person's payee for his/her Supplemental Security
Income (SSI) check and then to give the person his/her money when the individual comes to
the clinic to get his/her fluphenazine or haloperidol injection or to give the individual
an allowance upon taking his/her oral medication each day. Although this is not strictly
legal in some states, it has become a very common practice and would probably be upheld by
most courts. In 1988, for example, the U.S. Third Circuit Court of Appeals ruled that a
man with borderline mental retardation and epilepsy was not entitled to receive his
disability payments because he was noncompliant with the medication he needed to control
his epilepsy.
For individuals who lack insight and in whom positive reinforcement is
not effective, coercion is the only remaining option. Coercing an individual with
schizophrenia can legally be done in one of three ways:
Conditional Release
When the person leaves the hospital following an involuntary admission he/she
can be put on extended or conditional release in most states. Continuing to live outside
the hospital becomes dependent on taking medication and following other treatment plans.
Conditional release is used commonly for individuals who have legal charges against them,
and is similar to being on parole. New Hampshire his used conditional release most
extensively and most successfully, for individuals with serious mental illnesses.
Conservatorship or Guardianship
Conservators or guardians are court-appointed individuals who act on behalf
of persons who are mentally disabled to protect their interests. They are used widely for
individuals who are mentally retarded but, except for a few states, such as California,
are used much less frequently for individuals who are mentally ill. In some states the
conservator can order the mentally ill individual to take medication and arrange for
hospitalization if the individual fails to comply. Studies of conservatorships for people
with schizophrenia who lack insight have found it to be an effective mechanism in helping
to stabilize the person.
Outpatient Commitment
Whereas a conditional release is an extension of an involuntary inpatient commitment, an
Outpatient commitment is a separate legal proceeding. The court in effect says that the
mentally ill person can live in the community only as long as he/she complies with the
treatment plan, which almost always includes taking medication. Two-thirds of all states
have some provision for outpatient commitments, but it is only used frequently in 12 of
those states (Arizona, Iowa, Kansas, Michigan, Nebraska, North Carolina, North Dakota,
Rhode Island, Utah, Vermont, Washington, and Wisconsin) and the District ol' Columbia.
Studies carried out in Arizona, North Carolina, and the District of Columbia have shown
outpatient commitment to be highly effective in reducing the rehospitalization rate.
For individuals with schizophrenia who are being coerced to take
medication because of their lack of insight, a common problem is how to monitor whether or
not they are actually taking the medication. Using injectable depot fluphenazine
(Prolixin) or haloperidol (Haidol) is the obvious solution for patients who respond to one
of these medications. Many antipsychotics also come in liquid form that can be mixed with
juice and the person can be observed swallowing it. Patients taking lithium pills can be
monitored by taking blood samples and checking their lithium level. For individuals taking
other kinds of pills or capsules, it is possible to mix substances such as riboflavin or
isoniazid with the medication and then take urine samples to see whether the person is
taking the medication. These measures have been used to assess medication compliance in
other diseases, such as tuberculosis, but to date have not been used to routinely monitor
medication compliance in individuals with schizophrenia.
For many mental illness professionals and other people, coercive
treatment for individuals with schizophrenia is anathema. It contravenes our beliefs about
civil liberties, the rights of individuals to privacy, and the freedom of speech and
thought. The American Civil Liberties Union and the Mental Health Law Project in
Washington, D.C., have staunchly opposed laws allowing coerced treatment and have obtained
court rulings in some states that have made coerced treatment virtually impossible.
What these well-meaning but misguided advocates have failed to
understand is that approximately half of all individuals with schizophrenia have impaired
insight. When such individuals refuse medication they are doing so as part of illogical or
irrational thought process. The right to be free of the symptoms of a brain disease must
be weighed against the right to privacy. As articulated by one observer, psychiatric
patients "will suffer if a liberty they cannot enjoy is made superior to a health
that must sometimes be forced on them." The rights of the individual must also be
weighed against the needs of the person's family and society as a whole, especially in
those individuals who become assaultive or violent when not taking medications.
Underlying much of the debate over t is issue is, many suspect,
long-standing acrimony between the legal and the psychiatric professions. And since most
judges are graduates of the former, the decisions to date have bent significantly toward
the lawyers. This would be harmless enough if we were dealing only with a urinating
contest among adolescent boys, but in fact many patients have been and are being hurt by
legal decisions that ostensibly protect their rights but in reality do so at the expense
of their health. As succinctly summarized by a prominent New York State legislator:
"The state must begin now to reorder its priorities for the mentally ill; instead of
first guaranteeing a client's right to refuse treatment, we must first guarantee his right
to receive it."
I myself come down strongly on the side of giving patients medication
against their will if they need it. Checks and balances should certainly be built into the
system to protect the patient in the same way that involuntary hospitalization should be
periodically reviewed. But the fact is that persons with schizophrenia are really sick,
and to withhold medication usually hurts rather than helps them. I would urge those who
advocate an elaborate court proceeding before involuntary medication can be given to spend
a day on an acute psychiatric admission ward where the patients have not been medicated;
it will be an unforgettable experience.
Assaultive And Violent Behavior
Assaultive and violent behavior by some individuals with
schizophrenia has become an increasing problem in recent years. Studies have made clear
that most individuals with schizophrenia are not assaultive or violent but that a small
number of them are. The common denominators of those who are assaultive and violent are
abuse of alcohol or drugs and noncompliance with antipsychotic medication.
Two studies of families who belong to the National Alliance for the
Mentally III (NAMI) have demonstrated a high incidence of assaultive and violent behavior.
In a 1986 survey 38 percent of the families "reported that their ill relative was
assaultive and destructive in the home either sometimes or frequently." A 1990 NAMI
survey of 1401 families reported that within the preceding year 10.6 percent of the
seriously mentally ill individuals had physically harmed another person and another 12.2
percent had threatened harm.
These findings are consistent with other studies of assaultive and
violent behavior among individuals with serious mental illnesses. Rabkin reviewed studies
done in the 1960s and 1970s and reported that for patients discharged from public mental
hospitals "attest and conviction rates for the subcategory of violent crimes were
found to exceed general. population rates in every study in which they were
measured." In another study, it was found that 15 of 20 individuals who were arrested
for attempting to push people in front of subway trains in New York City had a diagnosis
of schizophrenia. Steadman et al. also followed up patients discharged from mental
hospitals and reported "that 27 percent of released male and female patients report
at least one violent act within a mean of four months after discharge."
