Why Jake Discloses His HIV Status, Over and Over Again
An Interview With Jake Ketchum -- Part of the Series This Positive Life
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.
I remember that specifically. That was a red letter day.
That was a pivotal moment, I think. I can remember other folks coming in and saying, "I'm HIV positive and I'm undetectable." I really didn't know what that meant at that time, but I can certainly appreciate what they were celebrating.
We talked about who the first people were that you disclosed your diagnosis to. How do you decide whether to disclose your HIV status to someone? What's the criteria? How do you make the decision?
I decided early on that I wasn't going to let judgment and stigma stop me from putting it out there. I facilitate a support group for people who are newly diagnosed, and it's a conversation that comes up often. For a lot of folks, disclosure is huge. They're very afraid of being rejected. For me, I put it way out here, front and center. I let everyone know. Putting it out there in public, allows it, if nothing else, to be a measure of protection for me. So I disclose to anyone. I talk about it freely as though it were no different than me having diabetes, or maybe an ingrown fingernail, or something. I want it to be out here, front and center. Because for me, the people that would really reject me or treat me differently as a result, they'll get to that barrier and they turn and walk away.
So I never have to see that. I'm pretty fortunate.
How have the relationships changed, if at all, among your family and friends since you were diagnosed?
My grandmother, who passed away a couple of years ago, she was the one that really was a challenge for me. I disclosed to her early on, as well, and she was very supportive. A very religious woman, so every time I talked to her, it was, "How are you doing? I'm worried about you. I'm praying for you." A lot of our conversations were more about me comforting her about the disease that I'm living with. It took me a while to realize that dynamic -- that there are some people that I've disclosed to that it then becomes more about how they're dealing with it than I'm dealing with it. I find that to be an interesting dynamic.
So some relationships changed in that way, where I needed to make sure they were OK with these challenges that I was living with. But the people that are closest and dearest with me -- my parents and my ex-wife -- are still very close. My ex-wife was probably my biggest supporter. She swooped right in and really, really made a huge difference.
Do you remember what you might consider the best response, or one of the best responses, when you disclosed your HIV status to someone?
I don't know if it was the best response, but it was probably the most interesting and unexpected. After my ex-wife and I divorced, I dated a guy here in Seattle. We'd gone out a few times, and this was over the course of about a month. You know, we spent enough time to get to know each other a little bit. But I felt like it was time to disclose.
We'd gone to dinner. Then we were sitting in my truck, talking, by a park over in Queen Anne that overlooks the Space Needle. I said, "There's something I really need to tell you if we're going to pursue this any further." That's when I started sweating and got really nervous. That was probably one of the only times where I got a little nervous about exposing, because it was the first time in a dating situation that I was disclosing. I really didn't want to get that, you know, big rejection.
So it took me about 10 minutes to actually work up the nerve. Then I finally just spilled it and I said, "I'm HIV positive." I looked at the ground, and by the time I looked back up, his response was, "I love you," which floored me, because, one, we hadn't known each other that long. But apparently my making myself so vulnerable to him at that point was something he really connected with. So that was probably the most interesting response.
Did that bode well for the relationship?
Oh, no. That freaked me out. I thought, "Wow. You don't know me well enough to use that four-letter word."
So you didn't find that endearing. You found it a little creepy?
In that moment, it was comforting and endearing. But when I got home, and I really started to process it, I felt like it was probably not an appropriate response.
My current partner and I have been together for a little while. We actually just moved in together a few weeks ago. His response, I think, was great. It was actually on our first date. I said, "Hey, just so you know, so you can make informed decisions going forward, before I ask you out again: I am HIV positive."
He just said, "OK, thank you for telling me." And it hasn't changed the relationship.
How has it affected your sex life?
We've had a couple of good conversations about it. Me being the one that's positive, I feel a little bit of a responsibility to protect him. But him knowing my status, I feel that he has some decisions to make for himself. We try to minimize the risk of our behaviors. We're not perfect at it. There are those moments where a momentary lapse of judgment has happened, and then we've talked about it afterwards.
We actually were just talking a couple of days ago about him going and getting tested -- he's about to -- and what that means.
I think it's important in a relationship, when you're serodivergent, with one positive and one negative partner, to keep that conversation going. I'm undetectable. I have been for several years now. And I'm very adamant about taking my medications every night. I've talked extensively with my doctor and other doctors about the risk factors. I know that being undetectable makes me a much lower risk. He's been part of those conversations. But the reality is that there is still a risk factor. And it would weigh pretty heavily on me if he were to test positive and I knew that it was as a result of being with me.
So it adds a new layer of challenges to our relationship. But I think, as long as the conversations are ongoing and open, and we talk about behaviors and fears and risks and possible outcomes, hopefully, we can minimize any sort of undue stress on our relationship.
What kind of relationship do you have with your doctor?
