by Robert D. Lehmann, C.I.S.W.
"We must begin with the premise that chronic illness, by definition,
cannot be cured, that indeed the quest for a cure is a dangerous myth
that serves patient and practitioner poorly. It distracts their attention
from step by step behaviors that lessen suffering, even if they do not
heal the disease. Patient and practitioner both need to accept that
the primary goal of treatment is the reduction of disablement in the
ongoing experience of an illness. To the extent possible, the goal should
be to reduce the frequency and severity of exacerbations in the ongoing
experience of a chronic illness. The family as well as the patient must
learn to accept this treatment objective. In order to convince them
of its importance to care, the practitioner must relinquish the myth
of cure. He must try to accept even modest improvement in the illness
experience as an acceptable outcome. Agreement between the principals
that the patient has a chronic illness should not mean confirmation
of unavoidable disability, however. Indeed, the practitioner must seek
to prevent the undesirable social and psychological consequences of
Arthur Kleinman "The Illness Narratives", 1988
I have had experience both as an employee of the mental health system,
and as a consumer with a mental disorder. For the past six years, I have
been a psychiatric social worker. All my work has been with the chronically,
severely, mentally ill like myself. For thirty plus years, I've suffered
from bipolar disorder. Treated by countless psychiatrists and clinicians,
I have been frequently hospitalized and even jailed.
One gains a unique perspective on mental illness by being a consumer
on a hospital ward, 24 hours a day. However vigorously mental health providers
try to empathize with that experience, a gulf exists between them and
the people who have actually undergone it.
The most valuable knowledge that I have learned on hospital wards has
taken place after the doctors have left
for the day. The best way to get to know another consumer is in the middle
of the night. If both of you are insomniac, sitting by yourselves in a
lounge, that is the hour when secret concerns and hopes are shared, out
of the staff's earshot.
In every hospital, there is a strong consumer culture. The most unlikely
pairs will intensely support each other. Love affairs take place on the
wards, some platonic, some consummated. I have been lucky enough to escape
rapes and serious assaults. Many are not so lucky.
Consumers don't help each other get better by parroting the therapeutic
phrases they hear from staff. Consumers speak a more frank, despairing
language. Consumers sense that, beneath statements of bland optimism,
there is the apprehension of a dark, hurtful stream of negative events
and troubles. If a consumer talks bullshit on the ward, he goes over like
a turd in a punch bowl.
Consumers depend on each other for honesty. They get the rah rah rah
stuff from the staff. Often, honest language may just be silence just
two, or a group of people, sitting together, musing.
No chronically mentally ill person wants to be in the hospital not even
the ones assessed by the staff as hospital dependent. By being admitted,
a consumer loses her citizenship. She immediately gets that message, as
her pockets are turned out, her belt and shoelaces are confiscated, her
luggage is searched for "sharps". She has to ask permission
for "privileges" that the day before she took for granted: a
pencil, a phone call, a smoke. She quickly learns to fear even the most
mediocre staff member's evaluation, because it may lengthen her stay.
She feels that her treatment plan is decided quickly and arbitrarily,
without enough of her own input.
In my own work with consumers, I have tried to engage in negotiation
with them as colleagues. I ask my consumers, and their families,
"What do you think is wrong?"
"What caused the crisis?"
"What do you want me to do?"
I ask questions about the reasons for the onset of symptoms at a particular
time. I elicit their understanding of what gave rise to the symptoms,
their expected course, and their perceived seriousness. I ask, "What
is the chief way this illness, or treatment, has affected your life?"
I ask, "What do you fear most about this illness, or treatment?"
Together, as a collaboration consumer, family, and I are involved in the
care. One of the benefits of this approach is that, by asking the consumers
what they want and need, I myself carry less of the burden for their treatment.
My own stress level is markedly reduced.
When she is an inpatient, the consumer never feels that she has enough
access to the real decisionmakers on the ward the doctors and the charge
nurses. She prays that she gets a good clinician, if she gets one at all.
