Mr. Hidehito Doyama

Personal Profile: Mr. Hidehito Doyama
“Something I have never seen”

“My life is only to endure pain. For what am I living?” I recall I have repeated this question quite a few times. I had no choice but to lie in bed. But I was short of breath. Even though I was hungry, I could not go out to buy food. My heart was full of anxiety and despair. Yet I did not know what was disabling me.

I am a 36-year-old cosmetics company worker in Tokyo. Before I got sick, I was confident of my health. I belonged to baseball club and was also a sprinter. Then suddenly at age 15, I had terrible problem with diarrhea and my legs and hands lost their strength. A doctor admitted me to the hospital and I was diagnosed with Guillain-Barré syndrome. But I was optimistic. I believed I would recover, because all illnesses I had at earlier ages were cured and this disease would be too.

The doctor said to me, “You will recover soon.” But the disease did not disappear. I was given steroids. After a while I felt malaise with a fever around the noon every day. My hands and legs recovered almost all their strength, but I still felt sick and had a slight fever.

I entered high school. Feeling tired, I managed to go to school. But it was difficult for me to understand the classes because of fatigue and lack of concentration. I was struggling by spirit. But my condition got worse and worse. It got difficult to attend class and often I had to take a day off. I felt so depressed. After high school graduation, I was not able to work.

I would try to do something, but it became impossible to achieve it even halfway. So I felt depressed. I repeated this cycle many times. I was irritated with my body which could not move the way I wanted it to do. My intellect drastically deteriorated. It was hard for me even to talk with people. It was a pity that people scorned me because of brain fog, too. Gradually I was losing force of will as well as physical strength. My optimistic mind turned into the mind full of despair and anxiety. At last I fell into nihilism. This illness robbed me of not only physical ability, but also thinking ability, friends, hope and pride one after another.

I went to many hospitals, but the doctor told there was nothing wrong or I was only suffering from mental illness. I got various diagnoses.

One day I saw a news article about chronic fatigue syndrome. The symptoms of it were similar to my condition. Maybe I was suffering from this illness? I saw a doctor at Osaka University Hospital. Finally, I was diagnosed with CFS. It took more than 12 years to get the diagnosis. They prescribed Chinese medicine and vitamins. The treatment improved my fatigue and brain fog somewhat. Sometimes I was still confined to bed because of malaise. I looked for effective treatments in books and on the Internet. There was no cure, but there were some effective treatments. I would try one treatment and another one if it had no effect. The effective ones for me were acupuncture, Chinese medicine, some supplements and SSRIs.

I participated in CFS research. The near-infrared spectroscopy analysis and gene expression in my blood showed abnormality that fit in CFS patient pattern. This was validating for me.

I was so glad to read about the press conference sponsored CDC in 2006 in the CFIDSLink e-newsletter of the CFIDS Association. Of course I felt happy that our illness had been declared to be real and serious. Even more satisfying was the that the doctors delivered affectionate words to the patients, who had been often ignored or even despised. Dr. Julie Gerberding, Dr. John Agwunobi, Dr. Nancy Klimas, Dr. William Reeves, I really appreciate for your words and efforts. President of the CFIDS Association, Ms. Kim McCleary, and Ms. Adrianne Ryan, I would like to appreciate for your efforts and courage, too.

Thanks to the treatments, my condition improved somewhat. I can work full-time now, although sometimes I have to take a day off. Brain fog sometimes creates trouble for me while I am working. Sometimes I still feel depressed. But I am much happier than other PWCs, maybe because I got a diagnosis and can work.

I hope that everyone has a right acknowledgement. I would like people to know we are struggling, not lazy. I would like people to know we don’t want to burden people around us, but we do ask for their help. And I hope more medical professionals and the government will define our illness as serious. The right acknowledgement of CFS will require a system-wide paradigm shift, just like when the Copernican theory (earth rotating around the sun) replaced the Ptolematic theory (sun rotating around the earth).

After I got sick, I thought about dying many times. But I looked into my mind deeply. I found I didn’t really want to die, but I hoped to rather live than die. I just wanted to escape from pain. I felt there is something to do, something to feel and something to see in the future. I still don’t know what they are. But if I continue to live, I may see something to see some day. I am looking for the day.

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