Other surveys of mentally ill individuals living in the community have
reported similar findings. A methodologically excellent study by Link et al. in New York
City found that former psychiatric patients were two to three times more likely than other
community residents to have used a weapon or hurt someone badly and that most of the
excess violence was committed by those individuals who were psychiatrically sickest and
presumably not taking medication. Similarly, in the five site Epidemiologic Catchment Area
(ECA) study carried out by the National Institute of Mental Health, individuals with
schizophrenia reported having used a weapon in a fight more than 20 times as often as
individuals with no psychiatric disorder. There was also found to be a high correlation
between violent behavior in schizophrenia and concurrent alcohol or drug abuse.
It should be emphasized that America is a violent society and, within
this broad context, the contribution of individuals with schizophrenia to total violence
is very small ' It should also be reiterated that most individuals with schizophrenia are
not assaultive or violent. However, a minority of individuals with schizophrenia are
assaultive or violent and the problem will not go away simply by repeating outdated
mantras to the contrary.
The three best predictors of assaultive and violent behavior in
individuals with schizophrenia are concurrent alcohol or drug abuse, noncompliance with
medication, and a past history of being assaultive or violent. Families that are faced
with this problem must learn to recognize cues of impending violence and pay attention to
them. If an individual with schizophrenia becomes assaultive or violent it is best to stay
calm (listen mostly, but respond in a calm and sympathetic manner), keep physically
distant from the person, and call for help and/or the police as necessary.
Most assaultive and violent behavior can be prevented with planning. If
there have been one or more episodes in the past, the family should have safe-proofed the
house (e.g., sharp knives are kept locked up), asked for a review of the person's
medication, explored options for improving medication compliance (e.g., outpatient
commitment), made an effort to reduce alcohol or drug abuse by controlling the person's
funds, and conveyed very clearly to the person the precise consequences (e.g., the person
will no longer be allowed to live at home) if assaultive or violent behavior recurs. If it
does, then it is mandatory to carry out those consequences.
A family within which the patient has been assaultive or violent is
particularly poignant and lives in a special circle of Hell. Its members are often afraid
of the patient, yet at the same time feel sorry for him/her and recognize that the
behavior was a product of abnormal brain function. The ambivalence inevitably felt by the
family members is formidable; fear and love, avoidance and attraction rest uneasily side
by side. Afterward, no matter how well the patient gets, no matter how much time elapses,
the memory of the past assault or violence never fully recedes.
Suicide
The largest single contributor to the excess death rate in
individuals with schizophrenia is suicide. A recent review of studies done on this subject
concluded that "suicide is the number one cause of premature death among
schizophrenics, with 10 to 13 percent killing themselves." This rate is just slightly
lower than the 15-17 percent suicide rate reported in contemporary studies of
manic-depressive disorder. Among individuals in the general population the suicide rate is
approximately I percent.
Depression represents the single most important cause of suicide among
persons with schizophrenia, just as it does among persons without schizophrenia. The
majority of patients will experience significant depression at some point during the
course of their illness; this realization should lead psychiatrists to remain alert for
depression and to treat it more aggressively with antidepressant medication (see chapter
7). Depression may arise from the disease process itself (i.e., the schizophrenia affects
the brain chemistry so as to cause depression), from the patients' realization of the
severity of their illness (i.e., as a reaction to the disease), or occasionally as a side
effect of medications used to treat schizophrenia. Depression must also be differentiated
in schizophrenia from the slowed movements (akinesia) and slowed thought processes which
may be symptoms of the disease.
Most persons with schizophrenia who commit suicide do so within the
first ten years of their illness. As might be expected, approximately three-quarters of
them are men. Those at highest risk have a remitting and relapsing course, good insight
(i.e., they know they are sick), a poor response to medication, are socially isolated,
hopeless about the future, and have a gross discrepancy between their earlier achievements
in life and their current level of function. Any patient with these characteristics and
associated depression should be considered a high risk for suicide. The most common time
for suicide is during a remission of the illness immediately following a relapse.
Occasionally persons with schizophrenia will commit suicide
accidentally in a stage of acute psychosis, e.g., they may jump off a building because
they think they can fly or because voices tell them to do so. Most suicides in
schizophrenia are intended, however, and are often carefully planned by the person. Like
all clinicians who have taken care of large numbers of patients with schizophrenia, I have
known several who eventually committed suicide, and such deaths evoke great sadness.
There are other suicides, however, which evoke not only sadness but
anger. These are the preventable ones-the patient who is treated inadequately with
medications and then told that nothing more can be done, or the patient who is doing
nicely on medication until another doctor reduces it and begins insight-oriented
psychotherapy. I wish I could say that these suicides were rare occurrences but they are
not. The high suicide rate in schizophrenia is in part due to our inadequate care system
(or, more accurately, nonsystem) on which these patients are forced to rely.
What can families and friends of individuals with schizophrenia do to
minimize the risk of suicide? The most important thing is to be alert for it, especially
in an individual who is depressed and who has recently recovered from a relapse. Past
suicide gestures or attempts are an important predictor of future attempts. Expressions of
guilt and worthlessness, hopelessness about the future, an unwillingness to make plans for
the future, and putting one's affairs in order (e.g., giving away prized possessions or
making a will) are all red flags that may indicate serious suicidal intent.
Families and friends should then ask and act. Ask the person if he/she
is planning to commit suicide, e.g., "I know you have been depressed recently and I
am very worried about you. Are you planning to harm yourself?" Some people are afraid
to ask about suicide because they fear it will put the idea into the person's head. This
is not true, and often the person is relieved to be able to talk about suicidal thoughts
and plans. Most people who are planning to commit suicide have mixed feelings about it. Do
not directly argue with the person about committing suicide but rather point out the
reasons for not doing so. One excellent reason at this time is the promise of more
effective medications with fewer side effects that are likely to become available in the
next few years.
Act by taking away the person's planned modalities for committing
suicide (e.g., a gun or pills) and similar weapons in the immediate environment. Act also
by ensuring that the person's treating psychiatrist is aware of the person's suicidal
intentions and urge him or her to aggressively treat the person's depression. If the
psychiatrist is reluctant to act, put your advice and admonitions in a registered letter
to the psychiatrist, if necessary, adding that you have consulted your lawyer about the
case. The psychiatrist will get the message. In some cases involuntary commitment to a
psychiatric unit may be necessary to ensure the person's safety until the antidepressant
medication can take effect.
Despite the best efforts of family and friends, however, some
individuals with schizophrenia will commit suicide. If family and friends have done what
they can do to help, they should not feel guilty or blame themselves. Suicide in
schizophrenia is the final and ultimate measure of the tragedy of this disease.
A Mood Apart- Peter C. Whybrow
Chapter Two- Darkness Visible, pp. 22-42.