She is reduced to sending the staff a humiliating series of notes paper
requests, most of which never seem to get answered.
In a hospital, meds are often changed quickly and arbitrarily, without
the consumer's consultation. He does not know how it's been decided that
the old drugs didn't work. He rarely gets a clear idea of what the new
drugs' therapeutic effects are supposed to be, or what side effects can
be expected. The nursing staff seems so blase about the medications, although
consumers usually feel that drugs are the most important keys to getting
out of the hospital. If consumers ask them important questions, staff
members refer them to the doctors. It is rare for a doctor to stop and
carefully go over a pharmacological matter. Doctors are poised at the
interface between scientific and lay cultures. If they are doing their
jobs well, they explain the science of the medication, and correct even
debunk erroneous information.
I have no basic argument with the biomedical model, but I believe that,
in speaking of the model with consumers, the practitioner must act as
a translator. It would be wonderful if doctors accepted that it is possible
to talk with consumers, even those who are most distressed, about the
actual experience of the illness. Witnessing and helping to order that
experience can be of great therapeutic value.
Most consumers compare their experience in a hospital to the experience
of jail. The feeling of confinement is intense. The staff lack trust that
the majority of the consumers are able to control their behavior. All
consumers are infantilized to a state of childish dependence.
Because all consumers are treated as potentially lethal, the staff expends
enormous amounts of energy in maintaining what it considers adequate control.
The atmosphere on an inpatient ward is tense because of this exerted energy.
The consumers sense the efforts which the staff makes to stifle them.
The staff becomes exhausted, and burn out occurs with great frequency.
I sympathize with the staff. They feel that their mandate is to provide
a safe haven for all consumers. But care for chronic illness should be
more like a negotiation among therapeutic allies than actions the staff
performs on a consumer. My complaint is with the staff's mindset: "We
are the professionals, and you patients are the subjects we have to control."
I have encountered that point of view among many of my outpatient treatment
providers, as well as those within the hospital.
In every hospital, there is a strong consumer culture.
The most unlikely pairs will intensely support each other.
What I have objected to is the staff's pressure on me to accept my psychiatric
disability as a disease. I've been told that I have a chronic illness,
which has a lifelong course. By faithfully taking my medicines, and by
eschewing avoidable stress, I can 'control' my illness, as far as it can
be controlled. But, I am seen as afflicted, handicapped by a disorder
of an entirely negative nature, by something that I've unluckily 'caught.'
This analogy to psychiatric disorder as virtually a communicable disease
stretches far into an institution.
During my last hospitalization, in one group therapy session, we were
asked to draw a picture of how we saw ourselves in the next month.
It would be wonderful if doctors accepted that it is
possible to talk with consumers, even those who are most distressed, about
the actual experience of the illness.
I made a drawing of myself crouched over a rifle, blowing out my heart.
By avoiding discussing my picture, the therapist made it clear that she
was frightened of the emotional space which I inhabited at that moment.
She was uncomfortable with the fact that the chronically ill live in fearful
emotional states. Even a modest change can produce an eruption of symptoms
distressing enough to reveal a state of mind that is "unacceptable".
Instead of acknowledging my picture, she stayed busy talking to the other
consumers about their more optimistic work.
Only one other person in that group had anything to say about my picture.
This person was a young mother who was in the hospital because she had
planned to kill her two young children, as well as herself. Referring
to my picture, all that she said was, "I've felt like that."
That single sentence validated the suffering that I was then feeling.
It told me that I was not alone. I believe that my psychiatric disorder
has made it possible for me, as a treatment provider, to simply be with
consumers when they are in distress, rather than staying busy, doing things
to them. Professionals are taught to "intervene" on consumers.
On what are they intervening? A lot of time, professionals are intervening
on their own anxiety at perceiving the suffering of their consumers. Uncertainty
is as central to the experience of the practitioner as it is to the consumer.
A dangerous hubris can exist in attempts to formulate systems of care
that claim to answer each and every one of the serious dilemmas faced
by consumers and families.
