By Michelle Roberts
http://www.bphope.com/Item.aspx/104/partners-for-life
Daniel, a computer software engineer in Portland, Oregon, was used to solving complicated problems.
But when his wife, Julie, was diagnosed with bipolar disorder in 2001, he didn’t know what to do. Her moods could be described in two ways: So irate she would scream obscenities at him, or so depressed she could barely get out of bed. “It was pretty hard,” he recalls. “Of all the problems I thought we’d encounter during our marriage, mental illness wasn’t something I’d ever considered.”
The erratic behavior of a person in the throes of mania or depression can shake the foundation of a marriage. The diagnosis of a lifelong, life-threatening illness can scare a spouse away. Of course, no marriage or long-term partnership is easy. In the United States and Canada, at least 40 percent of all marriages fail. But the statistics for marriages involving a person who has bipolar disorder are especially sobering—an estimated 90 percent of these end in divorce, according to a November 2003 article, “Managing Bipolar Disorder,” in
Psychology Today.
Despite these odds,
bp Magazine has located and spoken with several long-term couples facing bipolar issues who nonetheless are making it work. They all admit that their partnerships have been rocky at times, but that with counseling, love, and acceptance of the illness, they have not only stayed together, but have also grown stronger as a couple.
For example, Daniel—amid the cacophony and confusion of Julie’s ever-changing moods—made a decision that would save his now 24-year marriage. Instead of seeing his relationship with Julie as “something I would have to write off and cut my losses,” he decided to view his continued support of her as “an investment in something worthwhile.”
When the symptoms of mental illness first begin to surface, most spouses don’t know what to think. They’re confused and feel like they’re drowning in chaos. “I was afraid I’d never [again] see the man I’d fallen in love with,” says Laurie, of San Antonio, Texas, whose husband, Michael (nicknamed Doug), was hospitalized with his first bipolar episode in 1998.
When sympathy’s not enoughFollowing a diagnosis, the first and most dominant response from a spouse usually is sympathy, says David A. Karp, professor of sociology at Boston College and author of
The Burden of Sympathy: How Families Cope with Mental Illness(Oxford University Press, 2002). “But further down the road, a spouse may experience emotions they don’t think they should be having—anger, frustration, and even hate.”
Indeed, caring for someone who has a mental illness can be more draining than caring for someone with cancer, says Dr. Karp. When a spouse does something for a mate with a physical illness, they are usually met with gratitude. People who have bipolar disorder, on the other hand, often deny the diagnosis, are unwilling to comply with medication, and—worst of all—treat one’s spouse like the enemy.
Laurie recalls the pain she felt when her husband, convinced he could control the “thunder” with his thoughts, screamed angrily at her for having him hospitalized. “For a few days,” she says, “he wouldn’t even see me.”
If a spouse can move through these times, he or she will reach a place of acceptance, Dr. Karp maintains. Those difficult emotions will then be replaced with softer feelings like love and compassion. Of course, this kind of transformation requires redefining spousal expectations and also redrawing the picture of what they had once thought life would look like.
For some couples, that may mean having to rely on only one income, going without annual vacations, or choosing not to start a family. For others, it may mean that many of the responsibilities of daily life fall on the well partner.
Exhausted with the demands of raising children and caring for her husband, Laurie says she yearned for the day when “someone would take care of me instead of the other way around.” She has had to accept that it’s okay if her life looks different than she once imagined. “You just need to accept that it is a loss,” she says. “That doesn’t mean you can’t still have a good life, just maybe not the one you’d envisioned.”
Sharing responsibilityCouples who seem to have the most success share the belief that the partner with bipolar disorder has an equal responsibility in the relationship with the well spouse. Most people embrace the idea that bipolar disorder is biological. If so, partners wonder: “Does my mate have any control over his or her personal behavior? Do they shoulder some responsibility to help themselves?”
The answer is “yes” on both counts, according to Dr. Karp. Although extremely manic or depressed individuals may be temporarily unable to help themselves, it’s important that they remain self-sufficient during periods of wellness. In cases where one partner has bipolar and the marriage ends, it’s usually because the healthy spouse feels he or she has done everything they can to help the other person become well. They have given unconditional love, scheduled counseling appointments, and monitored medications, but nothing has made the situation any better.
