Being diagnosed with HIV can be one of the most traumatic experiences in a person's life. Whether you're 15 or 55, the emotions that come with an HIV diagnosis can be overwhelming -- as can be the millions of questions, small and large, that start shooting through your mind. Questions like: How could this have happened to me? How will my life change? Who should I tell? Will anyone still love me? Will I have to take treatment for the rest of my life?
We've brought together an expert on HIV and mental health and three people, all of whom have been living with HIV for more than 10 years. They'll offer concrete tips for coping with HIV, whether you've just been diagnosed or you've been living with it for years.
Our first guest is Dr. Robert Remien, a prominent HIV researcher and clinical psychologist based in New York City. His research focuses on mental health and support for people with HIV, including mixed-status couples and gay men. Welcome, Dr. Remien!
Larry Bryant is a semi-pro football player turned HIV-positive political activist. A 21-year survivor of HIV, Larry is now the national field organizer for the HIV advocacy group Housing Works in Washington, D.C. Welcome, Larry!
Sherri Lewis lives in Los Angeles and speaks out about HIV in her podcast series "Straight Girl in a Queer World," hosted by Here! TV, a gay television network. She's also a performer and writer who was diagnosed with HIV in 1987. Welcome, Sherri!
Michael McColly is a Chicago-based author, writing instructor and yoga teacher. He recently published his memoir, The After-Death Room: Journey into Spiritual Activism. Michael tested positive for HIV in 1996. Welcome, Michael!
Dr. Remien, I know you've facilitated groups for people who have just been diagnosed. What do you think is the biggest issue that someone who has just been diagnosed deals with? What would you say are the most helpful coping tips you can offer them?
Dr. Robert Remien: I think, across the board, for most people, it's initially the emotional shock, the shock of receiving a diagnosis -- that's whether someone suspected that they already have HIV or not. I think, when the news is made concrete and made real, emotionally there's a shock factor that people deal with.
Ironically, for some people -- but I wouldn't want to sensationalize this -- for some people it's a bit of a relief, if they have been really, really worried and been thinking for so long that they're going to get it, or thought that it was only eventual that they would get it. Some people have talked about their being: "Well, OK, now I know what I'm dealing with." It's been made real.
But I think for the majority of people there is an emotional shock, psychologically. Unfortunately, even though there are effective treatments, and we speak about it as being a chronic disease, it still is true that it's a life-threatening illness, and people initially feel a tremendous loss of hope, feeling like it's the end of the world and their life is going to change in so many ways. This is true on one hand, but people need to realize they can have a normal life back.
I think the most important thing, in terms of coping, is I like to really emphasize with people initially that they need to know that dealing with the diagnosis and coming to terms with it will take time. They need to give themselves time to feel a whole range of feelings. Their emotions will fluctuate over time, especially initially, and they need to know that eventually this HIV diagnosis is going to move from the very front of their brain to the back burner. It never goes away, but it becomes less primary. Over time, it gets integrated into their life, and they start to feel a little bit more normal.
But I would emphasize, in the meantime, what people need to do initially is:
-- Larry Byrant
The caution I would put out there, and often do with people I counsel, is: There's no need to disclose broadly, and to feel like they have got to run out and do everything to take care of this. It's best to think about what would be most helpful for you in the immediate term. Other things will happen over time. But initially, at least it's helpful to be able to speak to one person. Not everyone's a group person. Not everyone wants to talk to everyone about it. And people have a right to be private about this. But it's best they not isolate themselves, and find someone that is supportive to them.
Great advice. Larry, what are your thoughts? What was the biggest issue for you when you were diagnosed?
Larry Bryant: The biggest issue for me when I was diagnosed was: How I was going to die. I was diagnosed in the '80s. Obviously it was a lot different. The climate was a little bit different than to be diagnosed say, 2007, 2008.
But at the time, along with my HIV diagnosis, I was given a date that I was going to die. I was told I had nine years to live. So as an 18-year-old, all of the life plans, all of the long-term planning that you have, sitting in the back of the classroom, writing out: This is what kind of car I'm going to drive, what kind of house I'm going to live in ...
You know, I was playing football at the time. It was my goal to be in the NFL. I was going to marry Halle Berry. All the things that we think we're going to do, you ball it up and just throw it away.
It took a lot of time for me to kind of come to grasp with living beyond today. The best and worst thing that can happen is that you stop and smell the roses, because you start appreciating things. But you don't necessarily look down the road, because you realize there are roses down there.
