Talking about what’s on our minds can help us recover.
By Donna Jackel
One hour into a support group meeting for adults with bipolar, facilitator Christopher turns to a middle-aged man who has barely spoken.
“How you doin’, Stan?” asks Chris, 38, who has a shaved head and is dressed casually in sweats and a T-shirt.
“Not too well.”
“What’s going on specifically?”
“I just live in the ‘right now.’ I don’t think about the future because for me there is no future. I feel very isolated, alone, no get-up-and-go…I still have it in my head that I’m a worthwhile person, but no one responds to me like that.”
“Does anyone in the group want to respond to that?” Christopher asks.
For the next 20 minutes, the 12 men and women seated in a circle in an office of the Mental Health Association in Rochester, New York, focus their attention on Stan. (All the names in this opening dialogue have been changed, except for Chris, to honor the confidentiality of these support group discussions). From somewhere within his gloom, Stan seems to appreciate their concern.
Joan: “Do you let people know what you need?”
Stan: “I feel it’s just supposed to happen.”
Wanda: “I’ve learned that you have to start patting yourself on the back because no one else will do it for you. I fill a bowl with self-affirmations and read them throughout the day.”
Tom: “Stan, do you have anything you are looking forward to in the next seven days?”
Stan: “Not really.”
Tom: “What about coming here?”
Stan: “I enjoy coming here. People like me. It breaks up my day, but it’s a very transient thing.”
Joan: “After my suicide attempt, I realized that my future is what I make it. Even if you have just one thing to look forward to—it’s not too late to change.”
That morning all was not well with Joan—she had recently lost her job, was having trouble finding another, and her health insurance benefits were about to run out. Yet she was able to temporarily put aside her concerns to reach out to Stan. That’s what members in a successful peer support group do: They listen carefully, demonstrate respect and empathy, and strive to share their own experiences, rather than offer advice.
Generally speaking, a mutual help group is any group of people who meet regularly to share a similar problem, exchange information, and give and receive emotional support, says Matthew J. Chinman, PhD, a behavioral scientist at the RAND Corporation (a nonprofit global policy think-tank) and a clinical psychologist who has studied various forms of peer support. Members typically run the meetings, although some groups are established with the help of mental health professionals.
Experts and consumers agree that support groups can provide guidance, friendship, acceptance, understanding, and a sense of community—all within the framework of a structured, confidential, and safe environment. Participants share their latest ordeals and successes, swap survival tips about the health-care and social services systems, and provide one another with the type of solace that only those who have walked the same path can offer.
Data on the effectiveness of support groups are limited, but studies indicate that people with chronic mental illness do benefit from the process. A review of 12 studies examining the effectiveness of self-help groups, published in August 2008 in the American Journal of Community Psychology, found that positive changes were reported in seven of the groups. In five of the groups, there was no difference in mental health outcomes for those who participated in mutual help groups and those who did not. The authors stressed, however, that “more high-quality outcome research” was needed to determine the effectiveness of mutual support.
It’s a tonic to be able to offer your story… to be doing well enough for someone to want to be in your shoes.
Modeled somewhat after the self-help philosophy of Alcoholics Anonymous, mutual support groups for people with mental illness have gained popularity since the 1970s. A 2002 national survey by the U.S. Department of Health and Human Services found that there were approximately 7,467 mental health support groups, consumer-run mental health services, and self-help organizations, compared to 4,546 traditional mental health organizations. That increase was driven by need, Chinman states. As the rate of deinstitutionalization of mental hospitals increased, it became “clear that the outpatient services were not sufficient,” he says.
“Peer support groups provided an additional mode of services [and] fit with the empowerment focus of the consumer movement, namely that patients with severe mental illness could help themselves,” Chinman says of this phenomenon.
Likewise, consumer-led support groups have gradually gained greater acceptance among mental health professionals, who acknowledge the need for more supportive social net-works to help people readjust to the community following a hospitalization, Chinman points out.
For those still learning to manage their illness, consumer-led support groups offer the chance to connect with others who have bipolar, but who are further along in their recovery and leading full lives. Bruce Saunders of Vancouver, British Columbia, likens the experience to a “light going on.”
“I was newly diagnosed, sitting in the hospital, starting to recover,” he recalls. “Some people from a support group did a visiting program. I was impressed with them—they were just ordinary people, a man and a woman a little younger than I, who had been through everything I had, and come out the other side.” Today, Saunders, now 58, is a group facilitator, helping others. In fact, he has only missed about a dozen support group meetings in 19 years.
“I see other people who are as lost, confused, and discouraged as I was. It’s a tonic to be able to offer your story… to be doing well enough for someone to want to be in your shoes,” says Saunders, a landscape gardener, husband, and father. “I mostly go to support others. It’s nice to be able to talk candidly about my triumphs and ongoing struggles with people who know where I’ve been.”