I have a fantastic doctor. I've been seeing my physician now since about 2004. I very much went doctor shopping at that time. I had a great doctor, but then he moved his office and I needed to find a new doctor. So I went out and I saw different providers in the community. And I really felt a strong connection to him. I can call his office if I have a question, and they will call me back that very day. If I feel like I need to be seen immediately, they usually get me in. And what I love is that he will take the time to speak with me openly and honestly about all topics. It never feels uncomfortable. I never have to feel like there's any shame attached. So if it's about risk factors with certain sexual behaviors, or risk to my partner, or additional risks to myself, I usually go in.
I'm known for having a list of questions when I go in for my regular checkup. He'll usually ask me, "What's on your list?" And we'll go down through the list. He takes all the time that I need, which, to me, is a big part of having great care, because I trust his responses. He's not afraid to tell me, "You know what? I don't know. But let me find out for you." He never makes me feel like he's making something up. He has been practicing internal medicine, specifically focusing on HIV, since the late '80s. So he's really seen the progression.
He does some public speakings, as well, that I usually attend. So we have a great relationship.
You are on HIV medication now?
And how long have you been on medication? Since you were initially diagnosed?
I was diagnosed in July. I started medications in October. And I have to tell you that in the thirteen-and-a-half years that I've been HIV positive, we have come leaps and bounds. I mean, from the 34 pills a day and having to set alarms and timers and reminders and everything else to remember to take them, and this one with food, and that one without. We had a chart on the refrigerator for years. Now, I'm taking one pill a day, right before bedtime. It's phenomenal.
What regimen are you currently on?
I take Atripla. I know that's one of those love-it-or-hate-it kind of drugs for a lot of folks. In the support group that I facilitate, that comes out a lot. There are those that think it's the worst medication out there, and they've had horrible side effects. I happen to enjoy the vivid dreams. My dreams are usually really good. So I sometimes can't wait to go to sleep and see what I'm going to dream about. Usually, it's some sort of rock star moment, where I'm onstage with some sort of celebrity. So I wake up feeling like I'm on top of the world.
That's a great attitude about a serious psychosis that happens when you fall asleep. I mean, you seeing it in such a positive light: It probably keeps it from veering off into something scary. That you look forward to it -- I think that that's great.
How do you access your HIV medications? Is it private insurance, or Medicaid, or you pay it up? How do you afford it?
I do have private insurance, and then that's supplemented by the ADAP program, or the Early Intervention Program, here in Washington state -- which may or may not change going forward. With our budget crisis that's going on here in the state, we're seeing services cut left and right. So I may be one of the ones at risk of losing that. If that's the case, my copays will go up significantly. Now, I'm only doing labs a couple of times a year, but I've also gotten to a place that I was told I would never get. When I was diagnosed and told I had a CD4 of 8, I said, "Well, you know what? I'm going to get back up to 600. That's my goal." I had a few doctors tell me that I would never achieve that goal. But I can proudly say that, in February of this year, I was up to 632 CD4 cells. So I'm pretty proud of that. I've worked hard for it.
To me, it's a holistic approach. It's not just taking a pill. It's watching my diet, exercising, not consuming excessive amounts of alcohol.
When you described just now how your T-cell count rose, you sounded like a proud athlete who had just had a touchdown, based on a lot of training. I mean, you take a lot of personal investment in that T-cell number and how it grew.
I take a lot of responsibility for my own health and well-being. I don't rely on my doctor to make everything better. To me, he's a tool. He's a place I can go for answers. He's a place that I can go for support and resources. But ultimately it's up to me to make the decision to take my medications, to eat as well as I can. I have my downfalls -- I love donuts, I love chocolate -- but I try to eat a somewhat balanced diet. I try to make sure that I take care of myself overall, both physically and emotionally.
And your viral load?
My viral load has been undetectable since early '99.
That's a very long time.
Yeah. Especially in the early days, those medications, they made me pretty sick. There were some days where I couldn't go to work, or I'd have to leave work. It wasn't always easy, but I took them. Anytime I doubted it, all I had to do was take a look at my daughter and realize that there was something that I had to live for. To this day, I call her my little angel, because she came into my life at a time where I really needed her. And she gave me everything to fight and live for.
Do you have any other habits to maintain good health?
Yeah. I will admit, I have an off-again, on-again routine at the gym, where I'll go and I'll hit it like six days in a week, and I'll hit it hard. Then I'll take a couple of months off.
For me, one of the biggest things has been learning to embrace my HIV status, not allowing it to bring me down, but lift me up. The more I'm able to get out in the public and speak about it, and talk to others about it and educate them, it empowers me and makes me feel a little bit stronger.
Having a great support system has been vital in my living with HIV -- quite successfully, I think, for many years now.
What kind of work do you do now?