Fast forward here: I'm going on 22 years positive, and I'm still in the process of trying to grasp the whole long-term view. So just living each day is a must, but sometimes, when you concentrate too much on the day, you kind of forget that, hey, we're going to be here for a while. It's just, the world has been shaken. You try to remain on your feet. You try to make sure the ground doesn't move anymore. And it's difficult. Like the doctor said, each individual kind of processes and copes in very, very different and distinct ways, if at all, since some of us don't.
Sherri, you were diagnosed during the same time period as Larry. You also felt that it was a death sentence, or were told that it was a death sentence at the time. So what were some of your techniques for dealing with it?
Sherri Lewis: I was told over the telephone. When I heard the news, the first thing that happened is, I literally dropped to my knees. Having just witnessed and buried two of my closest friends to AIDS, I knew what it looked like. The pictures that kept running, flashing in front of my eyes were: I was going to die and that's what I was going to look like and when is this going to happen. Sheer terror just ran a hundred miles an hour, speeding through my mind.
And I prayed. I'm not a religious person, especially at that time. But I was in a recovery program for alcohol and drugs, and part of that program was a spiritual connection and prayer. So, I'm fortunate that I hit my knees and I started to pray that God would get me through this. I didn't feel I was getting punished. I knew that God was going to give me the strength to get through it. That is how I coped with every breath I took. It was one breath at a time. I really was horrified.
-- Sherri Lewis
I was also three months away from my wedding date, which is why I asked to be tested. I was in my early 30s and I wanted to get pregnant. I did what we tell so many women of childbearing years to do today: Get tested so you can spare the life of your child from having HIV. And we didn't even have information about women back then. I just knew I didn't want to have an AIDS baby if, by chance, I was positive. I didn't think I was positive, because I had no symptoms.
For me, my HIV diagnosis changed everything. I was terrified that I infected my fiancé. I was terrified he'd leave me at the altar. My fiancé was a single parent. I was afraid I might have killed this boy's only parent.
So how did you cope?
Sherri Lewis: I had a support system in a 12-step fellowship. I went directly to a meeting. So I was lucky. There was a support system in place. I went there and I took direction from what we call in the programs, in the rooms of recovery, a sponsor. She said, "You need to go to a meeting. You need to talk about it and then talk about the solution, how you're not going to pick up a drink or a drug today."
So, that's exactly what I did. I just marched forward. You can imagine; there was a gasp in the air when I said I just tested positive. I was in Boston, Massachusetts. This wasn't something you would say anywhere, let alone there. And you could hear a pin drop, literally. After the meeting, people just hugged me and said, "You're going to be OK." And no doctor could tell me I was going to be OK. But those hands that hugged me, that loved me, that didn't treat me like I was a leper or that any idea I had, like wheat grass or acupuncture, was weird. They all said, "That sounds good."
That's how I coped. I went to meetings, meetings, meetings. I found a phenomenal therapist, who was specializing in people with life-threatening illnesses. Her waiting room was filled with young men with oxygen tanks on their backs. You know, portable oxygen tanks. I was the only woman in the waiting room. They were, obviously, in much worse shape than I was. So the thing that I did after I was diagnosed was kind of a tool: Fake it till you make it. I was going to survive this. I was pissed, and I think that worked for me. How dare this happen to me at this time in my life? How dare this? This is not for me. I'm not signing up for this. I just had the audacity -- it's like [Barack] Obama says: the audacity of hope -- I had that. I felt like this diagnosis is not acceptable, and I will go to any lengths to overcome it. And I did. I mean, from diet to prayer to lifestyle. And helping others, so I didn't think about me 24/7, because I was too afraid to think about me and my future.
-- Michael McColly
How often did you go to support groups?
Sherri Lewis: Every day. Sometimes twice a day.
How long did you continue doing that?
Sherri Lewis: Well, I still do it. It's 22-plus years later.
Not as often, but I have a program of prayer, service and meetings.
Michael, last but not least: Can you share with us, when you were first diagnosed, some of the ways you coped?
Michael McColly: In listening to everyone, I'm both reminding myself of all the things that people told me, and all the emotions that are still kind of bubbling up now. As Dr. Remien mentioned, there are a variety of feelings that you have. I think now, in retrospect, I remember being very nervous about having the right emotions. I think you do go through a lot of different types of emotions and you need to really savor the emotions. I was very angry, as Sherri was and as Larry mentioned, about having a plan in my life, and how that was going to be changed, and why was this going to happen to me.
