A Guide For People With Controlled Manic-Depressive Disorder
Author's Note: I drafted this unpublished guide in the mid-1970s, within three years of beginning to use lithium to control periods of disabling depression and socially-devastating elation. At the time, I was in my second year of a Ph.D. program in anthropology at the University of Oregon. Although the guide was never developed fully, the process of thinking through issues related to my major change in my expectations --control of an illness that for me had recurred undiagnosed for 18 years--led me to found and co-organize Lithium Interchange, a support organization for myself and others. Anthropologists Richard Chaney and Pamela Amoss encouraged me in these efforts. At the time what is now called bipolar disorder was referred to as manic-depressive disorder. To remind readers that this document (edited recently for flow) was written twenty years ago, I have kept the earlier term for the illness, but have usually changed the term doctor to the word physician for the benefit of medically trained readers. I intend either term to include psychiatrists. As you will see, the guide was written for a double audience, people with the illness and the people responsible for treatment. At the time, I thought writing in the third person appropriate for credibility. I have revived this early effort so that readers can see for themselves what has changed and what is still timely. What needed spelling out twenty years ago does not necessarily need explanation now. Still, despite (or even because of) the increased use of medication by people with bipolar disorder, I was surprised to find the opening paragraph seems as timely now as it did the spring I wrote it. I would be delighted to receive comments on all or any part of this guide and will respond.
Manic-depressive disorder (also known as bipolar affective disorder is an uncommon condition occurring in about one of two thousand people in the United States. Many people with manic-depressive disorder have never met another person with the condition. In addition, professional assumptions about its cause and treatment have been in flux over the past fifteen years in this country. Even with lithium established as the treatment of choice for the majority of cases, professional attitudes and behavior toward with person with controlled manic-depressive disorder vary. It is to fill the gap of partial information and uncertainty that this guide is presented and with the hope it will stimulate further thought and action. Implications of the disparity between physical and social recovery pervade this whole guide. At this point, the main emphasis is on the value of sharing some of these post-control experiences. A second point to keep in mind is that each person is an individual who sees his changed position in the world from his own perspective of hopes, abilities and commitments.
1. The Difference Between Physical And Social Recovery; The Pace Of Social Recovery
For most people diagnosed as having manic-depressive disorder, lithium prevents recurrence of unusually prolonged or intense moods which probably have a biochemical basis. Social recovery is a more subtle process, however, often extending over a period of years. Meanwhile, the person with controlled manic-depressive disorder is likely to resume interrupted plans, make new ones, or experience changes in relationships. This is an interesting period for most people, sometimes stressful, and often made unnecessarily difficult by the lack of opportunity to discuss experiences with others who have shared what is happening with others who have gone through similar experiences.
2. The Role Of Physicians
Physicians who treat people with manic-depressive disorder face a drastically changed situation once the person's symptoms are controlled. There are many schools of thought and professional styles in dealing with this change. What the physician can and should do beyond prescribing for the controlled manic-depressive, and perhaps monitoring the person's mood and keeping informed of side-effects is an open question to which there are many answers, depending in part on the expectations of the person with manic-depressive disorder and in part on the doctor's training. [See also recommendation 13?]
3. The Importance Of Gradually Exposing Basic Worries
The major healing forces in a person's life must come from non-secretive, non-expert resources if he or she is to regain self-confidence and the courage to express strong emotion. Occasionally, a physician feels too responsible for a patient. The person who fears he is in this type of therapeutic relationship should seek out friends or relatives who have experience with the medical system in order to discuss such doubts and perhaps change doctors. Judging from the interviews [involving eight self-selected people] a person with controlled manic-depressive disorder is likely to find that his or her treatment following control of the episodes is likely to underplay the most basic illness-related worries.
4. The Usefulness Of Extending Relationships
A healthy person who is highly dependent on his family and his doctor is an anomaly in our society. Although research findings are mixed, it may be that married people with controlled manic-depressive disorder are more likely than others to divorce or separate perhaps because of their high hopes for how others will behave in the changed situation. Young people may find themselves unusually dependent upon their parents as a consequence of disturbed periods. People in both categories need to feel they have other social supports in their lives besides close relatives and their doctor. In fact, active efforts to extend relationships in the community may lessen pressure on relationships with relatives and improve such relationships. Recommendation for people with controlled bipolar disorder: People with controlled manic-depressive disorder should seek out people or groups where they feel reasonably comfortable in order to feel under less pressure at home and with their doctor.
5. Extending The Range Of Your Acquaintances In The Year Or Two Of Behavior
People are likely to lose friends as a result of earlier behavior while they were manic or depressed which has frightened these people. Some of these breaches may never heal. Others will, given time. Creating new relationships in the year or two after your disorder is controlled is especially important if you have lost friends in the process. One way to supplement the usual ways that people make new acquaintances is to join a mutual support group for manic-depressive or depressed people or help start one. This is a new idea with few groups in existence. People who have experienced manic and depressive episodes and their consequences have a basis of shared experience that can lead to trust, sharing and responsiveness. They thus have a real basis for friendship. They may also be the best teachers for each other and very able in the healing role as a result of their experiences. In addition, as they do not have the responsibility for monitoring anyone's mood or lithium level, they are likely to feel freer than physicians to respond to people as people, not as patients, threats, or time bombs.
