Confessions of a non-compliant patient   

By Judi Chamberlin                                                                   

 

A famous comedian once said, "I've been rich, and I've been poor, and believe me, rich is better." Well, I've been a good patient, and I've been a bad patient, and believe me, being a good patient helps to get you out of the hospital, but being a bad patient helps to get you back to real life.

Being a patient was the most devastating experience of my life. At a time when I was already fragile, already vulnerable, being labeled and treated only confirmed to me that I was worthless. It was clear that my thoughts , feelings, and opinions counted for little. I was presumed not to be able to take care of myself, not to be able to make decisions in my own best interest, and to need mental health professionals to run my life for me. For this total disregard of my wishes and feelings, I was expected to be appreciative and grateful. In fact, anything less was tacked as a further symptom of my illness, as one more indication that I truly needed more of the same.

I tried hard to be a good patient. I saw what happened to bad patients: they were the ones in the seclusion rooms, the ones who got sent to the worst wards, the ones who had been in the hospital for years, or who had come back again and again. I was determined not to be like them. So I gritted my teeth and told the staff what they wanted to hear. I told them I appreciated their help. I told them I was glad to be in the safe environment of the hospital. I said that I knew I was sick, and that I wanted to get better. In short, I lied. I didn't cry and scream and tell them that I hated them and their hospital and their drugs and their diagnoses, even though that was what I was really feeling. I'd learned where that kind of thing got me - that's how I ended up in the state hospital in the first place. I'd been a bad patient, and this was where it had gotten me. My diagnosis was chronic schizophrenia, my prognosis was that I'd spend my life going in and out of hospitals.

I'd been so outraged during my first few hospitalizations, in the psychiatric ward of a large general hospital, and in a couple of supposedly prestigious private psychiatric hospitals. I hated the regimentation, the requirement that I take drugs that slowed my body and my mind, the lack of fresh air and exercise, the way we were followed everywhere. So I complained, I protested, I even tried running away. And where had it gotten me? Behind the thick walls and barred windows and locked doors of a "hospital" that was far more of a prison that the ones I'd been trying to escape from. The implicit message was clear: this was what happened to bad patients.

I learned to hide my feelings, especially negative ones. The very first day in the state hospital, I received a valuable piece of advice. Feeling frightened, abandoned, and alone, I started to cry in the day room. Another patient came and sat beside me, leaned over and whispered, "Don't do that. They'll think you're depressed." So I learned to cry only at night, in my bed, under the covers without making a sound.

My only aim during my two-month stay in the state hospital (probably the longest two months of my life) was to get out. If that meant being a good patient, if that meant playing the game, telling them what they wanted to hear, then so be it. At the same time, I was consumed with the clear conviction that there was something fundamentally wrong here. Who were these people that had taken such total control of our lives? Why were they the experts on what we should do, how we should live? Why was the ugliness, and even the brutality, of what was happening to us overlooked and ignored? Why had the world turned its back on us?

So I became a good patient outwardly, while inside I nurtured a secret rebellion that was no less real for being hidden. I used to imagine a future in which an army of former patients marched on the hospital, emptied it of patients and staff, and then burned all the buildings to the ground. In my fantasy, we joined hands and danced around this bonfire of oppression. You see, in my heart I was already a very, very bad patient!

One of the things I had already discovered in my journey through various hospitals, which culminated in my involuntary commitment to the state hospital, is that psychiatric drugs didn't help me. Every drug I was given made me feel worse, not better. They made me fat, lethargic, unable to think or to remember. When I could, I refused drugs. Before I got committed, I used to hide the pills in my cheek, and spit them out when I was alone. In the state hospital, I didn't dare to try this trick. I dutifully swallowed the pills, hating the way they made me feel, knowing that, once I was free, I would stop taking them. Once again, I was non-compliant in thought before I could be non-compliant in deed.

Now I want to make one thing very clear here. I am not advocating that no one should take psychiatric drugs. What I am saying, and I want to make sure this point is understood, is that each individual needs to discover for himself or herself whether or not the drugs are part of the solution, or part of the problem. Many people I know and respect tell me that they would not be where they are in their recovery were it not for the particular drugs that they have found work for them. On the other hand, many others, of which I am one, have found that only when we clear ourselves of all psychiatric drugs do we begin to find the road to recovery. We need to respect these choices, and to understand that there is no one single path for all of us.

