Agency in Illness and Recovery

Alice Rogan, MD, PhD
Jon G. Allen, PhD
Senior Staff Psychologist at The Menninger Clinic and the Menninger Department of Psychiatry and Behavioral Science at the Baylor College of Medicine
Richard L. Munich, MD
Former Chief of Staff at The Menninger Clinic
Alice Rogan, MD, PhD
Former Staff Psychologist for the Menninger Hope Adult Program

We’re convinced that willingness to accept agency for your illness lies at the heart of benefiting from psychiatric treatment. The idea of accepting agency for your illness requires some mental juggling, because agency and illness are mutually exclusive concepts. An agent is an originating cause; agents initiate action. As an agent, you make things happen. In contrast, illness happens to you. Agency involves active doing whereas illness involves passive suffering.

Yet being ill doesn’t preclude agency. You’re ill and you’re an agent. We’ll encourage you to appreciate the potential role of agency—your own actions—not only in recovering and remaining well but also in the development and maintenance of your illness. Our perspective offers hope: enhancing agency is empowering, and agency is a cornerstone of hope.



Agency
Agents initiate action—intentional, goal-directed behavior. Animals are agents, and we humans are self-conscious rational agents. Agency implies will, autonomy, freedom, choice, and responsibility. As self-conscious rational agents, we’re aware of acting on the basis of reasons. A caveat: We’re
potentially self-conscious and rational agents. We’re not always aware of reasons for our actions, and much of the time as we go about our daily activities we need not reason deliberately about what we’re doing. When we get into difficulty, however, we must become more self-aware so as to enhance our agency and thereby exert greater control over our actions.

A key point: agency is not an all-or-none phenomenon; it’s a matter of degree. To varying degrees, your agency—your freedom of choice—is limited by
constraints. Your agency can be constrained by anything that limits your range of choices or possibilities. Illness constrains agency to varying degrees. When you become ill—depressed or addicted, for example—your constraints expand and your agency diminishes. Yet, thinking in terms of degree, we don’t want to exclude agency entirely when considering constraints. No doubt, your agency can be completely undermined; for example, you can be immobilized by profound depression. But generally your agency is diminished, not entirely eradicated by illness. Being depressed, you can be sluggish without being utterly paralyzed.

A crucial point: you must distinguish between difficult and painful choices and no choice. When you’ve become ill, the challenge is to use your remaining agency to get well and to increase your range of freedom and choice. You can build agency on agency; the more you recover, the easier it becomes to recover further.



Illness
Sociologist Talcott Parsons introduced agency into the domain of medicine by construing illness not only as a physical condition but also as a social role. Being ill, you’re legitimately excused from social and occupational obligations. Being ill, you also incur obligations. To remain legitimately excused, you must seek and cooperate with treatment so as to become well as soon as possible. Here’s his most important point for our purposes: when you’re ill, you cannot recover by a mere act of will.

Don’t lose sight of this point as we nudge you toward adopting greater agency for your illness. Think of it this way: you cannot recover by one monumental act of will, but you can recover by many acts of will over an extended time period. Recovery is especially difficult, of course, when you’re affected by an illness like depression that saps your energy. Recovering on your own can be well nigh impossible; then you’ll need help from others. Effective agents avail themselves of help when they need it.



Responsibility and Blame
Reading this article, you might be feeling defensive. Here’s the potential wrong turn in the line of reasoning we’ve proposed: Agency entails freedom of choice, and freedom of choice entails responsibility. By implication, as the agent, you’re responsible for your illness. Being held responsible, you might resent being blamed for something that’s not in your control and not your fault. Alternatively, accepting responsibility for your illness, you might adopt a self-punitive attitude.

We believe this experience of feeling misunderstood and unjustifiably blamed happens all the time to persons with psychiatric disorders, and such blame is one of the elements contributing to stigma. Furthermore, even if you don’t feel blamed by others, you might blame yourself. The problem of responsibility and blame is the main reason for the careful thought we’re giving to the challenge of accepting agency for psychiatric illness. We’re aiming for empowerment, not condemnation.

Agency, Responsibility, and Moral Judgment
We can’t avoid value judgments. As you well know from having struggled with psychiatric illness, to the extent that you’re perceived as a free agent—making choices and thereby held responsible for your depressive withdrawal, manic spending sprees, compulsive rituals, or addictive behavior—you’ve been judged; perhaps resented, criticized, and blamed. Even if you’ve been spared from others’ criticism, you might have berated yourself.

Recognize that we’re grappling with a problem that’s long bedeviled the social view of psychiatric disorders. Are these true illnesses or moral failings? Alcoholism is the most glaring example: disease or sin? How about depression: illness or laziness? We must take this bull by the horns. That’s because, short of being unconscious, you’re an agent. Gaining a sense of power over illness demands agency, and agency entails moral evaluations.