I think the thing that I want to emphasize is that there is a lot of energy that happens when you find out you're HIV positive. The doctor mentioned shock. The body does respond -- emotionally, psychologically and physiologically. I think it's good to use that energy to start changing, as Sherri mentioned, and start doing things that you know you need to do.
It was a jolt for me to move on with my life. I went after things that I suppose I was sort of dragging my feet on, which is with recovery. I was dealing with addiction problems, with my own writing, and with being more conscious and open about my own sexuality, being a bisexual.
I had to face a lot of things about myself. And it was hard. But I think I began to use the energy. Of course, I used my creativity and I also had been practicing yoga. I really latched on to my spiritual practice, and the community of yoga teachers and friends that I had.
Dr. Robert Remien: I think all these answers are wonderful. What you hear is, you hear commonalities across people's stories. But it's also for listeners to realize that they will have some of their own, unique emotional responses, as was just reinforced by Michael -- that there's a range of feelings that people have and people need to give themselves permission to feel whatever they feel, and to give themselves space and time to feel those feelings. You can also see that people find support in different ways. So people need to think about what works for them.
But the important thing is that they not isolate themselves, and that they do reach out to others and realize, again, as everyone has told in their story, that this is a lifelong thing that people are dealing with. But they do regain hope. The human spirit is amazingly resilient. People need to know that, no matter how they feel in the beginning, they will be able to live with hope and a good quality of life, and just know that that will happen with time. But they need to find the support that is unique to them.
I want to talk about another thing that is very important. That's telling others about your diagnosis. If we would imagine the weeks and the months after testing positive are rough, another rough moment comes when you have to tell others, because you're kind of reliving your diagnosis all over again. So, Dr. Remien, how do you counsel people to tell others? And when do you think is a good time to speak to others about your diagnosis?
Dr. Robert Remien: Well, what you first said is absolutely true, that people do relive their initial HIV diagnosis when they go through disclosures in different contexts, in different places. It brings up all those feelings, even if it's 20 years later.
I think the theme you'll hear from me is, these things happen over time, and they happen in specific contexts. One size does not fit all, and there's no just one rule on disclosure. Disclosure is important so that people aren't isolated. But people will need to balance the cost and benefit of disclosing in certain contexts, and thinking about people's need to know versus their right to know, and their need to know my diagnosis.
So, people need to be given permission to disclose at times, and at times, not to disclose, because it's a private matter. So timing depends on the context, the person, and the environment in which one is disclosing. I think for a lot of people where it's very, very challenging, of course, is in dating and intimacy, and in relationships.
-- Larry Bryant
But I always say that HIV is just one characteristic of a person among many that intimate people get to know over time. So it really depends on the specific circumstance.
With disclosure can come a lot of support and a lot of benefits, but people also need to be aware that they are opening themselves up to vulnerabilities, such as rejection and, unfortunately, discrimination, in some contexts.
I want to ask you, Larry, a little bit about disclosure, because I know you were silent for 20 years before you decided to disclose. And I read something you wrote in which you said, "Silence takes a lot of energy." I thought that was interesting. I was wondering if you could talk about that.
Larry Bryant: It was five years after my initial diagnosis. It was five years before I told anyone. The first person I told was my mom. It was kind of a relief. I don't remember everything about the moment, because I completely let it go. And the energy that it takes to ... Well, it depends on where you are. I mean, we're talking about the stigma and the fear and the ignorance that surrounds this a lot of times, and it comes in different shapes, forms and sizes. The world we live in ... I attended a predominantly black, historically black university. I was playing football at the time. I'm straight, and I was diagnosed at a time when even the CDC [U.S. Centers for Disease Control and Prevention] came out and said it was a gay disease, predominantly in white communities.
So my own absorbing of that: It took energy to do that, itself. Even now, in 2007, about to be 2008, in communities, whether it's me or anyone, disclosing your status automatically opens up the topic of: OK, is he gay? Or, how? Or, what happened? What bad happened? What did he do? What did she do? A lot of that -- before we even disclose, whether it's in a personal setting or, in some cases, where you're doing public speaking in a group setting -- you know, there's still that interior mechanism that's in my head that kind of relays, that kind of goes out ahead of the conversation, and kind of tries to see if I can predict what the reactions of people are going to be.
