National Alliance on Mental Illness
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Playing to win: Creating your wellness team

By Stephanie Stephens

Reprinted with permission from bp Magazine, Fall 2006

Whether you have a fabulous insurance plan, or are coping in a public system, you—the consumer—are the leader of your wellness team. Your team might include a wide range of individuals for body, mind, and spirit.

Conversely, by choice or budget, it might be very small. In any case, you should be the one in charge.

Your head is connected to the rest of you, so you also know that managing your wellness involves more than taking care of just what's between your ears. "There is a disconnect when people are concerned only from the neck up," says Kathryn McNulty, director of consumer education programs for NAMI (National Alliance on Mental Illness). "We live in a body." As with any condition, treating the whole person successfully requires cooperative, insightful management by a wellness team with you as head coach.

Who's on your team?

Having a good health insurance plan, according to McNulty, "doesn't get you a 'team' anything." You or your advocate must coordinate your care with those professionals who are best suited to your individual needs, within your financial parameters.

Maybe your team includes a primary care physician (PCP), a psychiatrist, a psychologist, or psychotherapist … perhaps a nurse or nurse practitioner (NP) … or even a nutritionist, massage therapist, acupuncturist, life counselor, or personal trainer. Members of your family or a good friend may play pivotal roles. Many swear by regular participation in a support group.

"It's a complex challenge under the best of circumstances," confirms McNulty, but you can rise to it, as have some inspiring consumers we'd like you to meet.

Life partner times two

No one said it would be easy. "In our town, I cannot find one person, who is knowledgeable about this ailment, to give my husband the care he needs," laments Vicki Larimer of Rome, Georgia. She fights unwaveringly for the care of her husband of 15 years, who has bipolar and who is frequently unemployed and uninsured, but is eligible for Veterans Administration (VA) assistance. Yes, she has health insurance at work, but adding him to the policy would be financially unmanageable, she says. Her spouse suffers from other medical conditions and needs expensive medications. Larimer has hit many hard bumps in the road to consistency in her husband's treatment.

"Every time we went to the VA, we'd see a different doctor; then we'd spend the entire visit bringing that person up-to-speed; then we couldn't get a diagnosis. Someone else would call back to schedule a test, but when we went to get results, no one could find them." On one occasion, Larimer went to the VA in Decatur, Georgia, to dig for records herself.

Closer to home, this enterprising wife located a nurse practitioner "who is into touch," demonstrating foot massages that Larimer can perform at home with the aid of a reflexology book. The NP also showed her how to incorporate hot and cold water therapy for her spouse's aching joints. Using creativity and determination, she's making sense amid the chaos.

Make peace with your condition

There is confusion around mental illness," observes Kurt Harker. Diagnosed as having bipolar with depression 22 years ago, he now works as director of education at the Mental Health Association in Tippecanoe County, Lafayette, Indiana, one of 340 affiliates of the national association. "People don't know where to go, who to go to, or how to get there," he says. "I have pretty good insurance; I'm one of the lucky ones."

Harker says he has attained a level of peace with his illness, because "I start with myself. The model I use is: mind, body, spirit, and I match each part to the appropriate caregiver or group." Harker's psychiatrist handles the general health aspect; his therapist, the cognitive or mental; and for his spiritual growth, he interfaces with a person or small group within the church. "People who tend to recover," figures Harker, "tend to have that spiritual dimension alive in them."

Talk helps recovery, too. Self-employed marketing professional Paul Sagar, of Toronto, Ontario, who was diagnosed six years ago, attends a monthly, two-hour meeting with his psychiatrist to chat and evaluate medication effectiveness. He also sees his general practitioner (GP) for regular blood work and credits that doctor with diagnosing his bipolar when Sagar shared valuable information about his family history.

In Canada, these medical services are currently covered by each province, but Sagar doesn't rest. For the past five years, he has attended a group meeting in which participants bring relevant articles for discussion. Nutrition is a frequent topic and group members are inspired to "step up to the plate" that consists of a very healthy diet: minimal red meat, lots of fruits and vegetables.

Sagar also stresses the prominent role his wife has played. "She is very cognizant of my behavior changes. If she sees the slightest signal that I'm going off the rails or manic, she'll tell me." He says he empowers his support group to understand how they can help their families, especially as one of his sons was recently diagnosed.

Responsibility to yourself

Honor your responsibility to yourself, says Alan Zais of Rockford, Illinois, who has tirelessly assembled his own small but mighty medical team. Zais finds his colleagues on the Depression and Bipolar Support Alliance (DBSA) board of directors to be quietly supportive. "I don't advertise it, I don't hide it," he says.

He's focused, however: "With so many vagaries, I believe you have to manage yourself, which is easier said than done." Zais has been diagnosed as having bipolar since he was young, and admits to a "very difficult, very horrific ride," beginning with hallucinations that finally drove him as a teenager to reluctantly talk to his GP.

After being incorrectly medicated with antidepressants, Zais says that he was sent to a psychiatrist, who was "kind and sensitive," and who, at last, correctly diagnosed and treated him. His other key player is a neuro-ophthalmologist to manage loss of eyelid muscle control caused by medication. He credits both professionals with markedly improving his productivity, saying "I'd be homeless if it weren't for them."

