I think I hold a unique place in the history of this epidemic: As far as I know, I'm the only person ever to be happy to receive an AIDS diagnosis.
Anyone who has an undiagnosed illness will tell you that not knowing why you're sick is actually worse than being told what you have. At least, if you know, you can make a plan of action. But without that information, you're stuck. And you're often told that it's all in your mind.
My problems began in 1981, when I developed a low-grade flu. I wasn't sick enough to be at home in bed, but I still felt lousy. And this wasn't the first time this had happened. I seemed to get sick all the time, even though I was only 25, went to the gym five times a week, ate well, never smoked and never did drugs. I did do one thing, though: I had a lot of sex. Actually, a ton of sex, with a ton of partners. But we all did that in the 70s and 80s, and as long as you went to the STD [sexually transmitted disease] clinic every three months, all the doctors said that was fine.
In April of 1982 my symptoms got worse, and I went to the ER [emergency room] to see what was up. I remember being seen by the attending physician and a couple of med students who asked me a battery of questions. They ended up telling me I just had the flu and I should wait it out.
"But what's wrong with me? I'm 25 years old and I take good care of myself, but I'm always getting sick: sore throats, the flu, feeling lousy and now I'm losing weight. What's happening?"
The doc asked the med students to leave the room and closed the door. His voice got low and his tone became very serious. "What's your sexual preference?"
"I'm gay. Why?"
"Have you heard of A.I.D.?" (I remember that he did not use the "S" -- maybe that hadn't been added yet.)
"No. What's that?"
"It's a disease that we're seeing in gay men. It damages the immune system."
"Oh. What causes it?"
"We don't know."
"OK. What's the treatment?"
"There is none."
"So what should I do?"
"We don't know."
That conversation may sound pretty frightening, but actually it was the best thing that could have happened to me. You see, up to that point, I had looked at doctors as gods -- you had a problem and they healed you. It was almost magical. But here was a doctor saying I was seriously ill and he didn't know what to do. I could have curled up and cried, but instead I said, "OK, I'll do for myself." That was the moment when I realized that I was in charge of my health, not some doctor.
I was sent to Northwestern University for a new kind of test called a T-cell test. I don't recall the result, but I know it was below normal. Northwestern also had nothing to offer me, though.
But I was so happy to put a name to what I had that I began telling everyone. "I have this new illness called A.I.D. and it's why I've been so sick! It's some problem with the immune system!" No one back then knew that I was gay, but no one was talking about AIDS, so no one made the connection. Looking back on it, it's pretty funny that I was so casual and open with my brand new AIDS diagnosis, but my attitude was that I was going to beat this thing. Giving up never occurred to me.
I went to the health food store and tried whatever I could find: aloe vera juice, herbs, vitamins. I forced myself to go back to the gym. I stopped alcohol and poppers (I had read a blurb in Gay Chicago News headlined "Poppers Linked to Gay Cancer"), and I forced myself to eat. I recall going to Frances' Deli -- a steam table cafeteria -- and loading up my plate with food. I would not allow myself to leave until I had finished it all -- and sometimes that took hours.
But slowly, day by day, I got better, until I looked good enough to return to the bars and meet Scott, my first boyfriend. I remember telling him, "You know, I had AIDS, but I got over it." He said, "OK, I don't need a condom." It was only years later that I learned you couldn't "get over" AIDS.
But here I am, three decades later, still surviving both AIDS and anal cancer, and still a loudmouth activist. My boyfriend says they have a saying in the Philippines: "Bad grass never dies." That's me -- stubborn as hell and planning to be a pain in the ass for years to come!
Want to share your own "Day One With HIV" story of finding out your diagnosis? Write out your story (1,000 words or fewer, please!), or film a YouTube video, and email it to email@example.com. In the coming months, we'll be posting readers' "Day One" stories here in our HIV/AIDS Resource Center for the Newly Diagnosed. Read other stories in this series.