Psychiatric drugs, like all drugs, have side effects. If the positive effects outweigh the negative effects, then people will generally choose to take the drugs. When the negative effects, however, outweigh the positive ones, then the choice not to take the drugs is a good and reasonable one. Side effects can be more easily tolerated when one is gaining something positive in return. Let my give an example from my own experience. Every day, I take anti-inflammatory drugs to control the symptoms of arthritis. Without these drugs, I would be in pain much of the time, and find it difficult to move easily. I'm willing to put up with the danger of developing ulcers (and I take another drug to help protect my stomach), because the cost/benefit ratio works out in my favor. If, on the other had, the anti-inflammatory drug didn't relieve the arthritis pain, then the cost/benefit ratio would go the other way, and I would stop taking the drug and discuss with my rheumatologist what other approach to try.

Here is the key difference between what happens to psychiatric patients and what happens to people with physical illnesses. With my rheumatologist, and with my lung doctor (I also have a chronic lung disease). I am a full partner in my own treatment and recovery. I am consulted, listened to, and given the information I need to make informed choices. I acknowledge that the doctors have expertise that I lack, and they, in turn, acknowledge that I have information about the workings of my own body that they need to guide them in their recommendations. Sometimes, we disagree. Then we talk about it. Sometimes I take their advice, while other times I don't.

Psychiatric patients, on the other hand, are usually assumed not to know what is best for us, and to need supervision and control. We are often assumed to be talking in code; only so-called "experts" can figure out what we really mean. A patient who refuses psychiatric drugs may have very good reasons - the risk of tardive dyskinesia, for example, or the experience of too many undesirable negative effects. But professionals often assume that we are expressing a symbolic rebellion of some sort when we try to give a straightforward explanation of what we want, and what we don't want. I'm sure you've all heard the many psychiatrist jokes that feature the punch line, "Hmm, I wonder what he means by that?" Well, doctor, I want to tell you, we usually mean just what we are saying. In the slogan of the women's movement: "What part of no don't you understand?"

I consider myself a very lucky person. I don't think that I have some special talent or ability that has enabled me to recover when so many others seem stuck in eternal patienthood. I believe that recovery is for everyone. In the words of the mission statement of the National Empowerment Center, we: carry a message of recovery, empowerment, hope and healing to people who have been diagnosed with mental illness. We carry that message with authority because we are a consumer-run organization and each of us is living a personal journey of recovery and empowerment. We are convinced that recovery and empowerment are not the privilege of a few exceptional leaders, but rather are possible for each person who has been diagnosed with a mental illness. Whether on the back ward of a state mental institution of working as an executive in corporation, we want people who are mental health consumers to regain control over their lives and the resources that affect their lives.

One of the elements that makes recovery possible is the regaining of one's belief in oneself. Patients are constantly indoctrinated with the message, explicit or implicit, that we are defective human beings who shouldn't aim too high. In fact, there are diagnostic labels, including "grandiosity" and "lack of insight," to remind us that our dreams and hopes are often seen as barriers to recovery instead of one its vital components.

Professionals and patients often have very different ideas of what the word "recovery" means. Recovery, to me, doesn't mean denying my problems or pretending that they don't exist. I have learned a lot from people with physical disabilities, who think of recovery not in terms, necessarily, of restoring lost function, but of finding ways to compensate or substitute for what one may be unable to do. Some of the most able people I know, in the true sense of the word, are activists in the physical disability movement - they may not be able to see, or hear, or move their limbs, but they have found ways to do the things they want to do despite these difficulties, and despite those professionals who advised them not even to try. Without our dreams, without our hopes for the future, without our aspirations to move ahead, we become truly "hopeless cases."

I often hear professionals say that, while they support the ideas of recovery and empowerment in principle, it just won't work for their clients, who are too sick, too disabled, too unmotivated. Whenever I hear these objections, I want to know more about what kinds of programs these professionals work in, and what goes on there. I know that the professionals who knew me as their patient thought the same things about me. That's the dilemma of the "good patient." A good patient is one who is compliant, who does what he or she is told, who doesn't make trouble, but who also doesn't ever really get better. A "good patient" is often someone who has given up hope and who has internalized the staff's very limited vision of his or her potential.

Now, again, I want to make myself clear. I'm not saying that mental health professionals are evil people who want to hold us all in the grip of permanent patienthood, and who don't want us to get well. What I'm saying is that there's something about being a "good patient" that is, unintentionally, perhaps, incompatible with recovery and empowerment. When many of us who have become leaders in the consumer/survivor movement compare notes, we find that one of the factors we usually have in common is that we were labeled "bad patients." We were "uncooperative," we were "non-compliant," we were "manipulative," we "lacked insight." Often, we were the ones who were told we would never get better. I know I was! But twenty-five years of activism in the consumer/survivor movement has been the key element in my own process of recovery.