And being a black man, and being positive, I think, is unique in the sense that being a black man, there are all the other stereotypes and discriminatory types of things that even we place on ourselves. Just, for example, a couple of weeks ago, we all know Sean Taylor, the football player, got shot. I had a discussion with someone and we're thinking, well, a black man, an employed black man, in bed, in his own bed, alone at 2 o'clock in the morning is shot. The first thing that the media and everyone asks is, "What did he do?"
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So that mindset exists in the same way with HIV and AIDS when we're diagnosed. Now the very graphic and public deaths that we see on the front of newspapers and magazines, and heard about back in the 80s and early 90s, don't exist anymore. But what we have are people who die an emotional, a spiritual and a cultural death, long before the physical one comes. Just to stay afloat, just to stay sane, just to stay healthy -- and for the most part, just to stay human -- it takes a lot of energy just to keep that sanity, and try to develop our own coping tools, if we have them, if they're available for us.
Larry, five years after your diagnosis, you told your mom, and then you came out publicly after 20 years. What was that like? And why did you decide to do that?
Larry Bryant: Well, the goal wasn't to necessarily come out publicly. I didn't aspire to be on a magazine, or all these things that I've been on at this point. The ultimate message we want people to have who are newly diagnosed, who are long-term survivors, who are -- and still, again, in this two, almost three, decades into an epidemic -- who are still much more willing at times to die at home, behind locked doors, under their beds, then to live one day as an HIV-positive person, is just that. I don't want to come out. It wasn't a thing of me coming out with a megaphone and saying, "I'm positive; look at me." It was a sense of: Yes, my name is Larry Bryant. I'm HIV positive and this is my message. And this is my life. We, as HIV-positive people, have to be the ones that address the idea of stigma and fear.
You can't legislate anti-stigma. You can't mandate antidiscrimination. I mean, you can. But you can't. Morally, if it's not happening, realistically, it's not going to happen. So we have to be the ones that take a part, take a hold of our own life. We have to swim. We have to swim because the life raft isn't always going to come when you want it to. And it may not always look like what you hope it to look like.
So it was just my way of kind of regaining consciousness. Being flatlined for over 10 years, and kind of having that silence of being scared to speak, being scared to disclose, I had to restart my heart, restart my life, by just being me. And a part of that means being an HIV-positive black man living in America.
Wow. Michael, can you talk a little bit about disclosing, and when you first disclosed to people?
Michael McColly: I just want to say that Larry's story is very inspiring to me. You sound like you have a lot of wisdom. I think that it's a hard journey. I think that sometimes we look back, and we tell the story easily, but it's a painful, step-by-step journey. And trying to be yourself, as Larry said, is really very good advice.
It was hard for me to disclose because I hadn't dealt with my sexual life. So that was kind of a double thing going on. As I'm sure Dr. Remien would agree, when you do disclose to people, family, friends or in a public place, as Larry was talking about, you are addressing people's fears, their deep fears. And in my case, it was fears about sexuality. It was obviously fears about illness, fears about death, fears about stigma.
It is a social disease that we are responding to, as Larry so eloquently said. We have to be conscious that when we are talking to people, there's a lot of projection on us and that can be doubly hard.
Just like people who deal with cancer, diabetes or anything else, when they tell people about it, they have to be prepared for the emotional responses of the people that they tell and that can be a double shock. That can produce anger and sadness. Because here you are going through all that you're going through, and then you're actually feeling physically the kind of fear and emotional response of the person, or the group of people.
I've spoken around the country, with my book, and people come up afterwards and they're crying about the fact that they just found out about cancer, or anything. Because they see you as this person who has gone through a lot.
In some ways, my ego is massaged. But on the other hand, I had to -- and still have to -- cope with all the emotions that come towards me. I'm sure Sherri responds the same way, with performing and being out there, as kind of a symbol.
We have to find ways to keep ourselves sane, like Larry was saying. Because it can be traumatic to sort of embody other people's fears. So, watch out. You have to keep building yourself up, and find ways to keep yourself sane, and not take on the world -- which I have tried a few times.
Dr. Robert Remien: That's such an important point. I think what everyone's saying is that there clearly are benefits when people do disclose over time, in the support that you get. But at the same time, there are times when it can add extra burdens. I think, particularly when people are in the early stages of dealing with this, that they need to give themselves time and think about: Is this supportive of me at this point in time, to share this news with this particular person in my life?