I'm the program manager for a local AIDS support organization. We're now called Seattle Area Support Groups. But the organization was founded in 1984 as Seattle AIDS Support Group. It was founded at a time when people were dying quite often. We have a "Passages" section on our website that's quite extensive. It shows just a small glimpse of the number of people here in Seattle that were impacted, and passed away from HIV. I get goose bumps thinking about it, and I get a little emotional. Because it's really [heartbreaking] to me to look through our archives and see a lot of these guys that were my age, at the prime of their life, and they had goals, they had dreams, they had plans, they had a future ... and it was just taken away from them in a very short amount of time.
It also makes me extremely grateful that I'm here to hopefully kind of carry on that legacy for them. They founded this organization for people to come together and find support amongst themselves. I actually came to find that place when I decided I wanted to volunteer and give something back to the community. So I started facilitating a support group there.
I had no idea what it was going to bring into my life. The people that I've met have been amazing. And trying to provide to the community has been a tremendous outlet of support for myself.
How did you become involved in HIV activism?
I joined the HIV Planning Council for the Seattle King County area, which is now the Transitional Grant Area. It includes two other counties: Snohomish and Island Counties. I saw a flyer at a local organization here where I see a case manager. And something spoke to me. I looked at it, thought about it. The next time I was back in the office I saw it again. It was still there; it was still kind of speaking to me. So I jotted down the number and I gave them a call. I interviewed, and joined the Planning Council about a year ago. It's a body that's responsible for allocating Ryan White funds to service categories for people living with HIV. So it's a way to actually have some impact on the services that some of our peers are receiving in the community.
Through one of their subcommittees, we decided that last year, during the legislative session, that we wanted to go meet with lawmakers and we wanted to advocate for folks living with HIV, and have a little bit more of a voice in the process. So a small group of us came together and formed our own little advocacy group, and put on a training to teach people about the process, about how to use their personal story, and how to convey that in an effective manner.
Then we loaded up and we went to Olympia and spent a day meeting with legislators. That's when I realized that it just takes some effort and speaking up to actually make a difference. Because some of the legislation that came out last year directly reflected the message that we took to them.
It was very empowering to know, one, that they were willing to listen to us; and, two, that they took that back to their peers and made some decisions based on what people with HIV were actually saying that they needed.
Since then, I've just continued to stay a part of that group. Now we're looking to branch out and make it more of a statewide effort.
What do you think are the biggest issues that need fixing in HIV today? And how do you tell people how to do something about it?
One: I think we just need to reignite the conversation. We need to get folks talking about it again. I think that with the advent of such great medications, there's become some -- I don't want to use the term "complacency" but -- a little bit of this, just, acceptance of it. And so I think that's one issue, that we need to start having a conversation about it again. We need to have a little bit more of that sense of urgency that once was. People aren't dying anymore, but it's still a life-changing experience.
The other thing that I've had many conversations about with colleagues and friends and peers in the community is the issue of stigma. You know? And prevention messaging. A lot of it is, "Protect yourself, because you don't want to get this disease; it's really bad." There's some truth in that. But at the same time, it's perpetuating the stigma and further taking away from those individuals who already have it.
So the question that comes up, that I don't have an answer to, and that I don't know that anyone does at this point, is how do we effectively communicate, "You need to protect yourself; you need to make smart choices; you have a right to protect yourself," without further stigmatizing folks that are already living with HIV.
Compare for me how you feel about having HIV now to your feelings when you first learned you were HIV positive.
When I first learned I was HIV positive, I was afraid, I was ashamed, and I was angry. Now, I'm quite proud and OK with it.
What advice would you give someone who had just found out they were HIV positive?
Give it time. Know that this process is different for everyone. My story is unique to me, and I know that not everyone is at the place that I'm at. But for me, the one thing that it took was just time: time to accept it; time to get used to it; time to embrace it and get out there and wave my little flag now.
So time is one of the things that I've noticed. This support group that I do for newly diagnosed folks: I can kind of watch them. They'll come in that first time terrified, scared. "My life is changing."
I ask them usually at the end of their first time in the group how they're feeling. And the one thing they always say is, "Relieved." So I'd say give it time. Also, don't be afraid to reach out and find someone else who's got some experience with it. Because it's not a deal breaker. It's not a death sentence anymore. It does change your life; I'm not going to lie. But it doesn't always have to be for the worst.
Is there anything that you might have wanted to include that we have not discussed?
Just letting folks know that they do have a choice. It's the one thing that I look back on and think: I don't have any regrets; I don't want to go back in time and change anything ... but I wish I had empowered myself with a little more knowledge when I was younger. I thought I knew something about HIV and AIDS but, in reality, I knew nothing. I knew what I'd heard on the news, and tidbits of information here and there. But especially in the gay community, I think it's important for folks to know what they're up against, and know what the reality is. And know that they have choices.
This transcript has been lightly edited for clarity.