Let's look at this word "compliance." My dictionary tells me it means "acquiescent," "submissive," "yielding." Emotionally healthy people are supposed to be strong and assertive. It's slaves and subjects who must be compliant. Yet compliance is often a high value in professionals' assessments of how well we are doing. Being a good patient becomes more important than getting well. It's like the healthy woman/healthy person dilemma. Psychological researchers have found that while emotionally healthy adults, gender unspecified, are supposed to be assertive and ambitious, emotionally healthy women are supposed to put others' needs before their own. If you're a woman and fulfill the stereotyped "woman's role," then you're not an emotionally healthy person. If, on the other hand, you are strong and assertive, then you can be labeled as not being an emotionally healthy woman.

Getting better, we were informed by staff, meant following their visions of our lives, not our own. Let me give you an example, from a book called Reality Police by Anthony Brandt:

[Brandt says] I was thought to be a hopeful case, for example, so the doctor assigned to it worked up a life plan for me...I was to stay in the hospital three months or so to stabilize my life, she said. When I seemed up to it, I would go to work in the hospital's "sheltered workshop" where I would make boxes for IBM and be paid on a piecework basis. When I had made enough boxes I would then be moved to the halfway house in Kingston, across the Hudson, where they would arrange a job for me in a special places called Gateway Industries established for the rehabilitation of mental patients. There I would presumably make more boxes. Eventually I might move out of the halfway house into my own apartment.

What Anthony Brandt's doctor didn't know was that Brandt was not a "mental patient" at all. He was a writer who had feigned the symptoms of mental illness in order to find our first hand what the life of a mental patient was like. He had a successful career and a real life that he could return to. He didn't have to accept limited view of his abilities as potential. Most real mental patients are not so lucky.

Anthony Brandt wrote his book in the mid '70's, but what happened to him unfortunately continues to happen today. All those "unmotivated clients" I keep hearing about are the ones who are on a silent sit-down strike about others' visions of what their lives should be like. When I ask professionals what it is that their clients are "unmotivated " about, it usually turns out to be washing floors or dishes, on the one hand, or going to meaningless meetings on the other. Would you be "motivated" to reveal your deepest secrets to a stranger, for example, someone you have no reason to believe you can trust with this sensitive information? And, more important, should you be "motivated" to do so? People, in general, are motivated to do things that they want to do, or which will get them things which they want. Just because someone has a diagnosis of "mental illness" doesn't change that fundamental fact of human nature. All the time and energy that mental health professionals seem to put into "motivating" their clients to do things they don't want to do would, I think, be better spent helping clients to figure out what things they want for themselves, and the strategies to achieve them.

We need to start encouraging people to dream, and to articulate their own visions of their own futures. We may not achieve all our dreams, but hoping and wishing are food for the human spirit. We, all of us, need real goals to aspire to, goals that we determine, aims that are individual and personal. I feel crushed when I visit programs that are training their clients for futures as residents of halfway houses and part-time workers in menial jobs. And if I, a visitor, feel my spirit being crushed, how do the people trapped in those programs feel?

Researchers have asked clinicians what kinds of housing, for example, their clients need, and been told that congregate, segregating housing was the best setting. At the same time, the researchers have asked the clients directly what kind of housing they want, and been told that people would choose (if they were given the choice) to live in their own homes or apartments, alone, or with one other person they had chosen to live with. At the end of the year, the researchers found, the clients who got the kind of housing they wanted were doing better than the clients that got the housing that was thought to be clinically appropriate. Helping people to reach their goals is, among other things, therapeutic.

One of the reasons I believe I was able to escape the role of chronic patient that had been predicted for me was that I was able to leave the surveillance and control of the mental health system when I left the state hospital. Today, that's called "falling through the cracks." While I agree that it's important to help people avoid hunger and homelessness, such help must not come at too high a price. Help that comes with unwanted strings - "We'll give you housing if you take medication," "We'll sign your SSI papers if you go to the day program" -is help that is paid for in imprisoned spirits and stifled dreams. We should not be surprised that some people won't sell their souls so cheaply.

Let us celebrate the spirit of non-compliance that is the self struggling to survivor. Let us celebrate the unbowed head, the heart that still dreams, the voice that refuses to be silent. I wish I could show you the picture that hangs on my office wall, which inspires me every day, a drawing by Tanya Temkin, a wonderful artist and psychiatric survivor activist. In a gloomy and barred room a group of women sit slumped in defeat, dresses in rags, while on the opposite wall their shadows, upright, with raised arms and wild hair and clenched fists, dance the triumphant dance of the spirit that will not die.

Chamberlin, Judi. Journal of Psychosocial Nursing and Mental Health Services, 36(4), 49-52 (1998).



                         Tanya Temkin

 

             
                            Judi Chamberlin


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