Just as we’d begun to assimilate the news about the genetics of breast cancer and Jewish women, we discover that we have to pay attention to bipolar illness— how it affects Ashkenazi Jews, and why women are at risk.
Lisa Soloway,* a beloved child in a middle-class Jewish family, was popular, an accomplished student and a talented artist. She was in college when she was hospitalized for the first time. She recalls that she had been doing drugs and hadn’t slept for several days. She felt “weird.” She began running around the street at 4 a.m., shouting, giving away dollar bills.
From that point, throughout her adult life, she was hospitalized often—the diagnosis, bipolar disorder, more popularly known as manic depression. But despite somes times lengthy hospitalizations and a divorce, she finished college and a graduate program and raised two children She held down a number of highly responsible professional jobs, and in between manic and depressive episodes, she’d “pull together completely,” says a friend.
In a strange way, Lisa was lucky. Her symptoms of mania and depression were so obvious that she received immediate treatment. She spent years on a combination of different medications, often administered against her will. She had jobs where her illness was accepted as being of biological origin and a disability like any other, and where she had medical insurance that included good mental health coverage. She had a supportive family and steadfast friends who saw her through legal troubles and hospitalizations. Many people are not so “lucky.”
A 46-year-old man from another middle-class Jewish family, whose bipolar disorder was not diagnosed until he was 44, has also been married and divorced twice; despite two masters’ degrees, Al Silber* has been unable to hold a job. “I don’t know what to do,” he wrote to his older sister. “I had a home, a life, a family, work. Respect, possibilities, future, income. Now what? I don’t know where to go. I am so alone in this world. So afraid of being on the street, so desperate just to get the demons out of my head.”
His sister did not know what to say or do to help, she recounts. As long as she could remember, her brother had gone from crisis to crisis. Kind, generous and insightful most of the time, he was also capable of violent rages. Several times, he attacked her physically. Their widowed mother refused to have Al in her house. The psychiatrist who finally labelled his problem as manic depression told him, “You’ve been going through episodes of this stuff since you were a child. You suffered for 35 years needlessly. That’s the tragedy of it—this illness wreaked havoc on everything that happened to you.”
By the time he was diagnosed, Al’s three children were alienated from him, and his oldest—who’d had an abortion at 14, attempted suicide at 15, and at 19 had dropped out of college—was also showing clear signs of suffering from the disorder, which has a strong hereditary component and, according to some studies, a greater likelihood of being expressed in Ashkenazi Jewish families.
A mood disorder, manic depression affects more than 2.5 million Americans, about half of them women, and it subsumes a wide spectrum of behaviors. Sometimes, people with manic depression are psychotic, meaning that they are out of touch with reality. Often, however, they may function adequately—even brilliantly. The defining characteristic of the disorder is that people who have it cycle between depression and mania or between either depression or mania and periods of normality.
Roughly 1 percent of the population has some form of bipolar disorder, but if one parent has the disorder, there is a 25 percent to 30 percent likelihood that his or her children will have it, too, and if both parents have major depression or manic depression, the risk of their children developing one of these mood disorders or schizophrenia is 50 percent to 75 percent.
This year, Johns Hopkins University launches a major project to study Ashkenazi families, advertising for research subjects in Anglo-Jewish newspapers across the country. Two medical authorities on manic depression, Drs. Frederick K. Goodwin and Kay Redfield Jamison, quote studies that find “manic-depressive illness rates are higher in Ashkenazic Jews (born in Europe or the Americas) than Gentiles, with no differences between Sephardic Jews (born in Asia or Africa) and Gentiles.” Citing research conducted fom the early 1960s to the 1980s, they note a 1975 finding that 45 percent of the patients with affective disorders in Jerusalem had bipolar illness, compared to only 19 percent in Sweden.
While Goodwin and Jamison hasten to point out that these and other epidemiological studies are not conclusive, what researchers are finding without a doubt is that many Jews with a familial history of bipolar disorder or schizophrenia are not likely to acknowledge it—surprising because the stereotype of the 20th-century urban Jew is of someone with great faith in psychiatry. But bipolar illness is biological in origin, unlike the neurotic ailments that are considered to be learned behavior and hence can be unlearned in therapy; manic-depression cannot be altered simply by the “talking cure” that Woody Allen movies suggest is the birthright of every “nice neurotic” Jew.