Try, for a moment, to imagine a personal world drained of emotion, a
world where perspective disappears. Where strangers, friends, family, and lovers are all
held in similar affection, where the events of the day have no obvious priority. There is
no guide to deciding which task is most important, which dress to wear, what food to eat.
Life is without meaning and with meaning has gone motivation. This colorless state of
being--the very antithesis of the emotional outpouring experienced in grief--is exactly
what happens to some victims of severe melancholic depression. Emotion drains away to be
replaced by a visceral void.
Claire Dubois was such a victim. Indeed, her experience was so
debilitating that she had come to question the worth of life itself. Claire's first visit
to my office was in the dead of winter--during that week between Christmas and the New
Year, which is such a bad time for depressed people in the middle of a particularly bleak
and snowy period. It was the I970s, when I was Professor of Psychiatry at Dartmouth
Medical School. Elliot Parker, Claire's husband, had telephoned the hospital desperately
worried about his wife, who he suspected had tried to kill herself with an overdose of
sleeping pills. The family lived in Montreal, but were in Maine for the holidays, and Mr.
Parker knew he needed some immediate help. I agreed to see them that same afternoon.
Before me was a handsome woman approaching fifty years of age. She sat
mute, with brows knitted and eyes cast down, holding her husband's hand, but without
apparent anxiety or even interest in what was going on. In response to my questioning she
said very quietly that it was not her intention to kill herself but merely to sleep.
Everything was hopeless. She could not cope with daily existence; she felt occasionally
disoriented and life didn't mean anything. There was nothing to look forward to and she
was of no further value to her family. She wondered whether she might have a brain tumor
because she felt so strange. She could no longer concentrate sufficiently to read, which
had been her greatest passion. Before, she had always been able to escape into her books.
Her voice had trailed off; I could hardly hear her. I remember distinctly how she was
staring past me, through the long office windows, apparently focusing on a small stand of
maple trees, silhouetted black against the snow in the filling light of late afternoon. I
asked her for her thoughts. "I feel no more than those trees, frozen there in winter.
Things have dropped from me. I have outlived certain desires; I have lost friends, some by
death ... others through the sheer inability to cross the street." She looked at me
for the first time. "The last part's not original; it's from Virginia Woolf, from her
book The Waves, I think. But it does sum up the way I am. Feeling has drained from every
crevice of my life, even from my favorite literature."
In her severe depression, Claire was describing what psychiatrists call
anhedonia--from hedone, the Greek word for pleasure. Anhedonia means in literal
translation "the absence of pleasure," but in fact in its most severe form
anhedonia becomes an absence of feeling, a profound blunting of emotion such that life
itself loses meaning. Anhedonia can accompany morbid grief, as when Hamlet, stricken by
the brutal murder of his father, questions the meaning of life: "How weary, stale,
flat, and unprofitable seem to me all the uses of this world!" But this lack of
feeling, especially of pleasure, is most frequently present in melancholia. Melancholia
lies on a continuum with depression, extending the illness to its most disabling and
frightening form. It is a depression that has taken root and grown independent, distorting
and choking the accustomed feeling of being alive.
In a letter she wrote me later, Claire Dubois described the experience
very well: "It is like filling into a deep black pit; or being drawn down into a dark
vortex led by only a pinpoint of light, which growing smaller and smaller, finally
flickers and goes out. With it goes all feeling. There is no despair for there is no
meaning; all is as white as the absence of color, as black as all color. It is a state of
nonbeing; there is no cure, there is no illness. I was convinced that I was dead,
emotionally dead. I have no words to describe this thing that was totally alien to my life
experience. I see it now as comparable to the astronomer's discovery of black holes. My
compulsion to give it description and a name is very strong but the closest I can come is
that of a living void; of being condemned to life. And as the ability to live recedes, the
most terrifying part of all is that it leaves a certain serenity. At that point only the
idea of death itself gives hope."
For most of us, as social animals, a meaningful existence is based on
our interaction with other people, with ideas, and with the physical world in which
together we live and work. For Claire Dubois in her melancholic state, this normal
interaction had been lost. Deprived by the severe depression both of feeling for her
family and of the intellect required to retreat into her abstract world of literature, her
existence had become meaningless--a "living void." Claire had become preoccupied
with this shutdown of feeling. Closer questioning, however, revealed that she had also
been experiencing changes, so characteristic of melancholia, in the body's housekeeping
rhythms--disturbances of her appetite, sleep, and energy. This lost harmony had crept upon
her slowly, indeed so slowly that she had hardly registered the change until upon looking
back she was forced to confront the wreckage of her daily existence.
Claire's experience is not uncommon. Even the most dramatic forms of
manic-depressive illness melancholic depression, in their early stages of development, can
be notoriously difficult to pin down and are frequently ignored or mistaken for something
else. This holds true for professionals--who should know better--and for family members as
well. The clues are there but they are inconsistent, varying in number and in severity
over time. Those who suffer, and their friends and relatives, and the physicians and
mental health professionals involved, all experience the same confusion in the early
stages of mood disorder. It is very difficult to differentiate the changes in the person,
seen later as illness, from those naturally present in the emotional ebb and flow of daily
life. This is a major reason why it sometimes takes so long to identify depression as
something alien and pathological.
So it was for Claire Dubois and her husband, Elliot Parker. In her own
mind and in his, the whole thing had begun after a serious automobile accident which had
occurred the winter before. On a snowy, icy evening in Montreal, while on her way to pick
up her teenage children from choir practice, her car had slid off the road and down the
embankment. The injuries she sustained were miraculously few but included a concussion
from her head hitting the windshield. She was admitted to the Royal Victoria Hospital, and
after a careful evaluation by the neurosurgeons, she was declared very fortunate and in
good health. However, despite this good fortune, she began to experience headaches in the
weeks following her discharge. Her sleep became fragmented, with frequent awakenings
especially in the early morning hours. With this insomnia came an increasing fatigue. The
family doctor prescribed sleeping medications but despite increasing doses had only
marginal effect. Eating held little attraction and she began to lose weight. She was
irritable and inattentive, even to her children. Completely out of character, she began
fighting with her husband.
Elliot Parker was bewildered by the changes he was witnessing. Claire
had become a different person. As far as he could tell, his wife had not been herself
since the accident. Some days she failed to get out of her dressing gown, and was in bed
when the children returned home from school. This annoyed him as unnecessary and a very
poor model for their daughters, especially when she became argumentative and angry in
front of them. He employed somebody to help in the house, hoping to relieve her burden of
daily chores. Now there wasn't a great deal for Claire to do, but to Elliot's surprise
this seemed only to make things worse. He was perplexed. How could Claire want for a
better life?
