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.