Negotiating the medical maze

Zais has a big job, often stressful, in overseeing an extensive budget in public housing with a large population of residents with bipolar "who don't have the network I do, or the support that is consistent and complete." He makes himself available for questions and he understands how easy it is for them to stay at home, to become nonproductive members of society, to stop trying when they end up with subsidized health care. As segregated" individuals, many are viewed "as not having the intelligence or employment capabilities, and they think 'well, maybe that is me,' and it's a self-fulfilling mindset."

Don't give in, he advises: "I have health-care [coverage] since I work for the government, but I still had to battle insurance [providers]." Medical coverage is not the end-all, says Zais, who worries that many insurance companies and health organizations "don't get it, and it's tragic."

Support? Consider "antisupport," he suggests, recalling when his former preferred provider organization (PPO) dropped all its psychiatrists, including one he "would have flown across the country to see." He was forced to use contracted doctors, and reckons his insurance carrier "wouldn't have done that to my PCP. The relationship [with a psychiatrist] takes years to build and five seconds to destroy. It's not the same as a dentist."

What public services can provide

Experts generally agree that the community level of medical and psychiatric services are certainly better than nothing, and frequently offer high quality. "It gets very complicated for people. They can be overwhelmed if they don't have someone to advocate for them and help them maneuver through the system," says Mary Ann Bozenski, LMSW, ACSW, prevention, education, and outreach coordinator at Gateway Community Health (GCH) in Detroit, Michigan, a managed comprehensive provider network.

At GCH, member patients are referred to providers within the network; they then are evaluated as to the scope of necessary services and the case manager, who makes recommendations and connects them to those services, is assigned. The patient might see a psychiatrist or might get assigned to the assertive community treatment (ACT) program. Her advice to the uninsured or those on Medicaid: "Go to your community mental health agency first." In the U.S., services available to consumers vary from state to state.

Bozenski, a social worker, who herself has bipolar with private-pay insurance, entered the system through her hospital emergency room. She subsequently consulted three psychiatrists before obtaining an accurate diagnosis, and now sees a social worker, a GP, and a nutritionist, as well as attending and directing support groups.

Keeping their patients 'whole'

How do medical professionals implement the team approach in this age of managed care, "rush-rush" appointments, and complex billing? William Carter, MD, assistant professor of psychiatry at Harvard Medical School and director of the Clinical Trials Center at McLean Hospital in Belmont, Massachusetts, is committed to "making sure I'm keeping a person 'a person,' not making them a patient as their profession." He sees "a lot of shades of gray in between" the two tiers of insured and the uninsured. At a minimum, he says, a patient needs a pharmacologist or prescriber, who could be the psychiatrist, family practitioner, or primary care physician.

In some areas of the country, "there may be only one doctor available," says Dr. Carter. Additionally, a patient requires someone in the therapist/counseling/ formal support domain. If a patient has other medical conditions, such as attention deficit disorder (ADD) or paraplegia, notes this doctor, "the rest of the team can vary widely."

Medication and counseling/therapy/ psychoeducation go hand-in-hand, agrees Greg Simon, MD, MPH, of the Center for Health Studies, Group Health Cooperative in Seattle, Washington: "At a minimum, that's what the care team should include. That means seeing two different providers, and hopefully, they're in regular communication."

"Hopefully"---for there is no utopia. Even those who have the best health-care insurance may have care that's not well coordinated or integrated. With bipolar, "treatment can be pretty intermittent,"says Dr. Simon. Our general medicalsystem is not good about trackingpeople down when that happens. It's the same with heart disease or diabetes."

In our imaginary ideal world, the family as part of the team would be supportive, keeping the patient on track, seeing they follow through with sleep, weight control, and exercise, Dr. Simon says. "But sometimes family members don't come across the right way. If the patient is upset or gets angry, they might say instead: 'You must be manic: have you taken your pills lately?'"

A 2003 story in Psychology Today noted that "experts agree that … the course of the disorder depends not merely on correct diagnosis and medication, but on extensive education and psychotherapy involving the whole family."

Empowerment through knowledge

Education of the patient is empowering and is emphasized at the Department of Psychiatry, University of British Columbia in Vancouver, according to Lakshmi N. Yatham, MBBC, FRCPC, the more you know the better chance you have," he avows. His colleagues take a team approach and consider bipolar as "a chronic, lifetime medical condition, plus we know people with bipolar are much more likely to have other medical problems and side effects, such as weight gain, diabetes, or changes in cholesterol."

His university hospital encourages Canadian patients' access to social workers, psychologists, physiotherapists, and occupational therapists, to name a few. If you live in a metropolitan area where university hospitals are located, you're one up on a rural resident. But, says Dr. Yatham, a patient from a remote area can come for an assessment, inpatient or outpatient, and receive a comprehensive work-up with results and treatment recommendations to take home to the local doctor, who ideally "might be a family physician with some psychiatric training."

Wherever you live and whatever the scope of your coverage capability, it's critical that you take time to plot your wellness route with a focus that's "all about you." As the person who inhabits your body 24/7, resolve to research and identify your team, and commit to the game plan. You can be victorious, aware that every day you "practice" puts you one step closer to winning the game.

Stephanie Stephens is an award-winning journalist, specializing in health, who lives in California and New Zealand.

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