A study in the March 2005 Australian and New Zealand Journal of Psychiatry (abstract here) by Sarah Russell PhD of the Melbourne-based Research Matters of Psychiatry is so unusual that it merits a full article to itself.
Dr Russell recruited 100 bipolar patients who had stayed well for the past two years or longer. Staying well to some patients meant being symptom-free and behaving normally. For others, it meant a sense of control over their illness. The sample included 63 women and 37 men. Ages ranged from 18 to 83 years, with most over age 30. Seventy-six percent of the participants were in paid employment, 38 percent were parents.
Dr Russell asked these patients what they did to stay well. (In more than nine years of researching and writing about my illness, this is the only study I have come across that solicited the wisdom and experience of patients.)
The patients informed Dr Russell that they were extremely mindful of their diagnosis and “how they were responding to their mental, emotional, social, and physical environment.” Rather than simply taking their meds and forgetting about their illness (an impression created by their doctors), patients would “move swiftly to intercept a mood swing.” Moving swiftly often meant a decent night’s sleep and other strategic stop and smell the roses moments.
The study patients were adept at identifying their mood triggers, which needed to be picked up much earlier, they reported, than what their doctors recommended. By the time the sex, productivity, and spending of hypomania started to roll around, they said, it was already way too late. Instead, they were microscopically attuned to subtle changes in sleep, mood, thoughts, and energy levels.
Most participants were fanatic about maintaining their sleep. When disruptions to their routines did happen, they did not hesitate to take a sleep medication. In addition, participants did what they could to minimize stress in their lives. Smart lifestyle choices (diet, exercise, etc) were a must, and this included drastic career changes if push came to shove. Self-education was vital, and support also mattered, but more in a social and community sense rather than seeking out fellow patients.
The patients in the study tended to shop around until they found a psychiatrist who suited them.
Eighty-five percent were on meds. Adjusting doses was par for the course, but meds changes were seen as minor compared to the life and lifestyle changes the participants were willing to make. Many combined meds with complementary treatments that included cognitive therapy, nutritional supplements, naturopathy, psychotherapy, Chinese medicine, massage, tai chi, meditation, and yoga (often over the objections of their psychiatrists). Ten participants stayed well on talking therapy without meds.
Dr Russell was particularly impressed by the “stay well plans” of the patients, which ranged from verbal understandings with family members and others to informal written documents. It wasn’t that the patients were obsessed with their illness. Rather, “when participants were feeling well, the illness was in the back of their minds. It did not play a large role in their lives, but they knew it was there. On the other hand, when participants encountered triggers and felt 'early warning signals', it was necessary to become more vigilant.”
Dr Russell's BookDr Russell expanded her study article into a 140-page book, A Lifelong Journey: Staying Well with Manic Depression/Bipolar Disorder. The book features the 100 patients in her survey in their own voices.
Says Jodie, 29, who has been episode-free for three years: "Changes I have made to stay well include moving from a ‘party house’ in the city (which I thrived on) to living by myself … close to the ocean. I left a highly paid, stressful, and social job as an events manager in the city. I am now a full-time student … I also gave up smoking marijuana and moved away from people who were not good for me."
In addition, Jodie learned to take her pills without resentment, has limited her social activities and involvement in various projects, and established a regular sleep schedule and other routines. Especially important, Jodie has developed "the capacity and insight to see episodes coming on." For example, when she finds herself talking very quickly and craving excitement, she implements her "action plan."
Dr Russell was particularly impressed with the "stay well" plans of the people she interviewed. Susie, for instance, knows her main triggers are family stress and caffeine. When she finds herself buying more than one lotto ticket, visiting adult bookshops, and writing late at night, she goes to battle stations. This includes limiting her coffee, restricting her access to cash, turning off her computer after 6 PM, and not going to night clubs on her own.
Recognizing early warning signs is crucial. Ellen finds diagnostic language obscure and unhelpful. Referring to the standard mania checklist of grandiosity and increased energy and the like, she reports: "I would be pretty far gone if I had all those symptoms. To manage this illness, I need to intervene a long time before I start making grandiose plans and taking myself on a major shopping spree."
Ellen relies on her friends to act as the canary in the coal mine. "I no longer confide in my family who have no insight into bipolar," she says. "The people who monitor my moods are the people who understand my illness. I trust my friends completely."
Alan takes charge of his illness by staying informed. The nurses in the hospital, he reports, "kept pushing the medical line – ‘take your tablets and you will be fine.’ They seemed to think the only treatment for manic depression was medication. If only it was that easy!"
Dissatisfied with the simplistic quality of the standard literature for patients, Alan began researching medical journals with a critical eye. "Some of the research methods are questionable," he reports. Nevertheless, "once I knew what was wrong with me, I could deal with it. I have not looked back since."
One Patient’s Wisdom"Let me give you a few tips of how I stay well with bipolar after 10 years ‘in the game,’" Damien told Dr Russell. On one hand, Damien acknowledges his need to be informed and vigilant. On the other, "I must loosen the tag on my forehead that says ‘bipolar’ and just get on with it … It’s an essential Zen paradox; take it seriously and not seriously at the same time."
Meditation and massage are two staples for Damien. Exercise, he says, gets the serotonin levels right and helps him "feel in my body." Laughter is also good medicine. Through his illness, he has achieved greater spiritual understanding and awareness.
Damien is microscopically attuned to early shifts toward depression or mania. Herbal tea, he says, usually "does the trick" for heading off a potential manic attack, but he has Zyprexa handy – as a standby med with the permission of his psychiatrist - just in case. He has used the Zyprexa twice in the past year. He maintains "humdrum" sleep and work schedules and relies on friends for support. He is not afraid to hit the mattress and "batten down the hatches" till a foul mood passes. "I have a fridge magnet," he concludes, "that says ‘Next Mood Swing in Six Minutes.’ Unfortunately, my low moods can last a bit longer than that."
Staying WellThe patients in Dr Russell’s book were successful in finding and applying what worked for them. Dr Russell spotted common themes, including:
- Acceptance – This is the first step to taking control to one’s life.
- Knowledge – "With time and experience, people can develop the wisdom to manage their illness and stay well."
- Sleep – "A crucial ingredient to staying well."
- Stress – "It is not always possible to avoid stress. It is possible, however, to develop strategies to minimize the impact of stress."
- Lifestyle – Diet, exercise, sleep, etc.
- Awareness and insight of triggers and mood states - This includes fatigue, jet lag, hormonal fluctuations, stress, lack of sleep.
- Interventions – such as canceling social engagements and getting a few good sleeps.
- Medication – "The right medication at the right dose."
- Support – "Outside insight" is often welcomed.
- Professional support – "It is worth shopping around for the most suitable healthcare professionals."