As a consumer and a survivor, with a diagnosis, I do not fit DSM's stereotypical
description of my disorder. My medications have had to be continually
altered, to catch up with my changing symptoms. The upshot is that practitioners,
trained to think of "real" disease entities, with natural histories
and precise outcomes, find my chronic illness both messy and threatening.
I am an atypical sort. I frustrate their desire to clearly categorize.
I have experienced my care as a problem for the mental health system.
Nevertheless attempts to diagnose me, "definitively," go on.
Diagnosing me labels me. Labeling me stereotypes me. I believe that my
treatment providers are totally frustrated because my stereotype keeps
changing just when they think they've got me tagged. They, of course aren't
stereotypes, with symptoms, but interventions are needed to treat me.
stagnate, or even to regress. His theo~ should I dare display the same
I am in danger of "losing" myself to
behaviors I see them exhibiting in the my illness. normal work day; "Look...
Robert is agitated," "...lacks insight," "...is uncooperative,"
"...non compliant," "...treatment resistant." I'm
not a person. I'm a vehicle for symptoms. I'm an illness who answers to
a person's name. I need to be managed... structured...
In my own clinical work, I have tried to avoid imposing labels on my
clients. If I think of consumers as label bearers, I find it hard to see
them as unique people. I fall into stereotyped thinking because I've read
their chart and know their diagnosis, then, "Chuck is paranoid. I
have to watch what I say to him. He's a threat to become violent."
As a consumer, I feel the need to present myself consistently, in contact
after contact, to my treatment providers. I fear that they will become
confused if I behave idiosyncratically. So, I do my best to smooth out
my rough spots. The result has been that I've looked fine to my therapist
on Monday, and been committed to a hospital on Wednesday. I am coming
to accept that care is a constant struggle to experiment and persevere,
just like the illness experience itself. The determination of successful
outcome is an ongoing, very long term affair. A successful therapeutic
relationship will be tested by severe bad spells.
As a treatment provider, I've tried to be open to the changeability of
my clients. In spite of foot thick charts, in spite of diagnoses which
haven't changed for years, I've tried to keep myself open to the fact
that today is a unique day for me and him or her. A lot may have happened
to that person since last we were together.
Right now, I personally am going through a frightening period in which
I seem to be getting sick more often. For the past two years, I have displayed
a variety of bizarre new behaviors which have upset, and sometimes revolted,
my family and my treatment providers. I am now being termed a "rapid
cycler". The implication is that I am on a downhill course and that
I offer my family the same opportunity to accept and
love me as I am rather than seeing me as a blasted hope, whose life has
suffered a sad and irreversible loss.
Curiously, I have not personally felt this current experience to be disastrous.
Instead, this period seems to have concentrated and clarified my central
conditions of living. I fear that I may be abandoned by my family, if
the truth be known. But this fear is counterbalanced by new realizations
at work and with my friends, in which I am able to frankly avow that I
have a disability. I offer my family the same opportunity to accept and
love me as I am rather than seeing me as a blasted hope, whose life has
suffered a sad and irreversible loss. But it is hard to know if that will
In my professional life, I have tried to maintain this same openness
toward the growth of my clients. At Yale, psychiatry professor John Strauss
speaks of `wood shedding,' a period during which a person may appear to
is that such periods are a part of the natural pulsation of a person with
a disability something like a hibernation. As the next step, whether or
not these people have an awakening they emerge from the state in which
they have been with important new information about themselves. In the
context of a mental illness that may be the discovery that one has made
a significant advance in the recovery process.
In my long term work, I have witnessed this very cycle of constriction
and expansion in my clients. I just never had a secure hold on it till
I heard Dr. Strauss put it into words. Why should a person with a mental
disability be any different than anyone else in the way he or she acquires
(This article was first published in 1995 in The Journal of NAMI California)
ROBERT LEHMANN who has been treated for a psychiatric disorder for 35
years, received a Master's Degree from Columbia University School o f
Social Work in the mid1980's and has worked for the Connecticut Department
of Mental Health ever since.