Coping with diseases can go beyond medication

by Tomoko Otake

Staff Writer

If you are diagnosed with a chronic disease, the shocking news can often lead to confusion and depression. Just the thought of the illness indefinitely affecting various aspects of your life can be overwhelming. And yet at the same time, you’ll find there is so much you need to do: learn about the illness, decide on a suitable treatment, and adjust your lifestyle. This could mean leaving jobs or negotiating more flexible work hours as well as, perhaps most importantly, coping with a gamut of unpleasant emotions, including anxiety, emptiness and even anger.

The Japan Chronic Disease Self-Management (J-CDSM) Association, a Tokyo-based nonprofit organization, offers to help the chronically ill with patient-to-patient workshops. The group uses a structured program, originally developed by the Stanford University School of Medicine, in California, that has proved successful and been adopted in more than 20 countries around the world.

Staffed by people who are suffering chronic diseases themselves, the J-CDSM, which launched in October 2005, has served more than 1,000 people in Japan. While a number of patient advocacy groups and self-help groups exist in Japan for specific illnesses, the J-CDSM is unique in that its program is available to anyone suffering from any kind of chronic disease. Of the participants, 18 live with fibromyalgia, a disorder that often involves muscle and connective tissue pain, fatigue and sleep disturbance, while the others span 191 different illnesses, many of which are incurable.

Having just celebrated its fifth anniversary, the J-CDSM has held workshops in 14 prefectures. But it needs more support to maintain and expand its operations, officials said, noting that it currently depends on membership fees and grants from pharmaceutical companies and other corporations.

Last week, at a symposium held by the J-CDSM, Junko Fukudomi from Kumamoto Prefecture recounted her 30-year battle with rheumatism. At age 28, Fukudomi suddenly started to experience pain all over her body, particularly around the knees, hands and shoulders. Then a mother of two small children, it was her first experience of a major health problem. She found making even the slightest of moves difficult, and the discomfort became so unbearable that she even refrained from taking fluids so she could reduce the number of visits to the bathroom. Her condition led to several bouts of pneumonia and severe weight loss, while the emotional stress put such a strain on the family that it eventually led to her divorce.

By the time Fukudomi discovered J-CDSM in 2006, she was already an active leader of the Kumamoto branch of a rheumatoid arthritis patient advocacy group, but her training at the J-CDSM, she said, gave her strength in ways the advocacy group couldn’t. “I felt so relaxed after taking the workshop. At the J-CDSM, I was not the head of a branch, and I could just be ‘Jun-chan,’ ” she said, explaining that talking with sufferers from other diseases helped her put aside her own problems and feel more empathetic toward others.

Some of the practical information offered in the workshop, which comprises six weekly 2.5-hour sessions, includes tips on how to better communicate with others. “We learn how to use ‘I’ as the subject of a sentence when we say something, instead of starting with the word ‘You,’ ” explained Hiroki Takeda, acting secretary general of the group and a hemophiliac who contracted HIV and hepatitis through tainted blood products. “Instead of saying, ‘You don’t understand how I feel,’ we encourage people to say ‘I want you to understand this and that.’ That way, you can communicate without making others feel defensive.”

A breast cancer survivor in her mid-40s told those at the symposium that the first thing she did when she discovered she had cancer was to blame herself, explaining that she almost thought of it as punishment for her bad lifestyle. “I was the type of person who would work until 2 a.m.,” recalled the woman, who asked not to be named. “I felt weak, powerless and passive.”

At the J-CDSM, she said she found the assignment of creating an individualized “action plan” helpful in getting past her feelings of helplessness. “It could be just listening to your favorite CD before going to bed three times a week, or reading a book for just 20 minutes twice a week. You list things that you want to do (and review your actions in the program). I began to regain a sense of self-control, a sense that I was doing everything I could.”

The J-CDSM workshop, which is currently held in Japanese only, costs ¥3,000 per person. For inquiries, visit www.j-cdsm.org. More information about the Chronic Disease Self-Management Program at Stanford University can be found at patienteducation.stanford.edu/programs/cdsmp.html.