Claire spent most of the day reading. Her favorite author was Virginia
Woolf, with whom she expressed a kinship--an affinity with "a similar tormented
soul." Through the day she began sipping steadily from a glass of wine, a habit she
had acquired during her solitary teenage years in France. By the spring, Claire was
complaining of "dizzy spells." She was seen by the best specialists in Montreal,
including Wilder Penfield, the famous neurosurgeon and a friend of the family, but no
explanation could be found. The summer months, when she was alone in Maine with her
children, brought minor improvement, but with the onset of winter, the disabling fatigue
and insomnia returned. Elliot found himself distraught and angry, wrestling inside with a
rising sense of impotence and hopelessness. The medical profession, and his own wits, had
failed them. In the words of the family doctor, Claire had been reduced to "a
diagnostic puzzle." Then, at the very worst time, in the middle of the Christmas
holidays, came the suicide attempt.
Why should sliding off a stretch of familiar, but icy, road have
precipitated Claire Dubois into this black void of despair? Many things can trigger
depression. In a sense, it is the common cold of emotional and mental life. In fact,
depression can literally follow", in the wake of the flu, it can herald the beginning
of a serious physical illness like cancer, be a sign of a hormonal disturbance such as
thyroid disease, or be an early symptom of Alzheimer's dementia. Just about any physical
trauma or debilitating illness, especially if it lasts a long time and limits our physical
activity and social interaction, increases our vulnerability to depression. As I have
already indicated, loss, the reversal of social fortune, or damage to cherished hopes can
also usher us along the path. But only a minority among us, perhaps 8 or 10 percent,
travel far enough to experience the torments described by Claire Dubois. What determines
this vulnerability to severe depression is complex. It is not a single gene that we
inherit from our parents, although indeed, as I shall explore later, genetic inheritance
can increase the risk. Similarly, isolated childhood experiences are rarely capable of
scaring us so deeply that we hover forever on the edge of despair. Rather, what makes us
vulnerable over time is the subtle interplay of both these elements: what we inherit, and
what we experience. And particularly, in what we experience, it is the meaning of
individual events and the control we have over them that appears to be most important.
To be trapped in uncertainty, alone, and without purpose or control, is
the nightmare of our species. Throughout life, human beings strive for meaning and for a
stable future in which change can be predicted and controlled to serve a personal destiny.
Transient episodes of sadness and depression are ubiquitous, and are important points of
emotional reference as we navigate the complexities of everyday life. These moments of
common experience are entirely distinct, however, from the illness of melancholia. The
roots of serious melancholic depression grow slowly over years and are usually shaped by
many separate events, each of which combines in a way unique to the individual. In some, a
predisposing shyness is amplified and shaped by adverse circumstance, such as childhood
neglect, trauma, physical illness, aging, and so on. In others who experience mania and
depression, there are specific genetic factors that determine the shape and course of the
disturbance, once triggered. But even in manic depression the environment plays a major
role in determining the timing and frequency of illness.
The resilience and freedoms we have at our disposal to adapt to
everyday challenge are continuously changing, and highly dependent upon such mundane
matters as physical health, social circumstance, and whether we are male or female. Events
too vary in their impact, depending upon the threat or opportunity they present, the
control we have over them, and their personal meaning. The death of Ginger, an old and
favored family cat, had a very different meaning for me--and therefore a different
emotional impact--than it did for my daughters who had grown up with him. Significant also
is whether there is anybody around to share the burden--to provide comfort, support, and
offer explanation. In short, the only way to understand what has the power to kindle and
precipitate a depression is to know the personal story that lies behind the experience and
the illness.
Claire Dubois had been born in Paris. Her father, a politician and
businessman, was much older than her mother, and had died of a heart attack shortly after
her birth. She never knew him except through the stories that were told by her mother and
other family members. A stepbrother--from her father's previous marriage--insisted that
Claire's mother, an actress, had been a long-standing mistress of Monsieur Dubois, and
that his father had only agreed to marry her when she found herself pregnant with Claire.
He also suggested, as Claire entered adolescence, that she might consider performing the
same services for him. Claire considered and refused; she preferred books. Claire was by
necessity a solitary child, and no stranger to grief and loss. She had discovered
literature at an early age. Books offered a fairy-tale adaptation to the reality of her
daily life. Indeed, one of her fondest memories of adolescence was of lying on the floor
of her stepfather's study, sipping a glass of watered wine and reading Madame Bovary. Her
mother had remarried when Claire was eight, but drank heavily and was in and out of
hospital with various ailments until she died in her late forties, probably of cirrhosis
of the liver (although in the family story it was pneumonia). The other good thing about
adolescence was Paris. Her stepfather was a lecturer in art history at the Sorbonne and
the family lived in the respectable quarter of Montparnasse, near the Luxembourg Gardens.
Within reasonable walking distance were all the bookstores and cafes that any aspiring
young woman of letters could desire, and Claire made full use of them. These few blocks of
the city became her personal world. Everybody, be they bookseller, street vendor,
concierge, or gendarme, knew the blue-eyed Claire Dubois; the people of the neighborhood
became her extended family.
However, with the increasing threat of war in Europe, this life that
Claire had created so carefully collapsed. Just before the outbreak of hostilities she was
loaded onto a boat bound for Canada, to live with a stepsister in Montreal--a woman some
twenty years older than herself--while she attended McGill University. There she spent the
war years, lonely and unhappy, avidly consuming every book she could lay hands on.
Flaubert, Proust, Chekhov, and Virginia Woolf became her closest friends--perhaps her only
friends. Her mother died in Paris, but she hardly noticed. She majored in English and
became a freelance editor to supply the little money she required. Then, shortly after the
war ended, on impulse she returned to Paris at the invitation of a young man whom she had
met when he was studying in Montreal. He proposed marriage and Claire accepted. She had
sorely missed France; living in Canada was not the same. Because of the war, her departure
had been precipitous and painful and she yearned for the familiar Paris of her youth. Her
new husband offered her a sophisticated life among the city's intellectual elite, but
after only ten months he declared that he wanted a separation. Claire was never able to
fathom the reasons for his decision, neither then nor subsequently. Her only explanation
to herself was that he had discovered some deep and fatal flaw in her that he would not
reveal. To complicate matters she was pregnant, but after six months of further turmoil
she agreed to a divorce. She returned to Montreal, to the family of her stepsister and to
her old job as an editor. There her first child, a daughter, was born.
