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 chronicity. "
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 more drastic

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 happen.

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 wisdom?

(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.