Why Jake Discloses His HIV Status, Over and Over Again
November 13, 2012
Jake Ketchum got his HIV diagnosis in 1998 at a routine check-up right before the birth of his daughter -- and it was a big surprise. His then fiancée, Becky, was there to support him, and he claims to this day that his daughter saved his life and continues to motivate him to fight. Jake's dating pool prior to his marriage had included men; it was no different after he and Becky divorced, but now dating meant facing disclosure.
In this installment of This Positive Life, Jake recounts many instances of disclosure -- to family, friends, and potential partners. With him and his partner newly living together, Jake shares the hope he has of keeping his partner negative. Jake also talks about the triumphant rise in his CD4 count; moving from make-up artistry to HIV activism; and his little angel, Grace, who makes it all worth it.
Can you start by describing how you found out you were HIV positive?
I went in for a routine test. It was in late June of '98. About a month after I found out I was going to be a dad, I thought I should go in and get tested just to make sure everything was all good. Didn't consider myself extremely high risk. Really didn't expect to get the results that I did, but on July 13 that shoe dropped, and they told me I was HIV positive.
How old were you then?
I was 25.
How did you feel when you heard that diagnosis?
Immediately, tears. Luckily, my then -- or soon-to-be -- wife at the time was with me. She just grabbed a hold and supported me. It was a pretty emotional experience. I really didn't see it coming. I thought I was going to go in; they were going to tell me I was negative; it was going to be all good, just like every other time.
Was there an occasion that you were being tested?
I would go in about once a year.
That's an unusual thing for a heterosexual man to be consciously doing.
Well, at that time, I'd probably consider myself more bisexual. I'd had a relationship with a man prior to meeting my now ex-wife. That relationship lasted about a year. So there was some risk, but not ... I didn't realize his HIV status. He had alluded to it, but I really didn't pick up on all those subtle clues, because he never outright said it. And we had typically used protection. So I really didn't think it was an issue. Being that my ex-wife had gone through and gotten all the tests, being pregnant, I just decided that I should probably do the same thing.
What were you thinking and feeling at that moment?
It was like everything in me just left. I just felt empty and scared, scared to death. At that time, people were still dying pretty regularly.
How long did you feel that way?
I went home and cried for about three days, really. I drowned my sorrows in a few bottles of wine and just kept crying until, finally, Becky -- that's my ex-wife -- she said, "You've got to snap out of this. We're having a kid. You don't have time to sit around feeling sorry for yourself." And that was the slap from reality that I needed at that time. It really made me wake up and realize that I had a lot of things I still had to do. I had had my time to have my little pity party. So I started moving forward.
And along those lines, what was the first thing you did that helped you come to terms with your diagnosis?
I think that was a bit of a process for me. It took some time. It wasn't something I accepted right away. For about a year, anytime someone would ask, "Are you positive?" -- I would answer, "Can you rephrase that? I don't really like that term." I was in that state of denial that I think a lot of folks probably go through.
What was your relationship with the person who gave you HIV?
He and I dated for about a year ... we were monogamous.
Were you ever able to talk to him about your own feelings about having contracted HIV from him?
No. We had a rocky breakup. It was about seven or eight months after that breakup that I tested positive. By just doing the math and talking with the doctors, we identified that he is probably the one.
Who was the first person you told about your diagnosis?
Well, Becky, my ex-wife, was there when I received the diagnosis.
She was your wife at the time?
We got married a few months later. So, fiancée at the time: She was the first to know, because she was there. I've always had a pretty open relationship with my family. So within a couple of days, I had called my parents and my grandparents. I disclosed to them. To me, it was important to reach out to the people that I knew cared about me, for support. Also, too, we were expecting a baby and having some concern about their future and their well-being. Not knowing if I was going to be really present for that, I wanted to ensure that my family was going to be there to support that.
Your fiancée was pregnant at the time?
You had to disclose to a lot of people. How did you start that conversation? How did you disclose?
The first person that I told: I lived in Arizona at the time, and my family is all here, in the Puget Sound area. I called my dad and just told him that I had been to the doctor and there was something I needed to talk to him about. I told him that I'd tested positive for HIV, and I didn't have a lot of answers, but as I found out more information, I would let him know. Then I asked him to make sure that my family was going to be taken care of in the event that something happened to me.
We cried together a little bit. There was a little bit of an emotional aspect to that phone call. But it ended with him telling me that he loved me and that he would be there to support me. Being a couple of thousand miles away, there wasn't a lot he could do in terms of comfort or support, but he said, "You know I'm here for you. Let me know what your mom and I could do."
So there was about a month and a half of bouncing around, trying different doctors. Finally this hematologist said, "Hey, there's this clinic. They specialize in HIV care. That's where you need to go. You're not a hemophiliac; you've got HIV." So he sent me to this clinic that was specific to infectious disease and HIV. That's where I got my first labs, and really started to learn about what it was to manage and live with HIV.
My CD4 count when I was diagnosed was 8. My viral load was off the charts at that time. They could measure up to about a million copies, or so, and mine was just in excess of a million copies. So the outlook for me at that time wasn't really good. They gave me the standard: six months and "get your things in order." They referred me to an attorney who did pro bono work for people living with HIV. And I went and had a will drafted; I did my living will.
By this time, my daughter had been born. I had started a new job in my career. So I had a lot of great things going on, driving me. And having this doctor tell me that I had six months to live just did not sit well with me. I said, "I've got a lot to do, and I'm not going to get it done in six months. So I'm going to need a little more time than that."
He prescribed me a grocery bag full of pills. I took about 34 pills a day at that time. Every Sunday we'd sit there and we'd put them in a little pill holder and chart them out. They were pretty toxic, and the side effects were awful. Slowly but surely, I saw my CD4 rise and my viral load drop. I'm not happy that he's not with us anymore, but I do get some comfort in knowing that that doctor that gave me that diagnosis of six months died of old age a few years ago, and I'm still here and healthier than ever.
But it was at that time when a lot of these treatments were new, and they just had no idea. I can remember working part-time in a local gay bar and there was this huge celebration, because it was the first time that the local paper in San Francisco that year did not have any deaths related to HIV.
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