Much saddened by her experience and considering herself a failure, she
entered psychoanalysis and her life stabilized. She began writing the first of her several
destined-to-be-unpublished plays. For the next five years she lived in her stepsister's
household with her growing daughter. Then, at the age of thirty-three, "in a
desperate effort to create some sort of future," Claire Dubois married Elliot Parker,
a wealthy business associate of her brother-in-law. Approaching fifty, and in his own mind
a confirmed bachelor, Mr. Parker was somewhat surprised but delighted with the match.
Claire rapidly had two more daughters.
Claire had initially valued the marriage. Her husband came from a
Scots-English background, and Claire felt that his lack of demonstrative interest in her
was probably a cultural thing, reinforced by his many years alone. His work kept him busy
and frequently out of the country but she made a life for herself with her growing
daughters. The sadness of her earlier years did not return, although at times she drank
rather heavily, much to the consternation of her husband, who felt that her behavior when
drunk was socially inappropriate. This led to a cooling of the already tepid relationship.
With her daughters now growing rapidly, Claire proposed that the family should live in
Paris for a year. The children could be enrolled in French schools and learn something of
the true French culture that Claire valued as part of herself, but which she felt her
daughters were missing by growing up in Montreal. Her husband grudgingly agreed. With the
rekindled enthusiasm of youth she eagerly planned the year in every detail. "The
children were signed up for school; I had rented houses and cars; we had paid the
deposits. We had our ship cabins booked from Montreal; we were going to Florence and to
the Alps for a couple of months during the winter. I had maps of routes we would take,
pensions that we would stay in. I had budgets the details of which would surprise you. And
then one month before it all was to begin Elliot came home one evening to say that money
was tight and it couldn't be done. "I remember crying for three days, but after that
it was just another loss like the many I had experienced in childhood--like the promises
mother had made that she never followed through on--and I just dismissed it. I felt angry
with Elliot but totally impotent. I had no allowance, no money of my own, and absolutely
no flexibility." Four months later Claire slid off the road and into a snow bank.
Placed in the context of her life story, the roots of Claire's
melancholic depression become clearer. We begin to understand, through this familiar
construction, something about the person--the private self--of Claire and the personal
world in which she really lives. Stories and storytelling are integral to being human.
Within the privacy of our own heads we experience life as a series of interrelated
stories, which when collected together become the anthology of our personal experience.
These are genuine narratives, constructions that link factual events and episodes of
emotional significance. As we tell ourselves these stories we give important people,
places, and events their own special meaning. Paris becomes the magic city of our dreams,
embodying hope. That tragic events have occurred there is forgotten, for the mind is a
tidy place; when facts don't quite fit with our hopes and dreams, we distort them a bit.
Each day we struggle to build a future that brings us closer to the dream we seek, for
ourselves and our children, attempting to shape the reality of what we experience by what
we do. It doesn't always work. Under such circumstances hope can be crushed, and the grief
that follows is every bit as profound as in mourning the death of a person.
Although Claire's story on the surface was one of pain and loss, of
loneliness and coping with being alone, nonetheless for many years she had managed
artfully to find meaning in her life and accommodate to difficult circumstances. That was
one of the reasons why, in her private world, she preferred Paris to Montreal, and books
to people. In the stories of her favorite literature she always knew the ending. As the
three of us--she and her husband and I--explored her life story together on that snowy
winter day, it was clear to all that the event that kindled her melancholia was not her
automobile accident but the devastating disappointment of the canceled return to France.
That was where her hope, energy, and true emotional investment had been placed; that was
the next chapter of her life story that Claire had been writing when Elliot withdrew his
support, and her future and private hopes collapsed. She was grieving the loss of the
personal dream of introducing her adolescent daughters to what she herself had known and
loved as an adolescent, of taking them to the streets and bookshops of Paris where she had
crafted a life for herself out of the loneliness of her childhood. Her three days of tears
we may see as the protest phase of that grief, and then the inevitable return to her
literature, which had always worked for her in the past, as the phase of withdrawal. It
was in this state of grieving-perhaps through inattention or preoccupation, it is
difficult to reconstruct-that she had driven off the road that icy afternoon.
Depression, as William Styron describes in Darkness Visible, the
masterful memoir of his own experience of the illness, is a disorder "so mysteriously
painful and elusive in the way it becomes known to the self--to the mediating
intellect--as to verge close to being beyond description." The "manageable
doldrums" of everyday life only give "a hint of the illness in its catastrophic
form." For Claire, the accident was little more than what Styron describes as an
"ominous way station" between the initial grief of disappointment and the
melancholic descent that was to follow. In addition to the physical trauma, the driving
accident was another challenge to her already weakened sense of competence and value. Now
she was not even trustworthy in the care of her own children; the accident corroded
further a self-esteem already weakened by the emerging depression. But, ironically, with
the accident came suddenly and unexpectedly Elliot's undivided attention, something which
was destined to further obscure the true nature of Claire's illness.
Elliot Parker loved his wife and worried deeply about her, but he did
not understand her. While he could readily comprehend the physical trauma of having a car
roll down an embankment, he did not truly understand the emotional trauma of the
cancellation of a year in Paris. And it was not in Claire's nature to explain how
important it was to her or even to request an explanation of Eillot's decision; after all,
she had never received one from her first husband when he had abandoned her. There were
some questions that she had learned long ago it was better not to ask. And besides, her
husband now seemed concerned and attentive. Thus the accident itself further confused and
obscured the true nature of her disability. Her restlessness, fatigue, and pessimistic
preoccupation were taken as the residue of a nasty physical encounter. A flurry of medical
consultations ensued. She began taking sleeping pills for her growing insomnia and
returned to her old habit of sipping wine as she buried herself once more in the stories
of her favorite authors. And so, the lethargy of the emerging depression was exacerbated
by a growing addiction to barbiturates and alcohol. What echoes of her own mother's
alcoholism, genetic or otherwise, the drinking had for Claire, is hard to fathom.
Certainly as an access to the muse it had magical power; it became her traveling companion
as she wandered alone through a storybook world. But it also obscured the nature of the
physiological changes that she was beginning to experience as her melancholy deepened.
Many people who have mood disorders become dependent upon alcohol or
stimulants. In fact, studies estimate that over 50 percent, a majority, will be caught up
in such dependence at some point in their illness. For Claire, as for many, the alcohol
confounded her illness by disrupting further the daily housekeeping functions of appetite
and sleep, dulling her senses, and, together with the rising dose of sleeping tablets,
increasing her loss of emotional control. Arguments with her husband escalated; in all
probability the dizziness that first took her to a physician was related also. This
peculiar collection of disturbed behaviors, plus the memory of the accident, convinced
Elliot Parker that his wife had sustained some sinister progressive Injury to the brain.
The details of her own emotional anguish were overtaken by the quest for a "medical
explanation."
