3 to 6 months after I found out I was HIV positive in Japan

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3 to 6 months after I found out I was HIV positive in Japan

This is one story of a Japanese gay man in Tokyo who has HIV.

“You are infected with HIV”

HIV

I found out that I was infected with HIV in April, 2014.

Hearing that one of my friends was going to go get tested for HIV, I decided to do it too, which was something that I had thought I should do many times, but hadn’t. Where I got tested was the Shinjuku South Clinic, near Shinjuku Station. Basically, it is really frustrating to get tested in Tokyo, but since it is possible to find out which days it’ll be crowded and reserve a time on their website, and as it is located near the biggest station in Japan, I managed to get myself to go, despite my being a lazy bastard.

They took my blood, I asked when to come back, and then the whole process was finished; it was that easy. The whole process was done anonymously, so there was no moment that I felt nervous or scared. It was just like going to the dentist.

I remember when I went there again to get the results–till the day I die, I won’t forget that day. I always used condoms whenever I had sex, but there were a few times I got too drunk and found there was a strange guy sleeping next to me in the morning. Therefore, I was a little worried I might have had sex without a condom one of those times. I knew I had a problem with drinking and risk management, but as I was young, I didn’t take it so seriously. When I went to the Clinic to hear the results, I was thinking “Usually I have safe sex. I won’t be infected since I only was unsafe a few times…”

In the clinic, the doctor said to me “Your test number is ○○○○. Is this correct?”

I replied yes, but the doctor asked again, “I want to confirm, so I’ll ask again. Your test number is ○○○○–I s this correct for sure?”

I thought it was weird that he had asked me twice. Why had he asked me twice?

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“Yes.”

The doctor said, “I will tell you the result. You are infected with HIV.”

Feeling like my spirit had left my body

“Oh well….”

I can’t forget the moment. I felt the like my spirit had left my body. It was like the moment that a student who has been studying for five years to pass the entrance exam for Tokyo University finds he has failed. The sounds and voices went on around me, but I felt like I was the only person in the world.

“I’m in my 20’s…”
“I’m still young….”
“What I should say to my parents?”
“It can’t be cured…”

I had too many thoughts like these at that time. I was not able to hear what the doctor was saying. He was saying something, I could hear, but I couldn’t understand. Yet I did come up with one phrase: “I ….I want…. I want to live…!”

It was not that I was going to die soon, but at that time, the only thing I was able to do was just think “I want to live.”

“I want to live. To live, what should I do? Information. I must understand my current condition, what HIV is about, what I will be from now on, and what I have to do to live now. If I find the correct information, I can make the right decisions, and then I can live, right? Then, what is that thing I need to do now–to listen to what the doctor is saying to get the necessary information. Listen to what he is talking! Skip the shock, just for now! Concentrate to understand what he is talking about!”

I was able to stop my spirit from fleeing from my body and I asked the doctor to explain about my current condition, what HIV is about, and what I was going to happen from now on. Though it will sound dramatic, I remember that was the moment that my survival instinct kicked in hard.

Unable to stop crying after the news

Listening to the doctor’s explanation, whenever there was a part that I didn’t understand well, I asked him to explain once again. I understood five things. First, it wasn’t 100% that I was infected with HIV, so that I needed to get tested again at a bigger hospital. Second, my immune level would, henceforth, be described as my CD4 level. Third, if my CD4 was lower than 200, I would have AIDS and I’d be in a really dangerous situation. Fourth, I wouldn’t know what exactly my CD4 number was until I went to a big hospital. Fifth, I needed to register for a Shogaisha-Techo, a disability certification card.

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I was able to understand roughly what the doctor had said and, after seeing the doctor, I met a counselor and she told me that it was her first time seeing a person who didn’t cry after hearing they had HIV. Usually, she said, people couldn’t stop crying when they heard.

After that, I got some papers and books about HIV, left the clinic, and called a big hospital to ask for a new HIV.

My first panic attack

I went to the Tokyo Medical University Hospital to do the test again, and I was told that I was HIV positive because of my CD4 number. My CD4 was under 200. I thought that it might be some mistake of the clinic’s…which was totally wrong. The results showed that I was infected with HIV, which is not something we are able t ocure.

I understood. But my mind couldn’t accept it.

My parents didn’t know even that I was gay then. I couldn’t tell my parents that I was infected with HIV.
I was just twenty years old. For the rest of my life, it won’t be cured. It could last for 50 years or more. What should I do?What should I do, what should I do, what should I do….

Those two or three weeks were the hardest days in my life. I was not being able to think things through well. I wasn’t able to listen to what other people were saying.

One day, I felt something was wrong with my sight. I could see, but my it looked like I was watching TV from somewhere. It was like, I was somewhere in another world and seeing reality from there. I wasn’t able to sleep at all, and I was unable to get up because my body so heavy. I just stayed in bed all day, but even that hurt, and I couldn’t stop crying. This was so strange, I saw a psychiatrist. She said it was dissociation–that when people get too stressed, it happens. That was my first time with a psychological issue. I took anti-anxiety pills and felt calm, but soon it began to hurt again and I stopped.

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Even breathing hurts…

Even if you are infected with HIV in Japan, you can’t get HIV medicine immediately. They are expensive, so you can’t pay for them using Japanese national health insurance.In Japan, people need to pay 30% of the whole cost of medical treatment and medications. First, you need to get a Shogaisha-Techo, a Disability Certification Card) and use the Jiritsushien-iryo-seido, a kind of medical system in Japan, and it takes time to get it. Until you get it, you need to prevent diseases caused by HIV. What you have to do is, get this inhalation therapy in a hospital.

This inhalation is needed to prevent from AIDS-related diseases, caused by HIV. The drugs are directly inhaled into your lungs. It’s like inhaling steam, which includes medication to prevent AIDS, for 30 minutes and it tastes really bad. Coughing, crying a little bit, thinking that I needed to do this to live, and just breathing. With each breathe, I thought only about why I needed to suffer such a hardship, why I needed to live, why I was born. Every time, on the way to and from the hospital, I cried. After I got the Techo, I didn’t need the therapy anymore. The people at the Tokyo Medical University Hospital were also pleased to know this and I was obviously overjoyed with the fact that I wouldn’t need to inhale that horrible, painful medicine anymore.

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