Striving for Balance
Being unable to escape value judgments, it’s crucially important to judge properly: we must evaluate the degree to which illness constrains agency for any given person at any point in time. Consciously or unconsciously, patients, family members, and mental health professionals make more or less educated guesses about the extent to which illness constrains agency, and moral judgments accompany these estimations. For example, being depressed, you might retreat to your bedroom rather than joining the family gathering. Some family members might feel hurt and critical (you don’t care enough to make the effort); others might be more sympathetic (you don’t have the energy because you’re so depressed). Such judgments are difficult to make—even for the depressed person.

Walking a tightrope in relation to agency, we can make two serious mistakes: taking responsibility for things we can’t control, and failing to take responsibility for things we can control. The venerable serenity prayer captures the challenge: “God grant me the serenity to accept the things I cannot change, the courage to change things I can, and the wisdom to tell the difference.” We must strive to get the extent of agency and responsibility right; we need knowledge as well as wisdom. Historically, we’ve tended to underestimate the role of illness, erring in the direction of blaming persons for actions over which their control was more limited than we knew. In trying to judge the extent of agency and illness, only one thing is fairly certain: We’ll get it wrong if we think in terms of absolutes—either agency without constraint or no agency at all.

Compassionate Criticism
Here’s the tightrope we walk: Can we increase the sense of agency—and responsibility—for illness without invoking blame and condemnation? We’re not attempting to avoid all criticism; on the contrary, we encourage constructive criticism.

Being morally responsible for actions with harmful results implies that you reevaluate and change; it does not require that you suffer or be punished as a consequence. Self-reproach and guilt feelings can motivate constructive change; yet many persons struggling with psychiatric disorders already feel a crushing sense of guilt and shame. Overpowering shame will undermine agency, whereas we aspire to enhance it. Ideally, appreciating the full extent of your agency in your illness, you’ll feel challenged, not reproached.

We’ve taken pains to sort out the moral perspective in relation to degrees of agency and constraints to set the stage for you to consider the extent of your active role in creating and perpetuating your illness. If we’ve succeeded, you’ll be thinking open-mindedly in terms of degrees, moving from self-reproach to constructive self-criticism tempered with common sense and compassion for yourself, all for the purpose of taking up the challenge of recovering and remaining well.



Agency in Illness
Agency entails an active, although unwitting, role in becoming ill and in remaining ill. We’re into the realm of unconscious motivation here, and an important part of treatment is to make the unconscious conscious, thus expanding the scope of agency.

Agency in Creating Illness
Most often, whatever active role we play in creating illness is unintentional. Yet we must bring this active role to light. If, in hindsight, you can discern how your thoughts and actions played a part in creating your illness, you can better avoid re-creating it in the future in the form of a relapse or recurrence.

Depression is a good example. Some of the stress that contributes to depression is unavoidable—losses and hardships too numerous to contemplate. Yet a substantial amount of stress that contributes to depression is at least partly self-generated; some degree of agency is involved. Prime examples are recurrent interpersonal conflicts and a self-chosen stressful lifestyle.

Of course, you don’t work yourself to the bone and sacrifice your own health for the purpose of becoming depressed, just as the prospective alcoholic doesn’t start drinking for the purpose of developing alcoholism. Yet, looking back and taking stock of your life, you could see your illness as an unwitting creation; an agent was involved, namely, you. Your unwitting actions played some part in the development of your illness.

To repeat, the purpose of discerning the role of agency in creating illness is not to assign blame but rather to expand your realm of control. Thus it’s helpful to consider the possibility that, coupled with your biological vulnerabilities, your actions—drinking when upset or engaging in behavior that contributes to stress pileup—unwittingly put you into an ill state that undermined your agency. In treatment, you can translate hindsight into foresight, taking actions that promote health and refraining from actions that increase the risk of illness.



Agency in Perpetuating Illness
Having become ill, you’re suffering, and you want to become well. This obvious premise overlooks a paradoxical phenomenon, resistance to treatment. Examples of resistance are numerous, ranging from forgetting to take medicine to avoiding discussing painful but crucial topics in therapy sessions. Such actions, witting or unwitting, run contrary to exerting agency in the service of recovery. When unwitting, we look for unconscious motivation and try to bring it to light, so as to expand the realm of agency, removing obstacles to recovery.

To illustrate, consider resistance to recovering from depression. Despite the painfulness of the illness, many persons struggling with chronic depression feel ambivalent about recovery. Depression is typically a response to a huge pileup of stress—a kind of collapse or crash. The depressed person withdraws, isolates, and retreats. Recovering from depression entails facing what seemed to be insurmountable problems and putting yourself back into the arena of stress. And recovery also commonly requires that you decrease stress, sometimes having to make painful decisions that entail losses, such as giving up valued activities or positions. Furthermore, reducing interpersonal stress often requires confronting conflicts in relationships. Depressive retreat, although it entails suffering, feels safe in its sheer familiarity. It’s a “comfortable” cocoon. Hence depressed persons may simultaneously desire to recover and fear recovery owing to all the challenges recovery entails.