Finding the right support group can require patience and perseverance. Melissa was profoundly disappointed with her first experience. “I was not coping well with my illness and I was looking for other people with bipolar to talk to,” says Melissa, a pediatric nurse on long-term disability who is married with two young children. She found a group in Vancouver, but its members were men who had unipolar depression. She also found the facilitator to be cool and remote. “Everyone would have a chance to talk and then she would say, ‘Thanks for sharing,’ and turn to the next person,” Melissa says. There was little opportunity for people to interact, she recalls.
After five meetings, Melissa stopped attending these group discussions. “I wasn’t getting any sense that I was understood—that I was a part of something,” she says. “I was hoping for some connections and no connections happened.”
All that changed about a year ago, however, when Melissa and her family moved to Nanaimo, a far smaller city on the eastern coast of southern Vancouver Island. There Melissa found a warm, accepting group—a mix of men and women—several of whom had bipolar. From them, Melissa learned how to keep a mood chart, prepare for a doctor’s appointment, use a light box without triggering a manic episode, find a good pharmacist, and obtain information about medication side effects.
“People feel comfortable—they know they will be accepted even when they start getting hypomanic or manic,” Melissa says. “Watching people go up and down, I think, ‘I’m not the only one.’ It’s very validating—they are just going through this, and then they return to the person they are.”
I’m going to take what’s good [from group] without taking home other people’s troubles. I’m not there to fix them– just to share…
In fact, some individuals are susceptible to having their illness triggered simply by being around a person who is having a manic episode. In these circumstances, some participants will excuse themselves from the meeting. Melissa, for instance, occasionally has trouble sleeping after witnessing someone else’s mania. “When there is someone in the group experiencing hypomania or mania, there is so much energy—it’s like wildfire, and I can catch it really easily,” she says. To protect herself, Melissa sets boundaries. “I’m going to take what’s good [from group] without taking home other people’s troubles. I’m not there to fix them—just to share with them.”
If a participant is severely depressed, it can become difficult to keep the meeting on a positive track, Saunders says. “I encourage people to come back again, and tell them it doesn’t always go like this,” he says. On the plus side, support group participants may be able to detect early warning signs of mania or depression in another participant, thus helping to prevent a full-blown episode.
Saunders stresses that support groups are not just about doom and gloom— they’re also about friendship and laughter. “We have house parties and beach parties,” Saunders says. “You would think it would be awful—a bunch of people with mood disorders getting together,” he jokes. “But we have really good parties—excellent food, a lot of laughter, and telling of stories.”
Some people avoid support groups out of the assumption that only low functioning individuals attend them. But this is not the case, says Ingrid Deetz, director of chapter relations for the Depression and Bipolar Support Alliance (DBSA). “There are a lot of people who would be considered high-functioning —who have jobs, the kind of normal life everyone aspires to … who continue coming when they are better because they want to give back,” Deetz says.
Every support group has its own way of operating, but most begin with a welcome, followed by a review of guidelines that have been previously established by the participants. Each member then checks in and lets the group know how he or she is doing. This is followed by an open discussion in which participants bounce ideas off one another, such as:
“How did you explain that blank spot on your resume when you were on disability?”
“How do you know when to disclose your illness to your boss?”
“At what point in your relationship did you tell your boyfriend that you are bipolar?”
Of course, confidentiality is key to any support group—people need to feel secure that whatever is shared during the meeting remains in the room. Interruptions are discouraged—everyone must wait his or her turn to speak.
There are many organizations, large and small, that run peer support groups for people learning to live with mental illness. In the United States, however, DBSA and the National Alliance on Mental Illness (NAMI) are the largest, with consumer groups nationwide. (DBSA has four chapters in Canada.) Training requirements for peer facilitators vary. DBSA facilitators are not required to undergo training, but the organization does offer a series of online facilitator orientations. And at a monthly call-in, volunteers can get advice and direction from DBSA staffers, most of whom have experienced mental illness themselves. At NAMI, however, training is mandatory for facilitators. Some experts, like Chinman, don’t believe training is necessary to successfully lead a group. “It’s just people sitting around a room helping each other out and being equal,” he says.
So how do you know whether peer support or group therapy would best suit your needs? Try both, suggests Jodi M. Gonzalez, PhD, a clinical psychologist and assistant professor of psychiatry at the University of Texas Health Science Center in San Antonio, who has researched the benefits of group therapy. There are several clear differences between group psychotherapy and peer support, she maintains. Foremost, group psychotherapy is a treatment service provided by a licensed mental health professional, and carries a fee for that service.
Group therapy is also more structured and has an end goal. Moreover, according to Gonzalez, the provider creates a treatment plan for each client in the group. Although socializing is usually discouraged in group therapy out of concern that members might form cliques, members of mutual support groups often do meet outside the group, she adds.