Dr. Ann Pulver, a geneticist who is conducting the Johns Hopkins study, commented that she is “very saddened” by the Jewish response to her bipolar study. “The stigma associated with mental illness in the Jewish population is so much more pronounced than in the general population,” she says. “I’ve been finding difficulty in getting families to participate at a much higher rate than I would have expected.”
The High Cost of Keeping It Quiet
The rabbis are in denial,” says Pulver. ‘I’ve gone to Orthodox rabbis— where the community is more inbred than the general Jewish population and where they have large families, so that genetic studies are very important—but it’s a real shanda [shame] to have someone ill in your family. They don’t even tell their brothers and sisters. I know of a situation where there were two sisters, each with a schizophrenic child, and the women didn’t know they had schizophrenic nieces and nephews.”
According to Pulver, the reason why Orthodox families are often so diligent about hiding this mental illness is that it affects the marriagability of the afflicted person’s siblings and cousins. “It would have to be reported [to the potential spouse],” she says. “And that’s why, when I went to the Orthodox rabbis, they told me there was no mental illness in their congregations—they send ill people out of the community. I’ve run into a couple of families in Baltimore that have sent their sick children to Israel, and I’ve met families in Israel that have sent their children to the States. Anywhere but home.”
Pulver says she believes that both Orthodox and more liberal Jews stigmatize mental illness more than non- Jews because of the high value placed on intellect and achievement.
Some may be in denial about their own manic-depression because one form of the illness, hypomania draws out characteristics that are highly valued in the Jewish community and in society in general. Hypomania, in which people have a great deal of energy and may be very productive, “can have a socially beneficial outcome,” explains David Chowes, a board member of the National Depressive and Manic Depressive Association and an instructor in psychology at Baruch College in New York City. “There are probably people you know who are always working. They leave home at six in the morning and they get to the office before anyone else. They earn a tremendous amount of money and they’re always doing things and they go very far in corporations or in law practices. The price, of course, is that hypomanics can become manic and often also have depressive episodes.”
How Women Differ
Not only are there special issues for Jews when it comes to manic depression, there are particular issues for women as well. Bipolar women are more likely than men to develop a rapid-cycling form of the illness, and may be at higher risk than men for depressive episodes and for episodes of mixed (as opposed to pure) mania. These gender differences have not been thoroughly researched, although clinicians know that manic-depressive women behave differently than manic-depressive men and also are more likely to have extra concerns over childbearing.
First, men are likelier than women to suffer from the most extreme manic symptoms—^hallucinations, paranoia and other delusions—and some experts speculate that manic-depressive men are more likely than women to get treatment early in their illness. Second, while most doctors are clear that manic depression should not stop a woman from becoming pregnant, issues of treatment do arise: How will medication interact with the developing fetus? If a woman goes off her medication during her pregnancy, will she be able to maintain emotional balance?
“I had to go off lithium to get pregnant,” says one 33- year-old woman who is expecting her first baby this year. One of seven children, three of whom have been diagnosed with manic depression, she said that she had “put a lot of serious thought” into whether it was safe to get pregnant. Working closely with her doctor, she went back on lithium in her third trimester as her signs of manic depression began to reappear. She is particularly worried about the possibility of postpartum depression, and with good reason.
“From both the clinical and research perspectives,” writes Dr. Ellen Leibenluft, who has studied women and bipolar illness, “it is worth noting that there is no time in the life of a bipolar patient when the risk of an episode is higher than it is for a female bipolar patient in the postpartum period,” especially if she has had a previous episode of post-partum
These considerations, plus apprehension about transmitting manic depression to another generation, may cause some bipolar women to avoid pregnancy. However, Ann Pulver believes that the genetic odds should not prevent a bipolar woman from having children.
“We know that these diseases incur risks to the offspring of the people who have them,” she says, “and the risk is greater than that of the general population. But given the fact that we are all unique genetic human beings, we’re all at risk for different things. We all have susceptibility genes. It’s a very personal choice whether or not you want to have a child. Let’s say you’re walking around with coronary heart disease genes. This is just another in a long list.”
“They’re Hell to Live With”
Untreated, the repercussions of manic depression can be severe. Drs. Goodwin and Jamison state in their ‘ book Manic-Depressive Illness that one study found that “the long-term burdens of the illness included financial difficulties, home and child neglect, marital problems, loss of status and prestige, constant tension, and fears of recurrence of acute illness.” The disruptions were so severe that, when asked whether, if they could do it over, they would have married and had children with their manic-depressive partners, about half said “no.”