Because, as Michael was just saying, you're left with having to take care of them. And that may be fine when you're a little more stabilized yourself, but initially, that can be a little bit more of a burden.
Sherri Lewis: I was reluctant to be public. I was very happy to stay in a support group. I really did. I just wanted to be with friends and family, go to my doctor, go to my therapist, and cope. A woman was actually following me for several months. She had a grant to do a program about HIV. It was called "Passing It On," and it was a theatrical prevention education theater piece. That happened for a couple of years before I finally said yes, after I asked her, "Where does this go?" She said, "Don't worry. It's like public schools." We went to middle schools and high schools. You know, 8 o'clock in the morning assemblies. I thought, oh, this is great. You're really anonymous.
One day there was a network there. A local television station, unbeknownst to me, was recording the whole thing. Afterwards I said, "You know, I'm not public about this." And she said, "Well, it's so inspiring." But I said, "I'd prefer you not put this on the news."
That night, on the 10 o'clock news in Boston, there it was. It had my face, and her sound bite for two-and-a-half minutes over my story, which wasn't a full story, of course. It had my name: "Sherri L." Like, oh, that's helpful. I was absolutely horrified.
I called my therapist. My therapist called the woman and said, "You're lucky she's not suicidal. I mean, this is a terrible thing." And I really did go back to prayer again. And what is the meaning in this? I thought, maybe God is trying to tell me that it's time to be more public. Because I realized then, you can't be on a public stage and talk about HIV and then say, "But it's not public, you know, for public consumption."
So I ended up working with a writer on The Boston Globe, who said she would tell my story, complete. It hit World AIDS Day, the front page of the Leisure and Art section in The Boston Globe, called "Stage Fright." She did a beautiful job, writing this story. From then on, I met with the mayor in Boston, Tom Menino, and before I knew it, I was really, really out.
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But, Sherri, tell me. Did you have good disclosure stories and bad disclosure stories? I mean, since going public?
Sherri Lewis: Well, public was wonderful. My neighbors were amazing. I lived in the same building for 12 years. I got notes under my door, and flowers, about, "We always knew you were a success. But not this kind of success."
-- Dr. Robert Remien
I found, as the doctor said: In my disclosure, I did not anticipate so much love and embrace. And that was my experience for all those years back East.
Sherri, did you also have good family reactions?
Sherri Lewis: My brother was not too great. My sister-in-law didn't want me in my hometown talking about it, because that's where they lived and they went to school. I didn't find it so great. Really, my support is through my mother, God bless her. And I have a niece that's been very active, in her early school years, with AIDS programs in her public school.
Dr. Remien, do you find that people will tell one relative and not another?
Dr. Robert Remien: Absolutely. Absolutely. I think the message is that people should feel they have permission to do that, as you're hearing in these stories. I think Sherri's given some great examples where it can be supportive, and it could be not so supportive. Unfortunately, even though we're 25 years into the epidemic, we still face that kind of stigma and rejection.
I encourage people, when they are considering disclosure, to think about who they want to tell and why and how it will benefit them, how it might cost them, and to make decisions accordingly. I think it's fine for people to tell certain family members and not others, just like in certain friendship groups.
Just to give an example, I've often heard people talk about an aging parent or grandparent. They say, "Well, I'm not sure what this person's going to do with the information. I don't need this person to know and I don't want to burden them. I'm just going to have to take care of their emotional reactions." So, sometimes they'll say, "You know what? There's no real good reason to tell that particular person."
Larry Bryant: I think it also takes a different level of thought process, when you're going down that list of who should I tell, and why. And who shouldn't I tell, and why. Because I think sometimes who we suspect might be the worst, who would take it the worst, turns out to be someone that is very supportive, and vice versa.
-- Michael McColly
I mean, in all reality, there are people that work in the field, who are trained at working with illness and disease, who sometimes have their own fear and stigmas that exist, that are openly present in just mere discussion. I've talked to people who have moved states because of a comment a nurse, or someone in their waiting room, has given to them, dealing with an HIV-positive person.
I think it takes a special kind of allowance on ourselves to not automatically label who to tell, who not to.
I think it's a very, very personal choice. But I don't think we should shut ourselves off completely. I mean, there are people who are diagnosed positive, who are HIV positive, who feel that they can only date HIV-positive people. That limits their own hopes, their dreams, and everything else beyond that. So I think it just takes an extra level of kind of a thought process, and of acceptance of ourselves, to be able to open up in that sense.
