Serodiscordant: It's not a word you hear every day. It's a relationship in which one partner is HIV positive and the other partner is negative. It's the reality for many couples out there, including Peter and Kathy McLoyd, who had been longtime friends and colleagues until 2004, when they began dating and got married -- all in the same year.
While many believe HIV is a challenge too big for a couple to overcome, nothing could be further from the truth for the McLoyds. Together, they told Kathy's family of Peter's HIV status; together, they make sure Peter adheres to his medication; and together, they are trying to raise awareness around other couples like themselves. There is no distance here; their love is a glue stronger than HIV, and it is crystal clear that they are each other's hero. Now, if Kathy could just get Peter to stop smoking.
Olivia Ford: Peter, could you start by telling us how you first found out you were HIV positive?
Peter McLoyd: In 1996, I had quite a few emergency room visits to the hospital. I was diagnosed with bronchitis once and a couple of times with thrush. At that time, I was an active substance abuser, an IV drug user with heroin being my drug of choice. On one of those visits, the emergency room physician told me that thrush was an indication that I might be HIV infected. But he didn't offer me HIV testing or tell me where I could go to get tested. Eventually, I went and was tested in February of 1997. I tested positive for HIV and was actually diagnosed with AIDS shortly after that and was in the hospital for a couple of weeks. That was here in Chicago.
Olivia Ford: When you first got your diagnosis, what were you thinking and how were you feeling? Did you know anything about HIV?
Peter McLoyd: I knew a little bit about HIV. I knew that sharing needles was a risk factor. I knew that, in the course of the many years, over 25 years of using drugs and shooting heroin, that I had, in fact, at times shared syringes. So I knew that much. So it wasn't a big surprise that maybe I was HIV positive. What was shocking was that it was an AIDS diagnosis as well. That was a bit of a shock.
Olivia Ford: Were you two together at that point?
Kathy McLoyd: No, not at that point.
Olivia Ford: We'll definitely come to where you enter the frame in a little bit, Kathy. But, Peter, how did you first come to terms with your diagnosis? Who did you first tell?
Peter McLoyd: I told my family. I'm pretty close to my family, even though I had given them fits over the years, because of my issues with drugs and things like that. But I felt comfortable sharing it with them -- my sisters and brothers, and eventually my two children. It was a wake-up call in terms of the drug abuse. When I entered HIV care and treatment at what was then Cook County Hospital, I was also offered an opportunity to get engaged into substance abuse treatment, and I was really motivated. I was motivated to stop using drugs and I was motivated to get whatever treatment was available for HIV. That led me into doing some volunteer work and becoming a peer educator. And eventually, finding a full-time job doing this work.
Olivia Ford: What was the span of time between 1996, when you were coming down with these illnesses, and your actual HIV diagnosis, and then getting into recovery and then starting to work in the community?
Peter McLoyd: It was fairly quickly. I think I entered into care in the early spring of 1997. That summer, I was really motivated by some of the other individuals who I met, who were living with HIV, who were doing volunteer work, and who were peer educators. I thought it was something that I would really like to do. I had to go on disability right away, because I was so sick and I had lost a significant amount of weight. Once I started on antiretroviral therapy, it was amazing; within a couple of weeks, I felt different and I wanted to really do something productive with my time. In the fall of the first year, I started doing some volunteer work. The organization where I was receiving care opened its doors in October of 1998: the Ruth M. Rothstein CORE Center. I became a volunteer and a peer educator there. Eventually, I was hired for a full-time position as an outreach worker. That was the catalyst for not just doing outreach work, but being an advocate and developing my skills as an advocate and it just kind of mushroomed from there.
Olivia Ford: All right. When did you two meet each other?
Kathy McLoyd: Well, I came on board [at the CORE Center] in 2000. I met Peter in 2000. He was the first person I saw at the registration desk, actually. I thought, hmm, he's very nice. Then we just became friends because we worked together and we were colleagues. In 2004, we got together as a couple. We got married quite fast in 2004. I think we were engaged in February, and were married in June of the same year. So yeah, it was pretty fast. I had known him for four years as a friend, so I could bypass all the other dating stuff that people have to go through. He was my friend first; I knew all about him. He seemed to be a very nice man, a very knowledgeable advocate in the field of HIV. I learned a lot from him. And so it was just a smooth transition. Very easy.