Again, such presentations are all too common in advancing depression.
It is especially confusing to the sufferer and to the family when the mood goes beyond the
experience of sadness to that of anhedonia and then to no feeling at all. After all, the
very word "depression suggests that sadness should be at its core, but the name is
inadequate to the breadth of disturbance that occurs in the disease. "A true wimp of
a word for such a major illness," complains William Styron, and I agree. Melancholia
has always been my preference, better capturing the "veritable tempest in the brain
that marks the experience of inner turmoil and confused thinking as harmony and emotion
drain away, often to be replaced--as for Claire--by a withered imitation of life. In
reality, the portrait of severe depression is complex and varied and many have been misled
by its common name.
Looking carefully into the events that precede depressions, some
precipitating social happenstance can be found in most cases. Changes that remove people
from social interaction with others seem to be the most malignant and are commonly
associated with the onset of depression and melancholia. Eugene Paykel, Professor of
Psychiatry at Cambridge University and an expert on depression and grief, has called these
exit events," in distinction to "entrance events" where social
opportunity--and demand--are increased. While desirable life changes--a new job, public
acclaim, or increased responsibility can tip some vulnerable souls into depression,
undesirable events such as a lost love or death are by far the most frequent. For Claire,
the loss of the year in France was a seminal "exit" event. It came at a time
when her children were growing rapidly and were soon to leave home; this was in her mind
the last opportunity to introduce them to French culture. She had planned the trip in
meticulous detail, emphasizing the extraordinary emotional investment she had made. Most
important of all in the genesis of her melancholia, that investment was tied closely to
the fragile foundations of her own life history, and to her brittle self-esteem.
Claire Dubois had had a remarkably lonely childhood. She had never
known her father; her mother was preoccupied with a whirlwind social life and her own
tragedies. Claire had been given little consistent nurturing, and if it hadn't been for
the stability of the stepfather's household and extended family she would have faced even
greater privations because of the war and her own mother's death. Apart from her
stepfather, whom she genuinely thanked for introducing her to books, most of the men in
her life-and particularly her first husband-gave Claire the profound sense that there was
something about her that was unworthy, even undesirable. Through experience, Claire had
become wary of attachment. In her marriage to Elliot it was her children who were the
focus of her existence, and when well she made every effort to provide for them the
mothering she had missed. But Claire was not without her triumphs. In fact, the life she
had constructed for herself in Paris as an adolescent, she remembered with warmth and
fondness. She was extraordinarily well read and a fine editor. She had loyal friends and
acquaintances through her work, and loved the energy she discovered in the world of books.
But her true sense of self was tied to those formative adolescent years in Paris, and she
wanted desperately to pass this experience on to her children. Living in the English
culture of her husband's family in Canada, even in French-speaking Canada, she felt
trapped and not herself. These were natural barriers that a return to Paris might
overcome. The year in France she had constructed for her daughters had been constructed
also for herself.
While unique in detail, Claire's story has a familiar outline. Many
stumble along life's road, burdened by hardships such as hers, but do not fall victim to
melancholy. Why was Claire so vulnerable? Unfortunately I cannot give an absolute answer,
and indeed that luxury we may never have, considering that much of what we each experience
is driven by chance. What we do know, however, from various studies, is that when children
lose a parent, or parents, in childhood they are at increased risk for depression, and
also for suicide. There appear to be two periods of particular vulnerability: losing a
parent before the age of five, and also during adolescence. Of course it is not just the
loss of the parent alone-as if that were not trauma enough-but the social consequences of
the loss that make the tragic differences. Before the age of five, the death of either the
mother or father emerges as of special significance in most studies, in all probability
because of the social, and sometimes economic, chaos that frequently follows such a loss.
Divorce can have the same impact. In early adolescence it is most frequently the absence
of the father that seems to tip the scales.
Thus, through the early death of her father and her sense of neglect in
childhood, there is little doubt that Claire was sensitized to loss and to the
disappointments that were to come. But, as do many, she also learned from these
privations: that to commit herself was to be vulnerable, and that grief is often the price
of attachment. Thus Claire Dubois learned to keep her distance and her intimate
attachments to a minimum--a lesson that was reinforced by the experience of her first
marriage. Apart from her daughters and her books, she was committed to very little; that
was how she had sustained herself. She had learned the value of conserving herself through
emotional withdrawal. This was not her preference, but a rescue strategy from an early
age. Impulsively, she had attempted to break out of this loneliness in both of her
marriages. And while in the bond with Elliot Parker she had found material stability,
there was little emotional commitment. Elliot, too, through his natural temperament,
reinforced this distance between them.
During the early winter months, as Claire Dubois slipped deeper into
the pit of melancholy, she withdrew to the world of books and her favorite authors. Claire
turned once more to Virginia Woolf's complex novel The Wave, a story of six intertwined
characters, for which Claire had a particular affection. But in the realm of books the
"luxury of concentration, as William Styron has described it, is the essential
coinage. As the shroud of illness fell upon her, Claire found sustaining such attention
increasingly difficult. The draughts of wine and sleeping medicine multiplied, and a
critical moment arrived when Virginia Woolf's woven prose could no longer occupy Claire's
befuddled mind. During that darkest week that separates the Christmas festival from the
New Year the coinage finally was spent; Woolf's characters slipped beyond Claire's grasp.
Access to her favorite author was now denied. Deprived of her last refuge, there was only
one thought in Claire's mind, drawn possibly from her identification with Virginia Woolf's
own suicide: that the next chapter in Claire's life should be to fall asleep forever, to
hope for death itself. This stream of thought, almost incomprehensible to those who have
never experienced the dark vortex of melancholy, is what preoccupied Claire Dubois in the
hours before she took the overdose of sleeping pills that, during the next afternoon,
first brought her to my attention.
Those bleak midwinter days would mark the nadir of Claire's
melancholia. That was my promise to her, and to her husband, as I explained the nature of
the illness and how it could be brought under control. But there was one stipulation. The
first step on the road to recovery would necessitate a stay in the hospital. I was worried
about Claire's drinking and the number of sleeping pills she had been taking--quite apart
from the overdose itself. I outlined for them how the brain can get accustomed to the
presence of such powerful substances, and how when they are suddenly removed, seizures can
occur. Better that we taper slowly Claire's dependence, freeing the brain from its
addiction, before beginning actively to treat the depression with a more appropriate
pharmacology.
As the old year turned, and for most of January, Claire was in the
hospital. Her confinement was welcomed, she said, although she soon missed her
daughters--which I took as a reassuring sign that the anhedonia was beginning to crack.
