Ms. Yoko Mitamura

Personal Profile: Ms. Yoko Mitamura
"What CFS Gave Me"

I am a 33 year-old-woman living in Japan. Nineteen years ago, I got CFS. In the month of May when I was age 14, I got a terrible headache during class and went to the nurse’s office. This was the start of my body’s big change. I left school and took medication for the headache, however this extraordinary headache would not be alleviated. I stayed home all day the next day, but there was no sign of recovery.

On the following day, I saw a doctor in my neighborhood for the first time. He examined me and gave me a CT scan, but they did not find any abnormalities underlying my headache. The doctor said, “Some days’ rest will cure you, because you may be very tired.”

My headache was a little improved the next week, so I went back to school. But soon I had a terrible headache again and had to rest in the nurse’s room and then to leave school again. After that, I sometimes could not go to school or had to go to the nurse’s room. I was very shocked to have a such a terrible headache every day.

Before I got sick, I loved playing in a wind ensemble, a club activity that was outside my regular school schedule. I had practiced both in the morning and after school every day. I was beginning to play a leadership role with the club. Thinking back now, I remember my body was changing before I developed the terrible headache, but then I didn’t worry too much about things. The new term started and that April I was so busy that I could sleep only 2 or 3 hours a day. It was getting harder to wake up. At first, I could attend the club activity in the morning. But gradually it got harder to attend the club and it became confusing to practice and prepare, even when I had enough time to attend. I cut back and then the terrible headaches began.

As the weeks went on, I went to a general hospital and a university hospital, but the blood tests they did showed no abnormalities in my body. The doctor said I might have a mental problem and recommended that I go to counseling. I saw a doctor about twice a month regularly. It was 1990 and chronic fatigue syndrome was not well-known.

Before the summer holidays, I developed both measles and hepatitis A and was in hospital for 11 days. My immune system might have been weak. I had to lie in bed almost all of the time. Unfortunately, my illness began the year before our entrance examination for high school. My teacher told me to I had to come to school because the number of days I had attended were insufficient. So I tried to do so, but by then I had not only terrible headache but also nausea, slight fever, and swollen lymph nodes. I was so sluggish. I forgot the dates of important engagements. I lost track of my classmates. New symptoms kept appearing. I couldn’t understand the classes at all. Finally, I had to quit going to school.

After summer holidays, my sleep rhythm got reversed. I took sleeping medications in addition to the counseling, but it didn’t help much. I could not wake up in the morning; I could not sleep in the night. I was so depressed that I thought of dying every night. My days were full of pain after I quit going to school. I could not attend school although I wanted to. I blamed myself for that. I disappointed my parents. I asked myself, “Why doesn’t my body work?” I worried.

I could attend only one-third of my classes that year, but I managed to graduate from junior high. I started to take a correspondence course for high school. I almost always stayed at home and barely managed to attend class 20 days a year.

I resigned the high school but I passed the qualification to take an entrance examination to attend university. After two years of cramming, I also passed the entrance examination of the university to study architecture through night school. But the school was situated far from my home, so I had to live alone for the first time. I had headaches and fatigue, but my sleep disturbance improved, so I could attend school almost every day. I improved enought to take part in daily activities, but when I got home after class, I didn’t have the energy to study. For two years, I tried to make it work but I finally had to leave the university.

Dr. Kuratsune (far right) and his team at the Osaka City Hospital Clinic

I was diagnosed with “dysautonomia” and continued on the treatment I was given when I was in the hospital, including the counseling. There was no sign of recovery. The doctor did not make a clear diagnosis and said “It is not depression, but...”

One day I found a magazine article about CFS by Dr. Hirohiko Kuratsune. The criteria described my symptoms exactly and I was confident for the first time that I was suffering from chronic fatigue syndrome. I saw Dr. Kuratsune in Osaka University Hospital and, after more than 10 years after I became ill, I was diagnosed with CFS.

Since then, I regularly go to Dr. Kuratsune’s clinic at the hospital in Osaka; I also go to the counseling clinic in my neighborhood. I take a combination of SSRIs and vitamins. I recently started treatment with acupuncture and Chinese medicine. They treat me not as a CFS patient, but for my individual body traits. My condition has not improved dramatically, but I spend less time in bed. I am more blessed than other CFS patients in Japan because I can see a CFS specialist, who offers me new information. In the mental clinic, the clinician offers me medications according to my CFS symtoms and provides counseling for my depression.

CFS is not well-known in Japan. Some patients can’t declare themselves to be CFS patients. In family, school and the office they seldom understand CFS patients. They tend to think we are lazy or that a good attitude will cure you. They cause much more pain for CFS patients. In fact, I often feel worried because of the lack of understanding.

Social life for CFS patients is limited as well. Last autumn I was granted disability benefits, but it is not enough money for me to be economically independent. In my case, I live with my parents and rely on their support. But in the near future I will have to rely on my parents’ pensions. It will be harder to get support from them because of their ages. And I will blame myself for that, too.

One of the hopes for CFS patients in Japan is to find friends who understand our illness. We feel isolated and in despair because of this isolation, I think more than because of CFS itself. In Japan we need CFS to become better known. The Japanese government should promote the study of CFS, and offer economic, physical, and mental support more aggressively. CFS should not be seen in prejudice or misunderstanding; it should be respected like other illnesses.

At last, I experienced many hardships because of CFS. Still now I feel sad sometimes. And I can’t do or have had to give up many things. In the past, I thought of dying many times. But I don’t hope to die now. CFS is becoming part of me. And I can think it is okay.

During these 19 years, I lost many things. But I can view my life because of the illness. Eventually I can feel more empathy with others than before. This is my very great fortune. And I always talk to myself, “It is enough to do what I can do. I don’t have to do what I can’t do.” So, I would like other CFS patients not to be in despair. You may think of dying like I used to. But please wait until the storm passes by. I believe the day will come when we can enjoy living again.

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Grateful thanks to Hidehito Doyama for his help in translating Yoko’s story to English. Yoko’s original story in Japanese can be viewed by clicking here. We will continue to bring you more stories from CFS patients living in other countries, to share their experiences and connect our community around the world. Hidehito found the CFIDS Association on Facebook. Join us there today!

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