Peter McLoyd: One of the things that really attracted me about Kathy, other than her great beauty, was that she was very passionate about her nursing and about the clients and the patients. She was a pediatric nurse at that time and she was very involved in not only the care of the children that she was taking care of, but their families. And so, she would come to me and ask me questions about resources and things like that. I found that very attractive. Then we had an opportunity to actually do some volunteer work in Africa. So we spent a couple of weeks in Kenya. I just really fell in love with Kathy in Kenya -- really working side by side with her as she was; she did triage nursing in a very rural area of Kenya. I literally fell in love with her in Africa and I wrote her a letter from Africa and mailed it to her house back here in the U.S. A long letter, telling her that I didn't want her to be uncomfortable, but this is just how I felt. And she could either ignore the letter or we could talk about it later when we got back to the States. When we were back in the U.S., I kept saying, "Did you get a letter?" And she said, "I had so much mail when I got back, that I haven't even looked at the mail." She was like, "Why are you asking?" I was like, "Oh, just curious." Then one day she came to work and she had this really odd look on her face, and I knew she must have gotten the letter.
Kathy McLoyd: I got the letter. [Laughs] I got the letter. So it just made sense. We talked about it. Yeah, we did. Because there are a lot of questions. We were co-workers. It's hard enough working in the same place and being partners, but if it didn't work out, what would that mean? I knew he was positive, so what would that mean? I had a lot of questions, but the person that I went to for the answers was Peter. We had a long talk. I was a nurse in the field, so I knew what precautions to take and I knew that HIV doesn't define him. He was the person that I wanted to be with and HIV was just, it was just there. You know? It was just something that was just there. Once I learned about it, and was comfortable with it, it didn't bother me. Probably one of the most challenging things is being the caregiver. I thought I had to take care of him all the time, but I think it was one of his providers who said, "He can take care of himself; you can relax a little." I needed to hear that. Going into a relationship as the negative person, plus being a nurse -- I'm a nurturer by trade -- I just felt I had to be there for him and do everything. He probably felt really smothered at one time. But I thought I had to do it. As time went on, I relaxed a lot. I still do for him a lot, I think. I make sure he takes his meds and eats correctly and I'm really trying to get him to stop smoking.
Peter McLoyd: Oh god ...
Kathy McLoyd: Please do not edit that.
Olivia Ford: I will not.
Kathy McLoyd: But, you know, challenges go along with marriage, period. So, it's good.
Peter McLoyd: Yeah, so she's spot on. When we first got together, she wanted to come to all my doctor's appointments and barge in to the appointments.
Kathy McLoyd: I did. I was gently kicked out. It was okay.
Peter McLoyd: But, she is all those things that she says, and there are so many people living with HIV who don't have that type of support. I mean, I never have to worry about my medications or forgetting to order them. I know that if I forget, she's probably already called the pharmacy and ordered them and more often times than not picked them up. They're right at my bedside, so all I have to do is have some water and reach over and take my pills at the end of the day. And I wasn't eating as well. I mean, I thought I was doing a good job taking care of myself, but once we got married, I started eating better. You know, eating meals regularly and actually getting a lot of exercise and things like that. And I'm truly inspired by my wife, because we often talk about how difficult it is to get people engaged in care and I think that she's a model for providers -- for people who are providing HIV services in terms of providing that welcoming environment and not being judgmental and making people want to stay engaged. I'm really inspired by the work that she does.
Kathy McLoyd: I think he's my biggest fan. I'm inspired by what he does. He's Peter McLoyd. Everybody knows him. He's an advocate. I encourage him in what he's doing. I'm proud of what he does. I just want to be the person that supports what he does.
Olivia Ford: Do you want to talk about your experience with stigma in the community and with your families, particularly as a heterosexual couple? It's been challenging to get straight people, heterosexual people, heterosexual men in particular, into the HIV community.