“As much as it’s a biomedical condition, people with mental illnesses can’t be let completely off the hook,” says Dr. Karp, who himself has major depression. “Of course, we can’t expect them to pull themselves up by their bootstraps when they’re acutely ill, but during periods of wellness they owe it to their spouses to do whatever is in their power to help themselves.”
This can be as simple as taking medications, working out regularly, or eating healthy. Without such actions, spouses can feel burned out if there’s “no reciprocation of their efforts,” Dr. Karp says.
Julie says it’s easy for her to become “very selfish” when she’s either manic or depressed. At one point, Daniel sat her down and told her, “I need you to pay attention to what’s going on here.” “It was a real wake-up call,” she says. “It hurt at first to know I was hurting him, but it made me realize that I had a responsibility to him and our marriage, not just to myself.”
Mark, who lives in Ontario and has bipolar, says he sometimes worries about the burden his illness places on Jody, his wife of one year. Taking care of himself, he says, is like investing in his marriage.
“I don’t drink, smoke, or take drugs,” says Mark, who admits he has struggled with all those things in the past. “I exercise regularly, eat right, and study hard,” he says. “I’m doing these things not only for myself, but also for Jody. I don’t want her to ever feel like I’m not working as hard as I can to stay well.”
Thinking aheadRather than fearing the future, successful couples say they have used periods of wellness to prepare for episodes that may lie ahead. In the grip of mania, a person who has bipolar can easily wipe out joint checking and savings accounts. Without a second thought, they may leave the family with no money for groceries, let alone a mortgage payment.
Our couples suggest opening up accounts in the well spouse’s name for all expenses. Some couples also agree to give power of attorney or extend other means of limited control to the well spouse—this for occasions when the spouse with bipolar is ill.
It’s also helpful to write down in advance a list of symptoms the spouse with bipolar exhibits when on the cusp of a manic or depressive episode. This way, both spouses can agree at what point to seek help for the spouse who has bipolar. With this approach, emotions are taken out of the equation, if and when the spouse with bipolar refuses help later on.
Partners become very good at identifying their mate’s symptoms. Often they can help the spouse seek help before the mania or depression spirals out of control. It’s also helpful if a couple designs a “road map for what to do,” according to Dr. Karp, when those symptoms appear. “It helps diffuse any anger or guilt that may come up when difficult decisions, such as hospitalization, are made,” Dr. Karp says. “It’s a plan that empowers both people in the relationship.”
Burdens and boundaries Many spouses struggle with how to honor their commitment to help the person they love, without becoming engulfed in the spouse’s misery or mania. When a person is acutely ill, it may become necessary for the well spouse to take the other to physician appointments, make certain the person is taking his or her medication, even watch over the individual for safety. All this is in addition to taking over all the other household duties, such as paying bills or caring for children.
Often, caregivers’ relationships with other family members begin to suffer. They may begin to feel like their own identities are being buried—they are losing themselves or jeopardizing their own health.
“I do feel both afraid and burdened from time to time,” Laurie says. “In the midst of everyday deadlines and my personal issues, I have had to stop and deal with [my husband] going through mania or depression. It’s very hard.”
Spouses must learn to draw a boundary line, or risk losing themselves, Dr. Karp says. But it likely won’t be a permanent marked boundary. Wherever they draw the line, “the unpredictable winds of mental illness come in and blow it away,” Dr. Karp explains. As a result, “people have to keep redrawing the boundaries.”
Furthermore, Dr. Karp argues that sometimes people have to do the emotionally counterintuitive thing and withdraw. It may sound harsh, but it’s healthy. Spouses, he says, must learn to take care of themselves before they can take care of others.
Laurie has learned to put herself through school, something her husband, Doug, wasn’t always able to support. Manic and angry, Doug announced he wouldn’t attend her college graduation.
“I was determined not to let anything or anyone ruin that day—it was mine and I didn’t deserve to have it taken away just because my husband has an illness,” she says. “He ended up going after all, and I love him for that.”
Now, she is working toward a master’s degree.
“It’s important that I feel like my life can continue to move forward, even when my husband is struggling.”
Laurie and DougIt rained the day Doug and Laurie were married 25 years ago. Doug’s mother said it was a sign of good luck. It rained again the day their first child was born, convincing the couple that the superstition was true.