“Peer support is great for learning from other people about how they cope with the illness and to develop social support with people who really understand what your experience is—nothing can compare to that,” Gonzalez says. However, if you have longstanding issues to work out, such as marital problems, the more personalized, treatment-focused nature of group therapy may be preferable, Gonzalez advises. She adds that many people use both types of support.
People show up scared and desperate. They want to know if this is survivable.
If sitting in a room with strangers isn’t your thing, or if you don’t live near a support group, you can find peer support through the Internet. Indeed, people with bipolar are “chatting” with one another all over the world and around the clock. DBSA and NAMI have online support sites, but there are many smaller consumer-created websites as well.
Peer support is also available for caregivers. One cold, December evening in Rochester, a group of about 12 parents came out to attend a DBSA meeting for parents of children who have bipolar disorder. Seated over cups of coffee around a long, oval-shaped table, they shared common concerns and heartache: years of misdiagnosis, difficulty getting their children to take their medication, school troubles, and hospitalizations.
“I wanted to meet other people who know and understand what we are going through,” says one newcomer, who has teenage twins with bipolar.
Alison, a co-facilitator, sought out the support group when her son became suicidal at age 11. He has been stable on medication for two years, but she continues her involvement to help others. When Whalen knows a new family will be at a meeting, she puts together an information packet that includes a list of child psychiatrists and articles about pediatric bipolar.
“People show up scared and desperate. They want to know if this is survivable,” she says. In addition to information, Alison can offer hope: She has been where they are now—police at the house, hospitalizations—and now her son is stable. “You can almost see the relief in their eyes,” when they hear about a happy ending, Whalen says of the new members. “Ninety percent come in crisis—they are coming for support and education.”
Indeed, there is growing evidence that the sharing of life stories can be a very powerful component in recovery from mental illness. “Preliminary data show that peer support groups can be beneficial in improving medication adherence and overall psychological functioning,” Gonzalez says.
In the future, there may also be more paid job opportunities for consumers. Some states are hiring peer specialists. At the forefront is Georgia, which has a certified peer specialist program (CPS). Graduates work with fellow consumers in a variety of capacities, including facilitating support groups. Georgia receives Medicaid reimbursements for peer specialists’ salaries.
For her part, Melissa hopes she will eventually be able to resume her nursing career. Meanwhile, she draws strength from her peers—and gives back to them. One young woman in her group became severely depressed after months of stability. Melissa repeated the same kind words the woman had shared with her during a dark time. “I told her that a wise woman once told me that when you throw the covers off, say, ‘Well done! You have to celebrate the tiny things.’”
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Finding a support group
Below are some of the larger organizations that offer support groups, or links to groups, in the United States and Canada:
National Alliance on Mental Illness (NAMI)
NAMI, a grassroots U.S. organization for people with mental illness and their families, has affiliates in every state and in more than 1,100 communities across the country. NAMI’s mission is to eradicate mental illnesses and improve the quality of life for those affected by mental illnesses. The organization’s activities include a helpline, educational programs, and support groups.
Depression and Bipolar Support Alliance (DBSA)
The DBSA is a patient-directed organization that “works to ensure that people living with mood disorders are treated equitably.” DBSA has a tollfree information and referral line and distributes educational materials about mood disorders free of charge. DBSA has a grassroots network of more than 1,000 consumer-run support groups across the U.S. and over 20 support groups in Canada.
Mental Health America (MHA)
TTY Line: 1-800-433-5959
Mental Health America is a 100-year-old organization dedicated to mental health advocacy and support. The website offers a clearinghouse of information on mental health services, including support groups.
Find the Light Online Support Group
This self-help site links people who have a mood disorder, anxiety, or substance abuse issues. The goal is to provide private online peer support to adults. NAMI and DBSA also have online chatrooms on their websites.
Mood Disorders Society of Canada (MDSC)
The MDSC was formally launched in 2001 with the overall objective to provide people with mood disorders with a strong, cohesive voice at the national level and thus to improve access to treatment, inform research, and shape program development and government policies, improving the quality of life for those affected. A number of provincial chapters provide services and support groups as well.
The Organization for Bipolar Affective Disorder (OBAD)
The organization’s mission is to “help people affected directly or indirectly by bipolar disorder, depression, and anxiety live better lives.” Located in Calgary, Alberta, OBAD offers support groups and other services.
Mood Disorders Association (MDA) of British Columbia
The MDA is a nonprofit organization dedicated to providing support, education, and hope of recovery for those living with a mood disorder or other mental illness. Its website contains a listing of all the support groups in British Columbia.
Canadian Mental Health Association (CMHA)
The CMHA is a nationwide organization that promotes mental health advocacy and supports the resilience and recovery of those experiencing mental illness. It also provides broad information and links to other organizations and support groups across Canada.
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Printed as “Support Groups: Walking the Path to Wellness Together”, Spring 2009
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