Peter McLoyd: I made a personal decision very early in my diagnosis to be open about my status. First, by disclosing to my family and then by speaking publicly about living with HIV as an African-American, heterosexual man with a history of substance abuse. Because I thought that [it would be worth it] even if it inspired one person, or a couple of people, to get engaged in care if positive or to do whatever they need to do to not become infected. So that's where I was in the marriage. I think Kathy was in a completely different place.
Kathy McLoyd: I was the total opposite. I didn't want anyone to know. It took us years, literally, to tell my family. I started telling last year, because we were going to be in an article in the Tribune and I had to tell before they read the article. It took me a long time, because I didn't want people to treat him differently. But I guess I didn't give credit to my family. I thought that they would treat him differently. They didn't. And surprisingly, everyone that we told said, "Oh, we knew," "It was okay," "We were waiting for you to say it." I'm telling you, it was such a relief. Because I wouldn't be able to do this now with you, if I hadn't said it. They accept Peter, they love him, and that was my baggage that I was carrying, and I shouldn't have. But now I really don't care who knows, because if they know and they don't want to be around us, or they don't want to talk to us or whatever, I don't care. Because it's important for us to feel comfortable where we are.
Peter McLoyd: And we know that there are probably thousands of couples out there like us.
Kathy McLoyd: We're trying to meet them.
Peter McLoyd: They're really struggling, trying to keep the secret. Oftentimes, there are very few resources out there to deal with the negative partner. Those of us living with HIV, we have access to case management and all those different services. But I think that very little is available to assist the negative partner.
Kathy McLoyd: One of our friends asked me yesterday, "Who takes care of you? Who do you talk to?" And it has been in my head since last night. Because I'm thinking, I don't really have anybody. I mean, I talk to Peter, but for someone who is in the position I am, the seronegative person, we really don't have a lot of people to talk to. And so we don't talk. We just continue doing what we do, being the caregiver. We do everything that we're supposed to do and we just don't have anybody to talk to. There's not enough resources out there.
Olivia Ford: What do you think is a possible solution to that?
Kathy McLoyd: Maybe getting a group together. I'm not sure where or how we can do that yet, because that's not my field. I don't know how to start that, so I turn to my resource person. But that's what we need. We need -- just the negative people -- we need groups. We need somewhere where we can go and just talk. We need to vent. We need someone to care for us. We need to care for each other. We need to exchange numbers. We need to be able to call each other in the middle of the night, if we just want someone to listen, because we have a lot of things to say. There are a lot of things to say, being in a relationship like this. There are great things, there are challenging things, but there are times when you just need to talk.
Peter McLoyd: We've been kicking it around in our heads since we came out last year on World AIDS Day in the Chicago Tribune. The article was really well received, but we both work full time and part of my job has morphed into doing more advocacy at the national level so we just haven't had the time to sit down with people and talk about beginning a group for serodiscordant couples, but I think maybe this'll be the motivation for us to come to our organization's leadership and say that we would like to do this. I think it would be well received.
Kathy McLoyd: Yeah, it has to be received well. We run into couples all the time. We don't have anything to say to them about where they can go, because we don't know where to go.
Olivia Ford: Do you have any advice for couples watching this video who had thought that they were the only serodiscordant couple in the world?
Kathy McLoyd: You're not the only one! Try to find a group. Start a group wherever you are. There has to be a group; there has to be somewhere where we can go.
Peter McLoyd: I think, in terms of disclosure and talking to your family and your friends, you have to trust your instincts. You have to give people who you care about, and who you think care about you, the opportunity. It might take a little education, but trust your instincts. If you really feel that these people love you and care about you, then you'll probably be surprised by the type of support that they would offer if you disclose that one of you is living with HIV. I think fear stops us sometimes from even giving the people we love and care about the opportunity to wrap their arms around us and support us. Take the chance. Trust your instincts. You might be surprised.
Kathy McLoyd: We were greatly surprised with the blessing.
Peter McLoyd: I kept telling her. Your family, I love your family. Your family is good people, you need to just talk to them.
This transcript has been lightly edited for clarity.
Olivia Ford is the community manager for TheBody.com and TheBodyPRO.com.