“When someone is manic, they’re hell to live with,” observes Dr Kathy Jungreis, a Boston therapist. “They’re all over the place. They’re irritable. Their rage gets closer and closer to the surface. People close to them are constantly anxious about what they’re going to do next.”
Meg Levine,* the daughter of a manic-depressive mother who “was never normal,” conveys what it was like from the child’s perspective. “We were never physically abused,” she says. “It was all emotional abuse. She threw my sister out of the house when she was a teenager. She falsely accused my brother of being on drugs, and she stole money from us and accused him. That’s the worst thing that she’s ever done. She drove divisions between us. I’m still really on talking terms with only one of my siblings.”
Now Levine is herself a mother with a six-year-old son. “My mother identified with me pathologically when I was a child, so whenever I feel depressed, I have this unbelievable fear that I’ll be crazy like my mother,” she says. “Now that I’m a mother myself, my childhood has come back with a vengeance. I’m reliving many of the things that happened as I’m raising my child.”
A Flaw in Biology, Not Character
The good news is that with the current arma-mentarium, most cases of manic depression can be treated. The difficulty is in getting people to acknowledge that they have the disorder and go for treatment. But the problem doesn’t stop with initial treatment; people often stop taking their medication as they begin to feel better, and in the manic stage some people, unaware of the state they’re in, declare that they have no need for the medication.
And then there is the stigma and the continuing misunderstanding of this disorder. Consider the case of Sol Wachtler, former Chief Judge of the New York State Court of Appeals, who was imprisoned for harassing and threatening his former lover, Joy Silverman. Wachtler, who was diagnosed as manic depressive, wrote a book about his experiences called After the Madness. Reviewing the book in The New York Times, Richard Bernstein wrote, “The former judge, who was New York’s highest judicial official, attributes his behavior, as his tide suggests, to ‘madness,’ a depression for which he took drugs that intensified his manic-depressive state. He alternated between deep despair and delusions of omnipotence. . . .Reading this, one wishes for greater consideration by Mr. Wachtler of the possibility that a character flaw was at work more than the sleeping pill Halcion or the anti-depressant Pamelor. Was he so used to getting what he wanted in his life that Ms. Silverman’s rejection of him was intolerable? Was this more a case of hubris than of drug addiction?”
Bernstein’s comments ignore the effects of antidepressant medication on someone who is bipolar. As psychopharmacologists know, anti-depressant drugs can sometimes precipitate mania in someone who is bipolar; this is actually one of the incontrovertible ways of diagnosing the illness. Wachtler’s behavior truly may have been beyond his control.
Says Chowes, “As you have treatments that begin to work, the illness is less stigmatized. There are people who are so disabled by the illness that it’s appropriate to restrict their options, but if a person is controlled, there’s no reason why he or she can’t go back to work or to responsible situations.”
Manic depression is a complex disorder with many ramifications, organic in origin, and treatable. Until this is more widely understood, it will remain for Jews, as for many others, a secret affliction, often with bitter consequences.
Terese Loeb Kreuzer is a New York-based journalist, photographer, designer and video producer. Her articles have appeared in The New York Times, The Boston Herald, Newsday, Country Living and LILITH.
For More Information on Manic Depression
- For genetic research, Johns Hopkins University School of Medicine is seeking Ashkenazi families in which two siblings suffer from manic depression or schizophrenia and at least one parent is alive. Dr. Ann Pulver (888-289-4095)
- The National Depressive and Manic-Depressive Association offers information about bipolar disorder and support groups, plus a catalog with books and articles about manic depression and depression. 800-82-NDMDA or www.ndmda.org.
- Manic-Depressive Illness by Frederick K. Goodwin, M.D. and Kay Redfield Jamison, PhD. (1000pp., Oxford University Press, 1990)
- An Unquiet Mind: A Memoir of Moods and Madness by Kay Redfield Jamison, PhD., about her own manic depression (224pp., paper, Knopf, 1995)
- The Depression Workbook: A Guide for Living with Depression and Manic Depression by Mary Ellen Copeland, MS (302pp., paper, Newharbinger Publications, 1992)