Human beings are reluctant to recognize a problem unless they know that something can be done about it.

Everybody has moods. Moods, for most people, swing according to a reason, a stimulus from the environment outside of us or the environment inside. You lose your job, you're depressed — you feel saddened, you lie around the house listlessly, you aren't interested in food, sex or much of anything else. You get a new job — you're on top of the world, you hug everyone you know and a few people you don't, you're a whirl of activity. Or you and your friends are having a picnic by the lake. Everyone else is laughing and playing. You start remembering happy times with your grandmother in her house by the lake — the grandmother who died last week — and you become quiet and sad.

Energy levels also change according to circumstances. In an emergency, your adrenaline shoots up and you accomplish many times more than you thought you could. After the emergency is over, you may crash into grief, anxiety, and fourteen hours of bedtime.

But imagine your moods and energy levels swinging wildly on their own, with no relevance to anything going on or to any of your intentions. You initiated a major project at work, you've been put in charge of it, you are happy and excited — until you wake up one morning totally disinterested in even getting out of bed. If you are able to drag yourself in to work, you have to fake interest solely because you know mentally that you care. You can't feel it. Keeping your eyes open is a major effort.

Or you are with a friend you care about very much, who has just lost his father. You keep breaking into giggles. You hate it, you hate yourself, but you can't help it. You are distracted by things like the headlights of a passing car swinging over the ceiling and making the tiles sparkle. You remember plots of old "Father Knows Best" episodes. You remember every bad joke you ever heard or made up about fathers. You can't stop your mouth from running.

These are mild versions of bipolar disorder. You may hear your name spoken everywhere in a crowd, be certain that strangers are coming at your back with knives, attack the clerk in the grocery store because her tone of voice was hateful to you — or be unable to stop crying, unable to stop gouging the pain out of your flesh with a razor, unable to keep yourself from the edge of the bridge.

You may experience a depression, what seems like a temporary "slump", a "burnout." But it goes on, and on.

So we have numerous scientific studies, support groups, and medications. But there are still many people who go undiagnosed or wrongly diagnosed for years; there are people who, forty years after their original diagnosis, have still not found effective medication; there are people who have lost jobs, families and friends as a result of their illness. Or lost their lives — cutting their wrists in a deep depression, or leaping off the Empire State Building with a bright green umbrella in a fit of mania.

Treatment is easier and more promising for people whose disease is identified early — for mood disorder or any other condition. Health statistics are better, regardless of specific conditions, for people who take an active part in their own care, and become knowledgeable about their own health. Anything that affects us is easier to handle when we understand it better — and that includes mood disorder.

Bipolar disorder is easier to identify when it's extreme. My mother was "unipolar" — she cycled between "normal" and extreme mania. (There are also unipolar depressive disorders.) I remember her standing naked in the living-room at three-o-clock in the morning screaming about the demons coming in through the walls.

But even with this extreme behavior, she was only diagnosed when she began doing it in front of strangers. Human beings are reluctant to recognize a problem unless they know that something can be done about it. Many generations have lived with "difficult" or "moody" spouses, parents or children because "that's just the way they are" — and nobody knows how to change it.

People whose bipolar cycles are less extreme and dramatic are likely to go much longer before diagnosis and treatment. There are family accounts of my behavior from as early as three years old indicating cycles of being the outdoing, active commander of the block alternating with cycles of being slow, dreamy and withdrawn. I was constantly called "The Absent-Minded Professor." My absent-mindedness ran in cycles, also, which made it especially frustrating for myself and others. My mother used to shout, "You can remember when you try!" and I would try, and try, and try ... but sometimes it worked, and sometimes it didn't.

For a number of years my sister and I were separated geographically. During that time she got a masters degree in psychology and also made an extensive study of our family history. When I visited her again, we had a long, wonderful, intimate talk — and I woke up the next morning distant and disconnected, "wandering around like a zombie" as she put it. She told me "not all manic depressives are like Mom" and persuaded me to go to a doctor. I was lucky to connect with one who was acquainted with "Bipolar II", the form of mild and sometimes anomalous mood-swings I experienced. (I can for instance, go to the doctor in a deep depression, describe it to him lucidly, and joke and laugh about it.)

One place to get good information on the varieties of mood disorder is Dr. Ivan Goldberg's Depression Central

You can find online screening questionnaires for bipolar disorder and for depression at the National Depressive and Manic-Depressive Association

The National Alliance for the Mentally Ill, NAMI, has a great deal of information about mental illness which may be helpful

You think you may have a mood disorder. Now what? The next step, for most people on insurance programs, is to consult with your medical doctor. Explain what you are experiencing and why you believe it is a mood disorder, and that you want to seek treatment. Your medical doctor will give you a referral to a psychiatric doctor.

A good doctor is one who:

• takes time to listen to you,
• regards your opinion on your own experiences and treatment as important,
• makes an accurate diagnosis,
• prescribes appropriate and effective treatment,
• is aware of the need for non-medical support for both you and your family and can make helpful referrals for that.

Finding a good doctor is a crap shoot. This is true in any matter, but it is even more difficult in the area of mental health because of an almost universal tendency to immediately devaluate the testimony of someone with a mental illness, even if the diagnosis is not yet confirmed. There are people who have been treated for years with the wrong medication because a doctor refused to believe their own reports of its effects. Sometimes this has been fatal.

One member of the bipolar disorder support list I subscribe to got a doctor referral from Peter Whybrow, author of an excellent book on bipolar disorder. Seeking referrals from people with such credentials is a great thing when you can get it. Dr. Ivan Goldberg, of the Depression Central site, is also willing to recommend a reputable University clinic in your area, which increases the level of accountability your doctor will be subject to.