But it also rained the day eight years ago when psychiatrists wrapped Doug in a straight jacket and told Laurie she needed to commit him to a psychiatric hospital. Laurie, shaken and unsure of everything she thought she knew about her life and marriage, recalls, “I’ll never forget watching them drive away with Doug. He was screaming and strapped to the gurney. I felt like I’d stepped into a different world.”
Laurie and Doug, of San Antonio, Texas, had been married for 18 years and had four children, ages 10, 12, 13, and 16, when Doug had his first psychotic episode in 1998. Doug, a manager at a municipal water and sanitation plant for nearly two decades, had always been a loving, stable provider. It was terrifying, Laurie remembers, to see him so out-of-control, speaking incoherently, and insisting he was God.
“I felt like I had just been led into a very dark place and, quite honestly, I didn’t think he or I would ever find our way out,” says Laurie, a teacher. When Doug’s psychiatrist told Laurie that Doug had been diagnosed as having bipolar disorder, she remembers asking, “‘What is that?’ I didn’t have a clue—had never heard of it before in my life,” she says. “I went home, got on the Internet and cried as I read about it. I thought it was something he would never recover from.”
Doug was in the hospital for nearly two weeks. After being stabilized on medication and seeing glimpses of Doug’s old personality, Laurie says she began to feel hope. Still, she found she was left with most of the responsibilities of their life together—from caring for the children to paying the bills. Even though she loved Doug, she still felt burdened.
“I had to seek counseling for myself after my husband’s second hospitalization because I felt cheated somehow,” she says. “I felt overburdened with having to make certain decisions on my own and feeling that I had to act a certain way.”
For a long time, it was difficult for Laurie and Doug to talk about anything except Doug’s illness. But as time passed, both learned to step back and enjoy the periods in which Doug is stable. Laurie says she has attended bipolar support groups with him, but not on a regular basis. “I don’t want him to feel like I’m constantly watching over him…that he [can] build his own networking system.”
At the same time, Doug says he feels reassured by Laurie’s presence in his life. “I don’t expect Laurie to hold my hand, but at certain times my mind is not completely there and it’s great to know that she stands by my side in the event I need her.”
Last summer, Doug was hospitalized a third time. Laurie says she seriously considered leaving him. Not because he was ill, but because she didn’t believe he was doing all that was in his own power to get better. “I thought, if he’s not going to make that extra effort to help himself, then I don’t have to stay,” she says. “I love him, but I just didn’t feel that that was my responsibility anymore. I’m giving myself that choice.”
Doug says his wife’s resolve to take care of herself made him want to get better. “It made me see that she’s not just sticking around because she feels sorry for me,” he says. “She can step away from it.”
Since his release three and a half months ago, Doug has never done better. Both he and Laurie have quit smoking cigarettes and drinking alcohol. They also began counseling for couples and joined a gym, where they work out at least three times a week.
Laurie says she feels more confident about her marriage than she has in years. Still, she knows that despite their many years together, she and Doug still take it day by day.
“His caseworker asked me during his last hospitalization if I was ever afraid,” she says. “I’d be a liar if I said no. I’m always afraid that another episode is possible. Mostly, though, I’m afraid of what I would do without him.”
Jody and MarkMark was afraid to tell his new girlfriend that he suffers from bipolar disorder.
But just two weeks after he started dating Jody, the woman who would become his wife, he mustered his courage and “just went for it.”
“I was nervous and pretty much afraid that that might be it,” says Mark, 37, who recently got a job as an addiction counselor for the Social Rehabilitation Program of the Canadian Mental Health Association. “Based on past experience, I would meet somebody and start liking them, spend some time with them,” he says. “Then they’d find out I have bipolar and they’d split.”
But Jody, 46, didn’t flinch. “I’m pretty open-minded,” she says, adding that she’d already looked past Mark’s earring, tattoos, and wild way of dressing. “I decided not to judge a book by its cover.”
During the three years they’ve been together, Mark has showed only mild symptoms of mania or depression. He attributes this to the fact that his and Jody’s primary focus as a couple is their mutual and personal wellness.
The couple, who live in Ontario, exercise daily at the gym and eat only natural foods. They also get plenty of sleep and have cut out all alcohol and cigarettes. Mark’s illness has become a secondary issue to the benefits they both get from living a healthy lifestyle.
“We just focus on that—wellness,” Jody says. “Wellness of mind, body, and spirit.”