What she found difficult was our insistence on a routine in social reengagement. Getting
out of bed in the morning and taking a shower, eating breakfast in the company of others,
choosing from a menu for lunch, taking a walk-simple things which in health we do every
day were for Claire giant steps, comparable to walking on the moon.
During normal times, emotion swings like the pendulum of an old
Regulator clock, back and forth at a steady pace, marking the experiences of the day. In
melancholia, that comfortable excursion slows and falters until, with anhedonia, emotional
regulation is lost. The pendulum sticks. Simply conceived, the goal of treatment in
melancholic depression is to release and re-regulate the pendulum to swing freely and
steadily again.
The psychiatric units at the Dartmouth-Hitchcock Mental Health Center
had been developed for that purpose. Light and airy with vaulted ceilings, bright colors,
and comfortable furnishings, they broke the mental asylum stereotype of battleship gray
and bedpans. Local people--both my colleagues working in other specialties at the hospital
and those living in the surrounding community---had named us the Hitchcock Hilton, and
secretly we were pleased. These were intensive-care units for the emotional brain,
meticulously designed for behavioral rehabilitation. A regular routine, as we insisted
upon for Claire, and social interaction are essential emotional exercise in any recovery
program. They are calisthenics for the emotional brain. The action of antidepressant drugs
can be similarly understood. They prod the pendulum to assume once more its regular
excursion.
Other drugs will do the same, although not always with a beneficial,
stabilizing effect. Those who suffer mood disorders, together with many who don't, have
discovered that stimulants--alcohol, coffee, and particularly cocaine--can all profoundly
alter mood. That is what Claire had been doing since childhood, first with her watered
wine and later with the heavy drinking that had so troubled her husband. Where individual
attempts have been made to treat melancholy mood, alcohol has a very long history.
Such "self-medication" has only a short-term gain in
depression. The disturbed communication among the brain's neurons-the billions of cells in
the emotional brain that in health ensure the pendulum's steady swing is ultimately made
worse by alcohol, cocaine, and other stimulants. Antidepressants are not perfect either,
although, as we have learned more about the brain chemistry of depression, the precision
of the drugs available in the market has improved. In the late 1970s, when Claire Dubois
was my patient, the most commonly used class of antidepressants was the
"tricyclics"-so named because of their chemical structure. Tricyclic
antidepressants, and essentially all other antidepressant medications, alter the pattern
of communication among neurons in the emotional brain by changing the activity of the
chemical messengers carrying information. The major difference between tricyclics and
drugs developed in the late 1980s, such as Prozac" (the brand name for fluoxetine),
is that the tricyclic antidepressants influence several different messenger systems,
including some best left alone, whereas Prozac affects only serotonin, the messenger
thought to be a key player in the emotional brain. As a result, patients find Prozac more
friendly, with fewer disturbing side effects, such as dry mouth and tremulous hands.
But the tricyclics are comparable to the newer drugs in lifting
depression, if such side effects can be tolerated. Studies show that approximately
two-thirds of those suffering depression experience improvement in their symptoms with
both classes of antidepressant. Sometimes it is necessary to try several before the right
one is found--similar in some ways to finding a comfortable suit of clothes--but in
Claire's case I was lucky. The first one off the peg--amitriptyline, a drug named Elavil
by its manufacturer-seemed to fit. We had substituted for the alcohol and sleeping pills
with diazepam (Valium, a drug with addictive properties of its own), which initially
satisfied the brain's craving, subsequently permitting a controlled withdrawal from the
addiction by slowly lowering the daily dose. Toward the third week of her hospital stay,
as this integrated pharmacological and behavioral treatment took hold, Claire's emotional
self began showing distinct signs of a reawakening.
Recovery from severe depression is often erratic; a little advancer is
made--a meal tastes good, conversation is easier--then comes the backslide of a wakeful
night. It has much in common with climbing a steep and slippery hill. Emerging from the
pit of despair, as Claire observed, is not for the fainthearted. But given time, as the
emotional brain's regulatory precision returns, the body's housekeeping improves; the
daily contrast between bleak mornings and the relative calm of evening--what psychiatrists
call diurnal variation--decreases and the pleasure of sleep is regained. For Claire, the
greatest gift of all was the return of concentration, opening her mind once more to
literature. Telephone calls were made, books arrived, and Claire's life again assumed an
outward calm.
Beneath this tranquillity, however, troubling thoughts persisted. Our
conversations were making clear to both of us that, although her deep melancholy was in
retreat, Claire carried burdens unlikely to be relieved by 200 milligrams of Elavil and a
short stay in the hospital. There was a need to "rethink" the way she felt about
herself and conducted her relationships with others, particularly with men. While
depression is an illness named for disordered mood, it is also a thinking disorder.
Claire's view of herself during the period of melancholia had been dark and negative: She
was a useless soul from whom friends had fled, a burden to her husband and family. But
even as these dark shadows receded, there remained a distortion in her thinking,
especially in regard to Elliot and her sense of self-worth as his partner. That
individuals predisposed to depression are frequently pessimistic about themselves and
their place in the social order is something many clinicians and researchers have
witnessed and written about over the years. It is a thinking pattern both subtle and
pervasive that disturbs important relationships and distorts decision making by explaining
the world in negative terms. This "explanatory style" in many instances seems to
be a learned behavior -- something that has grown from adverse experience--while in others
it is a subtle shaping of behavioral patterns--particularly shyness and fear of
novelty--that are evident in early infancy.
To Claire, at the center of her negative self-perception lay her
relationship with her husband, Elliot Parker. She felt she needed him but at the same time
was angry, considering herself trapped by the marriage. Quoting Virginia Woolf, Claire
described to me how she had been "slowly sinking, waterlogged, her will into
his" for more than a decade. It was true that Elliot was a willful man and by nature
undemonstrative in his emotional expression, but Claire had brought her own difficulties
to the marriage. She had long believed that something about her was damaged, making her
fundamentally unattractive to others and particularly to men. Thus she assumed the worst
regarding Elliot's remote behavior. I had little doubt that the roots of this
self-appraisal lay in the capricious nurturing she had suffered as a young child. It was
not difficult to imagine how her mother's whirlwind social life and repeated illnesses,
plus the early death of her father, had made Claire's young life a chaotic experience.
Circumstances had combined to deprive her of the stable attachments from which most of us
securely explore the world, and hone our social experience, in childhood and adolescence.
In the absence of any consistent support, Claire had mounted her own rescue operation.