It can greatly improve a patient's chances for effective treatment and long-range survival if their family is supportive, stays in communication with their medical personnel, and is willing to challenge the doctors when necessary.

I'm going to share something very painful. My mother was treated with Thorazine during her manic episodes even after she had been diagnosed with multiple myaloma, a type of cancer, in which Thorazine is specifically contraindicated because it creates extra stress on the spleen. Mom had tried for years to tell the doctors that she had terrible side effects from the Thorazine, including bleeding from the nose and ears. The doctors told us, her family, that she was delusional, this simply wasn't happening, and she "needed the Thorazine." Mom fought her multiple myaloma into remission several times, living longer than 98% of the people diagnosed with that particular disease, but eventually died of failure of the spleen. It was ten years later that we learned about the side effects of Thorazine and its contra-indications — and the guilt hit.

There are questions developed by NAMI (National Alliance for the Mentally Ill) for patients to ask their doctor. If the patient cannot ask these questions, a family member should ask them for her:

1. What is your diagnosis? What is the nature of this illness from a medical point of view?
2. What is known about the cause of this particular illness?
3. How certain are you of this diagnosis? If you are not certain, what other possibilities do you consider most likely, and why?
4. Did the physical examination include a neurological exam? If so, how extensive was it, and what were the results?
5. Are there any additional tests or exams that you would recommend at this point?
6. Would you advise an independent opinion from another psychiatrist at this point?7. What program of treatment do you think would be most helpful? How will it be helpful?
7. Will this program involve services by other specialists (i.e., neurologist, psychologist, allied health professionals)? If so, who will be responsible for coordinating these services?
8. Who will be able to answer our questions at times when you are not available?
9. What kind of therapy do you plan to use, and what will be the contribution of the psychiatrist to the overall program of treatment?
10. What do you expect this program to accomplish? About how long will it take, and how frequently will you and the other specialists be seeing the patient?
11. What will be the best evidence that the patient is responding to the program, and how soon will it be before these signs appear?
12. What do you see as the family's role in this program of treatment? In particular, how much access will the family have to the individuals who are providing the treatment?
13. If your current evaluation is a preliminary one, how soon will it be before you will be able to provide a more definite evaluation of the patient's illness?
14. What medications do you propose to use? (Ask for name and dosage level.) What is the biological effect of this medication, and what do you expect it to accomplish? What are the risks associated with the medication? How soon will we be able to tell if the medication is effective, and how will we know?
15. Are there other medications that might be appropriate? If so, why do you prefer the one you have chosen?
16. Are you currently treating other patients with this illness? (Psychiatrists vary in their level of experience with severe or long-term mental illnesses, and it is helpful to know how involved the psychiatrist is with treatment of the kind of problem that your relative has.)
17. What are the best times and what are the most dependable ways for getting in touch with you?
18. How do you monitor medications and what symptoms indicate that they should be raised, lowered or changed?
19. How familiar are you with the activities of the National Alliance for the Mentally Ill (NAMI) and your state alliance?

National Alliance for the Mentally Ill (NAMI) primarily focuses on the families of mental health patients. There are other organizations of mental health clients themselves, often referring to themselves as "mental health survivors." These organizations campaign against abuses in the mental health system, and for patients' rights. They also have information on taking charge of your own care and treatment.

• Support Coalition International
• The Depressive and Related Affective Disorders Association; Johns Hopkins Hospital

To me, a doctor who is focused on helping a patient become more functional and self-responsible will encourage the patient's participation in their own treatment. Medical studies have also shown that patients who are knowledgeable about their own health and treatment, and make decisions about their own health and treatment, recover better and stay healthy more. Read. Learn as much about the illness, the medications, and alternative treatments as you can possibly absorb.

The very first time I was diagnosed, the psychiatric doctor gave me Lithium — and did not tell me about possible side effects, or that my kidney, liver and thyroid function would have to be monitored for the rest of my life for possible damage. As soon as a friend — who was passionately against all psychiatric medications — told me about these hazards, with medical references, I became frightened and stopped taking the Lithium, until a lengthy and severe depression forced me back to the doctor.

To be fair, it is possible that my first doctor did explain all this to me and it didn't register at the time. I describe my pre-Lithium state as The Great Gray Fog. My brain was either running a mile a minute or wrapped in cotton batting, and in both states I was out of touch with the immediate environment. The second time I sought help, I had more social support to help me.

Book References
• An Unquiet Mind, A Memoir of Moods and Madness, Kay Redfield Jamison
• Living Without Depression & Manic Depression, A Workbook for Maintaining Mood Stability, Mary Ellen Copeland
• A Brilliant Madness, Living with Manic Depressive Illness, Patty Duke & Gloria Hochman
• Questions and Answers about Depression and its Treatment, Dr. Ivan Goldberg
• Overcoming Depression, revised edition - Demitri Papolos, M.D., & Janice Papolos

A great deal of what I have learned about bipolar disorder has come from support groups of other bipolars — in particular, the online support group Pendulum, which has extensive resources at their website — pendulum.org

There is no standard chart on which the doctor will look up your symptoms, calibrate by your weight, and dispense a set combination on pills which will make all the problems go away. You may go through a lot of trial and error to find a combination of medications that works. You may never find one that works completely. You may find something besides medication that works for you. The main thing is, keep trying. Decide to live, and do whatever it takes for you to stay alive.

Also critical to survival is hope. Decide that you are going to survive this. Know that there are a lot of resources out here, a lot of people struggling through the same things, who are willing to stand with you, in Virtual and in Reality.

All Rights Reserved. © 25th August 2001 by Anitra L. Freeman

 

 

Last updated July 13, 2005