Michael McColly: I want to say, too, that disclosure of HIV may also provide an opportunity to become very close to people. This, of course, takes a lot of emotional energy. But we live in sort of isolation all the time. I mean, we all do, in various ways, in this country. When you open yourself up and become vulnerable in front of others, there's a deep relief among people who see in you the chance to be, as Larry said before, human.
I became closer to my parents and my sisters, and some other friends. Like Larry said, there's sometimes a surprise. There's a friend, or somebody you think will be really supportive, and they're not. Then there'll be another person that you think, "Oh, man, maybe that person ..." Then they turn out to be this deeply connected person to you. So it's a surprise, but it can be a beautiful surprise.
Larry Bryant: I understand and respect the decision-making process that goes towards to whom we disclose to, and who not. But we deny ourselves the opportunity to develop a certain level of self respect and bravery, in just living with the disease and just talking about it, in the context of the "I" statements. It also denies other individuals the opportunity to be educated, to be absorbed, and to understand the complexities that are the life of an HIV-positive person.
Sherri Lewis: It also depends where you are in life. As I was married and I had that part of my life secured, and I had a support system and 12-step fellowship, I was able to disclose. I had a foundation and a world around me that gave me the strength to be able to speak out and be out.
Everything changes. Over 15 years later I still have my support system, but I'm single and I've relocated. So the friends are relatively new, but I have good, solid relationships. But it makes it much more difficult. I'm having to practice not being so up front about HIV, because my therapist will say to me, "Why don't you give him a chance to get to know who you are first?" Because it's not exactly a date maker. And that's been work for me. It's an exercise.
Let's discuss finding love when you have HIV. Larry, can you start? Dating is about disclosure, but it's also about feeling that you deserve to find love. There have been polls of HIV-positive people who have decided to be abstinent because they didn't want to deal with all that comes with dating.
Larry Bryant: Then there are people who decide to be abstinent because of all that comes with AIDS. I think a lot of times, when we're diagnosed, and we see ourselves -- you know, we accept the life, willingly or unwillingly, of being an HIV-positive person -- it kind of knocks us, in our own minds; it kind of knocks us outside of the normal orbit of the dating scene.
I was diagnosed at 18, on account of, I was captain of the football players. I'm in the middle, or the beginning, of my dating life, or whatever, and never really experienced it, because I just automatically subtracted myself from the equation.
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Over time, it's like I'm Haley's Comet. I feel like I should be dating maybe every six or seven years, and then, even then, it's tricky.
Dr. Robert Remien: Where are you now? Are you coming back in?
Larry Bryant: I think I'm in the Aquarian line of the stars; I'm not sure. I think, first of all -- and it's easier said than done -- but we have to understand that dating, in general, is tricky. It takes a kind of special skill of listening and understanding who we are as people, and what do we bring to a relationship.
Like I said: It's easier said than done. But being able to accept ourselves, and knowing what we want as an individual first, knowing who we are as an individual, what our needs are, what our wants are, what our desires are. Then, after that, deciding: What is it that I want?
Because there's no way, positive or negative, that you're going to be able to identify love if you don't know where the map leads, or you don't know what your needs are. You talk about this vulnerability that we put ourselves in, in disclosing, and when you have yourself in a vulnerable state, sometimes you're easily swayed to the first person that gives you a sympathetic hug. That, again, positive or negative, may not always be the best thing.
I think the first part is just understanding who we are as people, where we are, what we need to be, what kind of happiness we need, what kind of likes, who we are and then have a sense of what we want and who we want and if we're truly serious about that relationship. When you have those things in place, I think once you meet someone, it's easier to identify those qualities within that person if we already know what we want. But what we do, I think, whether it's on purpose or whether it's just kind of a self-conscious act, is that we feel like we have to prove ourselves.
We already hope -- as a guy especially -- we already hope that the woman likes us. You go back to in grade school, or in high school, when you have the school dances in the gym, and all the guys are standing up on one side, and all the girls are standing up on the other side, and you got to be that one guy that walks all the way across the gym to ask, and chances are you're going to get disappointed.
It's just like: How? And how fast? How would I look, going back by myself? Those same fears exist now; only that we dress up in this bright red suit, like the ultimate scarlet letter when we go out on a date, and we feel kind of overly self-conscious at times. Because we kind of put out a preemptive strike. Then we may not even give ourselves the best of chances, because we expect to fail, with the added weight of the diagnosis, of the HIV shadow.