6. Re-Experiencing Emotion
Associated with the abnormally intense or prolonged moods and behavior patterns of manic-depressive disorder are intense experience of pain, rage, elation, anxiety, and despair. The uncomfortable social experiences of the person's being out of touch with "normal life" cannot be wished away. Most people with manic-depressive disorder feel ashamed of some things that have happened. Too much suppression of emotions can affect self-confidence. Gradual re-exposure to relatively harmless social discomfort is an important aid to recovery.
7. Indirect Ways Of Experiencing Emotion
In the past fifty years, our society has typically offered little outlet for people who have learned through personal crisis, especially mental illness: People who have survived severe mental illness acquire strengths gained through painful experience to contribute to others. Great literature, music and art stem from the artist's ability to find a correlate of intense emotion and express it in a form that links it with his or her audience. People who have experienced hypomania, near-suicide or periods of numbing inarticulateness have inevitably been in touch with deeply experienced pain, rage, despair and joy and may find intense relief in coming across a well-written murder tale or folk song, for example, that links these emotions to ordinary life. Murder, after all, is rare but engaged in by ordinary people and loneliness painful for anyone. The person with manic-depressive disorder who is primarily an artist, in the most general sense of the word, may have to come to terms with the risk his episodes create if they seem worthwhile as a source of creativity. However, it may be that better social recovery would also sustain creativity.
8. The Role Of Curiosity
People with manic-depressive disorder vary in their degree of curiosity about their disorder. The curiosity is as natural as an adolescent's interest in sex. Psychiatrists are not necessarily as curious about the disorder as those who suffer from it. Not all are well informed, having more experience treating other conditions and problems. People with manic-depressive disorder can benefit from seeking out alternative sources of information, partly so they can ask doctors the right questions.
9. Social Experiences That Facilitate Recovery
The people interviewed found support in a variety of ways that promoted recovery: a new intimate relationship, participation in the life of a Zen monastery, active participation in a political action group, moving to a new community, and talking over psychotic and post-psychotic experiences with another person who had been through similar experiences, and in several instances, having a therapist on whom they could rely. Feeling part of a group that articulated some of a person's basic values had therapeutic as well as other meaning for most of the people interviewed. Moving, although not necessarily done for therapeutic reasons, was seen as having therapeutic value--perhaps partly because the move reduced the person's need to explain his past. Seeing a credentialed therapist is seen by some people with manic-depressive disorder as very important after symptoms are controlled.
10. The Curative Power Of Shared Experience
Our society, unlike many pre-literate societies of the recent past, does not utilize the healing power of the former sufferer whose symptoms are under control. People with controlled manic-depressive disorder constitute an insufficiently utilized reservoir of social healing.
11. A Brief Look At A Common Myth
Although people with manic-depressive disorder are sometimes said "to lack insight" into their condition, the people interviewed seem to have a high degree of understanding of the long-term effects of their past and present condition, given the solitariness that social norms, over-reliance on professional treatment, and caution had generated. At most, the experiences of manic-depressive disorder produce significant (but not total) lack of insight while in full bloom and pain-avoidance in the aftermath. People who have experienced manic-depressive disorder are likely to be as reasonable as anyone else in guiding another through social recovery. Often they are more likely to know what is troubling another manic-depressive than someone who is a professional "expert." Finally, in a group, they are likely to balance each other in overgeneralizing from individual experiences.
12. Two Responses To Manic Depressive Disorder
Some people who have been through episodes of "manic-depressive" disorder want to "forget" about it and get on with their lives; others actively want to meet others who have shared similar experiences. With written permission, a doctor should feel free to give a person's name to another person suffering from the same condition. This can lead to productive friendships otherwise unlikely to occur and sometimes to formation of larger groups.
13. Matching Doctor And Patient
Psychiatrists differ in their styles of treatment for manic-depressive disorder. Free discussion of these differences among people with the disorder should lead to a better match between doctor and patient and to lessening unrealistic dependence on the doctor.
14. The Pharmacist's Role
Some observant pharmacists notice changes in customers taking lithium. Their potential therapeutic effectiveness is, however, probably underused. Pharmacists should be encouraged to talk a bit with customers who come in regularly for lithium if the occasion arises. Sometimes the customer learns an important fact about the drug he takes or hears it re-emphasized. The expressed interest of a pharmacist may also give the person the chance to be more open about his condition than with a doctor upon whom he feels highly dependent.
Two additional topics, learning to distinguish side-effects and learning about long-term effects of lithium were listed but not developed.
You have been reading a draft guide for people with Bipolar Disorder (then called Manic-depressive disorder) written in the mid-1970s by Rochelle Cashdan, Ph.D. while studying for her doctorate in Cultural Anthropology. She says some of her views have changed or become more complicated over twenty years, but many remain the same. She continues to believe that the expressive and social consequences of Bipolar Disorder receive too little attention, perhaps because they lie outside the classical medical tasks of diagnosing and prescribing. Rochelle would be delighted to receive comments on particular ideas or The Guide in general and will respond directly or post a summary depending on the number of responses she receives.
Last reviewed: By John M. Grohol, Psy.D. on 26 May 2013
Published on PsychCentral.com. All rights reserved.