Culture Clash:
Experiencing CFIDS in Japan

By Rika Kageyama

I am one of two volunteer translators who are doing our best to translate into Japanese precious information about chronic fatigue syndrome that has been published in English. I also have translated Japanese papers into English. The translations are posted on the Internet by Sage Matsushima, web master of CFS Network Japan (http://www.bekkoame.ne.jp/~sage-m/) and the leading political activist on behalf of CFS patients in Japan.

The work is difficult and tiring, and because of the custom in our culture against self-promotion, most of our work has been done anonymously. Nevertheless, I will tell you about myself. I have suffered with CFS for almost 20 years. My onset was sudden, at the age of 15, in 1979. However, I was not diagnosed until 1989, while I was in the United States as a college student.

Although I tried in vain to complete a master's degree at the University of Washington, I had a wonderful and beautiful time for almost three years in the United States. There, I knew that I did not need to blame myself for my illness and that I should not be afraid to be helped by other people. That is totally different from the way sick and disabled people are treated in Japan. When I returned to Japan in 1991, I had to forget about those memories and tell myself that in the United States I was spoiled and that my experience was not real in order to adjust myself to life in Japan. 

I had a rough time in Tokyo because the majority of Japanese doctors were completely ignorant about CFS, despite a working party on CFS set up by our government in 1992. My battle continued until 1996 when I found my current doctor, who showed me a learning attitude. I remember that I felt as if I was sliding back in time during the difficult battle against doctors in Tokyo. Even now, CFS is still largely unknown in Japan for the lack of information.

I don't want to express my situation as sad, although it sounds miserable. It is truly my choice to be here in Japan to take care of my mother, who loves Japan so much and whom I love so much. So I don't think I could leave Japan while my mother is alive, and I want her to live as long as possible. But honestly, it has been very difficult since coming back to Japan.

Recently, I heard the new word "challenged" on TV news for the first time to describe disabled people. The newscaster commented that in Japan, we have misinterpreted the word "independent," which has been used for disabled people in the West, and we kept requiring disabled people to support themselves by themselves. But in the United States, disabled people are thought of as people given challenges by God and worthful people to be helped by healthy people. It will be a very difficult thing for Japanese society to accept this concept, but I hope I will be able to share what I learned from American people with people around me here, including with my mother. This could be my true "grassroots activity."

Last year, Dr. Hirohiko Kuratsune at Osaka University's blood oncology department, one of the official members of the Japanese working party on CFS, introduced me to Sage Matsushima's web site, CFS Network Japan. We had been talking about the efforts that were being made against our Health Ministry's discouraging decision to close its official working party on CFS. Eventually, the party was closed, but because of the hard work of patients to lobby against the decision, CFS research was not abandoned altogether. CFS is still being studied in Japan under a different working party on "Fatigue," but the Health Ministry is currently said to be spending only about $34,000 a year on CFS.

Since then, because I was quite well-informed about CFS through my friends in the United States, by a wonderful doctor (my ex-physician in Seattle, Dr. Richard Muirhead, who has continued to be supportive of me), and by being able to use the Internet, I have played a role as an information supplier to Japanese CFS patients via Mr. Matsushima and CFS Network Japan. I am very honored to be working with Mr. Matsushima, who has made a great and valuable effort to bring together and help many Japanese CFS patients by meeting them and exchanging mail. Also, regardless of his own difficulties and the fact that CFS Network Japan gets so little in donations due to our social custom, Mr. Matsushima has even shared his own limited income to help CFS patients with severe financial problems.

My motivation to dedicate myself so seriously to this translating role also comes from my astonishment at the typical behavior of patients in Japan. Generally patients have had very little information about their own illness and they been so obedient to doctors' words. If doctors say "There is no medicine for CFS," then patients believe the words completely, they thank their doctors and give their life up without any effort to break through. What I wanted to do has been to shout to them, "Hey, there is endless hope outside of Japan! Don't give up!" I learned that supplying the information from outside of Japan is the only way for patients to be aware of it. Dedicating myself to this role has also helped me to make living matter, despite my condition.

Just recently, I heard discouraging reports from Mr. Matsushima that patients who have taken our translated information on CFS to their doctors have gotten quite unpleasant reactions from their doctors. Still, I believe that only well-informed patients can give our doctors and our government the kick in the rear that they need. This is what I learned in the United States.

From my own experience of the medical world in both the United States and Japan, I am keenly aware that even today, the Japanese medical world is much more closed to accepting CFS than the medical community in the United States. My hope is that our translating project will be able to spread valuable information about CFS and become a grassroots activity that could have some influence toward opening the narrow attitudes of the medical world in Japan about CFS and for the ultimate benefit of patients, doctors and society here.

Rika Kageyama lives in Tokyo, Japan. She provided translating assistance to The CFIDS Association in obtaining comments from Japanese PWCs on the name change criteria.