Thus there’s some validity to the idea of choosing—however ambivalently or unconsciously—to remain ill. In this instance, your actions oppose treatment; more or less unwittingly, you use your agency to block change. Illness has its benefits, and health has its costs. Change is always anxiety provoking, especially when old patterns have had considerable survival value. But you’ve sought treatment with the intention of recovering and, however large or small a role it has played in the development and perpetuation of your illness, agency will play a paramount role in recovering and remaining well.



Agency in Recovering and Remaining Well
If you’re severely injured and immobilized in a car wreck, you must be transported to the emergency room, perhaps needing a blood transfusion and surgery. Some degree of recovery may be needed before you can adopt any meaningful sense of agency. The same applies to severe depression and to addiction, as well as a wide range of other psychiatric disorders. You may be so ill that the concept of agency hardly applies. Most often, however, you’re not totally incapacitated, and you’re able to become the agent of your recovery—with help from others.

Agency in Finding Treatment
In the face of hard-to-diagnose symptoms, you might need to exert considerable effort over an extended period of time to find proper treatment. You’ll need to find a doctor and perhaps to seek out experts and investigate specialized treatment centers. You may need to take distressing or painful diagnostic tests. Throughout the process, you’ll need to provide a history of your illness and records of previous diagnostic and treatment interventions. You’re likely to be grappling with dauntingly cumbersome insurance matters. And you’ll need to do all this when you are ill—perhaps apprehensive, frustrated, and exhausted. Seeking help calls upon agency. Having found treatment, take credit for all you’ve done on your behalf. Seeking treatment voluntarily exemplifies agency and may be the single most crucial action you take.

Agency in Taking Medication
Given the potential ordeal of figuring out what’s wrong and finding appropriate treatment, you might have had enough of agency; you just want to be fixed! Most often in modern psychiatry, this wish is expressed in the desire to find the proper medication. Psychiatrists share this desire with their patients.

Notice, however, that agency plays an important role here. Medication can’t help you if you don’t take it. Agency often fails at this juncture; medication compliance in all areas of medicine is notoriously poor. Yet, difficult as it may be, taking medication as prescribed fails to do justice to the extent of agency involved. Not infrequently, you and your psychiatrist often will need to experiment with different medications and doses. You’ll need to endure and keep track of side effects, reporting them to your psychiatrist. You’ll need to keep track of benefits. And you may need to do all this over a long time. Moreover, you’re likely to be encouraged to continue on medications for some time after your symptoms have abated. Such persistence is admirable, and you can give yourself credit for it.



Agency in Hospital Treatment
Having serious psychiatric disorders typically requires participation in a range of treatment interventions beyond medication, and such participation places an even higher premium on agency. Taking inpatient treatment as a model, you might participate in individual and group psychotherapy, educational groups, family therapy, and a range of therapeutic activities. If you’re struggling with an addiction, you’ll work hard in a 12-step program that encourages you to take ownership of your illness and to work the steps actively. And then you’ll need to participate in formulating a discharge plan and a wellness plan.

Central to all psychotherapeutic modalities, and a major determinant of treatment outcome, is a therapeutic alliance, which we’ve construed as
active collaboration toward goals established with your therapist. Psychotherapeutic treatment requires active self-exploration, which requires considerable courage. And participation in treatment entails active efforts to change longstanding patterns of behavior. You must actively confide in your therapists and fellow patients, likely revealing painful concerns. You’ll need to work on altering ingrained patterns of thinking. And you’ll need to experiment with new ways of interacting with others. All your efforts to change will run up against emotional barriers—resistances.

To appreciate the role of agency in psychotherapeutic treatment, you might consider an analogy with obtaining a college education. You could go to college, plunk yourself down in a classroom, and take the attitude: educate me! But all education is ultimately self-education; you must actively acquire knowledge. In the process of self-education, you need the help of knowledgeable experts—teachers and mentors. So it is with psychotherapeutic treatment. You engage in self-healing with the benefit of expert guidance.

Agency in Wellness
Many psychiatric disorders tend to be recurrent. Mood disorders and substance abuse are prime examples. By taking agency for your illness, you can increase your odds of staying well. Continuing to take maintenance medication and seeking psychotherapy and family treatment as needed play an important role in staying well.

But preventing recurrence of psychiatric disorders requires more than continued psychiatric treatment. Stress management, for example, is crucial in wellness; you’ll need to weave it into your lifestyle. Your physical health plays a major role in your resilience to stress—your ability to cope without falling ill. Sleeping and eating well, exercising, refraining from smoking and excess use of caffeine and alcohol, all play an important role. Maintaining supportive close relationships plays a crucial part in wellness. Being active on your own behalf to maintain good health—physical, mental, and spiritual—is extremely important.

Agency in Hope
We noted at the outset that, in being empowering, agency affords hope. Hope requires a marriage of emotion and reason. Psychiatrist Karl Menninger, for example, construed hope as involving a motive force (emotion) for a plan of action (reason) that has prospects of succeeding. With increasing agency to overcome the constraints of illness, you’re freer to move forward along this path. The most important ingredient of hope is the feeling, “I can do something about this!” That’s agency.