That doesn’t mean it’s always easy. There are times when Mark suffers from anxiety, as when he was interviewing for his current job. Mark says he felt comfortable talking to Jody about it, but then she “gave me my space when I needed it and rest when I needed it.
“I believe Jody made a point not to argue with me, as she felt that would be pointless when I was hypomanic,” he recalls. “In other words, she backed down. She may have lost the battle, but in the end [she] won the war because the situation wasn’t escalated out of control.”
Mark says that part of his commitment to Jody entails doing everything he can to stay well. “From my end, I slept when I needed and disciplined myself to get up when I felt I should,” he says. “I also saw my doctor and had him tweak my medication to suit my needs at the time.”
The couple recently celebrated their first wedding anniversary.
“It does occur to me that I could get ill—manic, depressed, or hypo-manic for an extended period of time—[and] that could cause problems in my marriage,” Mark says. “However, I have a good understanding of my condition and take excellent care of myself today, perhaps better than some who do not have bipolar.”
Mark attributes his wellness in recent years to the love that he and Jody share. “I would have a much more difficult time without her,” he says. “She gives me a reason to work my hardest and to overcome this illness.”
Julie and DanielDaniel, 49, admits he’s never been one of those touchy-feely kind of guys. When it comes to expressing his feelings, he’d usually rather not.
But a few years ago, that changed.
Daniel’s wife, Julie, 47, who has bipolar disorder, was lost in a depressive state. And Daniel, after months of frustration and fear, finally decided to speak his truth.
“I had to tell her, ‘I’ve been cutting you a lot of slack lately, but I’m suffering in this relationship,’” Daniel recalls telling Julie. “I’ve kept this inside for a long time, but I’m dying on the vine here.”
The Portland, Oregon, couple have faced many challenges since Julie began showing symptoms of bipolar disorder more than a decade ago. She was diagnosed in 2001 after several years of unsuccessful treatment for anxiety and depression. But even with proper treatment, Julie still struggles—often finding herself stuck in either a hypomanic state—chatty, hyper, and angry—or a depression that zaps her energy and makes it difficult for her to get out of bed.
“The first couple of times Daniel told me my illness was hurting him, it would make me feel really guilty,” Julie says, “like I was a bad person, a complete screw-up. But as I gained more insight into the disorder—therapy, talking about it, and living right—I was able to take it in better.”
Julie attributes the continued success of her and Daniel’s 24-year marriage to her husband’s newfound voice. “It’s important that the person who doesn’t have the illness feels that they can express their feelings, too,” Julie says. “Mental illness can make you very selfish without [your] even realizing it.”
One of the most important things the Williamses have learned is to recognize the symptoms of Julie’s illness and respond to them clinically, rather than emotionally. For example, Daniel tries not to internalize the hurtful things Julie often says while in a hypomanic state. Julie, on the other hand, tries to forgive herself when she does. “When I become really, really, really vicious, he gets his feelings hurt,” she says. “Then he expresses that to me. Then I feel just like the worst person on the planet.”
The truth of her husband’s heart shines through when “he’s the one who’s hurt, but he turns and comforts me, because Daniel knows I hate myself when I hurt someone’s feelings.”
Daniel says his and Julie’s communication skills are still evolving. “I don’t want it to sound like I’m some kind of saint or something,” he says. “The first few times I told her how I was feeling were not pretty. I wasn’t a happy camper. But I soon realized that getting all angry and worked up was not going to solve the situation. It’s just going to make Julie suck it up and act like it’s better, when it’s not. I didn’t want that, either.”Julie says she still has to work at not instantly turning to guilt and self-loathing when Daniel expresses his needs. “Now, Daniel can say something to me and I listen,” she says. “I’m not saying I won’t feel bad, but I don’t have a complete breakdown. I tell myself, ‘It’s not your fault. You’re not doing this because you’re a bad person. Daniel is just saying that to you because he’s a real person with real needs, too.’ I talk myself through it and I’m okay.”
Rather than focus on the illness and what separates them, the Williamses say they have learned to focus on what they share—their three cats, their love of the Oregon Symphony, long walks in the woods behind their home.
“The real bottom line is you have to decide that you want this relationship to work,” Daniel says. “You start looking for ways to make it work.”
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Michelle Roberts is a freelance writer based in Portland, Oregon. A recipient of a 2004–05 Rosalynn Carter Fellowship for Mental Health Journalism, she specializes in mental health and family issues.