Armed with a fine native intelligence, she had discovered a love of intellectual pursuits
and in the solitude of books a brittle independence that avoided emotional closeness. But
secretly she longed for intimacy and considered her isolation another mark of her
unworthiness. Her fragile self-esteem stemmed from these roots and had been further
weakened by the experience of her first marriage. The same roots dictated her
"explanatory style"--the assumptions upon which she habitually explained her
daily experience. Faced with social circumstances where she believed she was being
rejected or denied some opportunity, rather than logically exploring an explanation she
responded by withdrawing, feeling a mixture of guilt (that she had sought special favor)
and anger (that she was being deprived because others considered her unworthy).
Such patterns of thinking drive behaviors that are socially
maladaptive, even self-damaging, because they destroy opportunity for new relationships.
But they are patterns commonly found in those who suffer depression. With motivation to
examine them in the context of the true social circumstances, however, it is possible to
shed this depressive cast of mind through psychotherapy. While psychotherapy comes in many
forms-some of which are better suited and more focused upon treating depression than are
others-psychotherapeutic intervention and education are an essential part of the recovery
from any depression. Indeed, there is now strong evidence that for those who suffer
repeated illness, both psychotherapy and antidepressants are important in preventing
further episodes of depression.
Claire and I began work on the psychotherapeutic reorganization of her
thinking while she was still in the hospital and continued after she had returned home to
Montreal. I was initially concerned that the three-hour drive from her home to the
hospital was an unnecessary hardship but she insisted that starting over again with
another physician was of even greater concern to her. Claire was now committed to change
and each week she creatively employed the commuting time to review the tape of our
psychotherapeutic session, making detailed notes after she had returned home. Playfully,
Claire referred to this activity as her "homework." While rather unorthodox, in
practice it served very well. Any ambiguity and misunderstanding between us was rapidly
addressed, for the tape remembered everything, and Claire's notes highlighted her central
concerns for our next discussion. In fact, looking back I realize that Claire had invented
for herself something akin to the process of the "structured"
psychotherapies--particularly cognitive therapy--that were to gain ascendancy in the
1980s. (It is not only antidepressant drugs that have evolved but also the psychotherapy
of depression.)
A preoccupying theme of our discussions during the time that Claire and
I worked together was the tension she had always experienced between her need for
closeness and a fear of rejection. This personal dynamic was rapidly apparent in her
relationship with me and was one of the reasons why she insisted upon remaining a patient
of mine. Having decided to trust herself to my care--in itself a major step toward
health--the threat of separation provoked considerable anxiety. Attachment is a primary
drive for human beings; in infancy and childhood it is through attachment that we each
develop a sense of integrity and autonomy. For individuals such as Claire, and many others
who suffer depression, it is frequently the inconsistency of early attachments that have
impaired the smooth evolution of a comfortable autonomy, damaging self-esteem and
distorting intimate relationships later in life. Such impairments of psychological
maturation are often at the center of the exaggerated dependence and acute sensitivity to
disappointment that many depressive individuals experience.
Claire described it well in one of the notes she wrote to me some
months after she began psychotherapy:
I have been thinking about my pathological dependence on Elliot -- reflecting upon it
now that we have started the untwisting. When he is away I feel that I want to go to
sleep, to go to bed until he returns, and yet I am afraid of him and will agree to almost
anything when he's home, to keep the peace. I need him but I hate myself for it. Switching
back and forth requires tremendous adroitness and sometimes with the tension I can feel
the ulcer forming-except in my case it is stalagmites in my head. I want his approval, but
it never comes; nor does his disapproval for that matter. It's a non-relationship between
peers. If I'm still looking for a father and someone to talk to, to care for me as a child
(as it sometimes seems in my behavior towards you), then the lack of give-and-take as
adults seems reasonable. At least it's an explanation, because I'm not behaving as an
adult. As an adult I would have to make decisions about my daily life or even argue my own
point of view if I didn't agree-that's what really frightens me. I would have to be a real
person. Am I afraid of physical wounding of some sort? I don't think so. So it must be
that I'm frightened that he will leave me, and so it goes round and round, that's the
twisting part. It seems that what I really want I've missed by about fifty years-a
comfortable attachment in which I can learn to be myself. Now it's like learning to walk
for the first time as an adult, slow, awkward and seemingly impossible at times. I don't
really feel at the turning point, yet I must believe that there will be one, that I will
break the angry dependence I have on Elliot.
Slowly, for it took the best part of a year, Claire did break that
dependency. All together, after recovering from her melancholia, Claire Dubois and I
worked intensively together for almost two years. It was not all smooth sailing. On more
than one occasion there were panicked midnight calls when in the face of uncertainty and
squabbles with Elliot a sense of hopelessness returned. And occasionally, at some social
gathering, she would succumb to the anesthetic beckoning of too man), glasses of wine. But
the curve was upward; slowly Claire was able to the old patterns of behavior--the rescue
strategies developed in her youth--and address the specifics of managing the realities of
her adult world. While it is not the case for all, the experience of depression for Claire
Dubois was ultimately one of renewal.
The experience of melancholic depression varies among individuals,
depending upon the nature of their special vulnerability and the details of the life
story. The emotional content of the suffering is driven by what has personal meaning, the
aspirations and the people to whom attachments have been made, and the control that can be
exerted over the events that challenge those attachments. Despite the enormous diversity
of these circumstances, once the illness is established, in almost every individual a
similar core of disabling symptoms emerges. Objectively, as I have said, the behaviors
that change in melancholia can be clustered into three groups. These are the aberrations
of emotion and mood, changes in the housekeeping functions of the brain that regulate
sleep, appetite, energy, and sexual function, and disturbances of thinking and
concentration. Each of these areas represents a part of the functional system of the
emotional brain which, with a rapidly advancing neuroscience, we are increasingly able to
define anatomically and physiologically.
That the changes in behavior are so consistent in established
melancholia, despite the extraordinary diversity of events and experiences that can
trigger the illness, suggests that there is a final common pathway of dysregulation
in the emotional brain that determines the core dimensions of what is experienced. While
in the beginning these changes are subtle enough to be dismissed as the emotional
consequences of the buffeting of daily life, as the symptoms progress they become
incapacitating. Then, with this final common pathway of disability established, the loss
of emotional and bodily harmony in melancholia stands clear for all to see. It is not only
mood that has changed but the ability to thoughtfully negotiate the social complexity of
everyday life-the essential key to adaptation and survival-and to orchestrate the
fundamental rhythms of the body. One of the major reasons that we do not diagnose
depression earlier is that it takes time for this core of the characteristic profile to
emerge, and frequently-as in the case of Claire Dubois the right questions are not asked.
Unfortunately, we find that this state of ignorance is often present as well in the lives
of those who experience mania-the expansive, colorful, and deadly cousin of melancholia. |