Sherri Lewis: Women have the same feelings of rejection. Will he like me? And talk about a scarlet letter. Women are so much more accepting of men who are positive. That's been my experience.
Larry Bryant: Question: You said that in your perspective, women are much easier to accept?
-- Larry Bryant
Sherri Lewis: Women have been, in my experience. My HIV-positive friend has been dating, and been in relationships, all with negative women. They have all been extremely loving, long relationships of several years, even looking at the possibilities of getting pregnant or having a family. I mean, really invested, supportive, loving, caring, nurturing, all of those things. A man does not go that -- in my experience, hasn't gone that distance.
My ex-husband did, but the problem for us was not being able to have children. It was just really painful. Then, with me being an activist, the stigma of coming out and, publicly, people looking at him ... He was in the community, pretty out in the community, not about HIV, but just in general -- and people looking at him and wondering, "Does he have it? Or did he get it from her?" You know.
So that broke our marriage up. And he wasn't positive.
Larry Bryant: I'm not going to say you're wrong, but I know in the black community, in a lot of the communities that I have been a part of, it's much more the other way around.
Because, as a positive man, there is the trust issue. There's still the stereotype of: It's a gay disease, or close to a gay disease. If you're positive, then you're probably gay, if not now, then at one time.
Or, because so many men have been -- especially in the black community, people of color -- HIV is tied very closely to being incarcerated, to having some kind of drug history. There are all of these "what ifs" that come attached to that diagnosis.
Sherri Lewis: Well, that is true. Yes.
-- Dr. Robert Remien
Larry Bryant: So it kind of lends itself to a very, very distinct distrust in who this man really is. Hell, that even goes beyond status, because of the book, a few years ago -- this thing about the down low, how that just really propelled the distrust between sexes, particularly among black couples.
So every woman was looking at her man differently, because this guy wrote a book that has these symbols and you can tell your man is this, and you do this.
It really boils down to it has nothing to do with the whole down low thing; it has nothing to do with any of those specific things. Individually, what it has to do with primarily is the level of trust and understanding, and communication. If you have any breaks in either of those avenues, then you can label it whatever you want to, and it's going to prevent the actual connection of happiness.
Dr. Robert Remien: I think it's important to comment that, what I'm hearing is that the reality is that in different settings, different communities, in different contexts, and across different people, there is a reality of there being stigma and prejudice, and all kinds of, everyone, in their own minds, thinking what this must mean, why this person's HIV positive. That's real, and that's what makes it so challenging for a lot of people, particularly when it comes to dating and finding love.
But I also think -- the way you posed the question, Bonnie, and I think the way Larry started answering -- is that the most important thing is that people need to feel that they have a right to love, a right to sex, a right to being a parent, to even having children, when living with HIV. Everyone has that same right. And while there are challenges to doing it, love is out there for people with HIV.
And also, we can't get into it now, but the whole issue about becoming a parent when one is living with HIV is becoming more and more of a reality for people. So people need to remember. They still have a right to their sexuality, and to their livelihood.
Sherri Lewis: I'm in my 50s, and a lot is different in your 50s -- not just HIV, but a lot of things, not just hormonally, but even dating, and what's available, and who wants to deal with this now.
So that's a huge cofactor. Not just when, what years were you diagnosed, but how old were you when you were diagnosed? Where were you, in terms of your life? And that's made a huge difference for me.
I think a lot of people just diagnosed with HIV need to hear that, even though they feel that their diagnosis will be the hardest part of their journey living with HIV. As a person with HIV, they face other particular challenges like: dating, which we just discussed; starting treatment, which is difficult; getting tired of treatment; and dealing with the constant stigma. Dr. Remien, do you have a list of what people should be aware of, or realize, in their life going forward as an HIV-positive person?
Dr. Robert Remien: I think you're already starting to list the appropriate ones. As we're hearing throughout this conversation, there are lifelong challenges; it's not just dealing with the initial diagnosis. A lot of these things don't go away. But we're also hearing there can be really good quality of life, and love in people's lives.
But there are particular points that I think people find particularly emotionally challenging, such as having physical symptoms, having an illness. Whether the illness be HIV related or not, emotionally the feeling is, wow. What is this? Is this my spiral downward? So there's just that emotional fear whenever anyone gets sick.
The Top Five U.S. Resources for Newly Diagnosed
The Centers for Disease Control and Prevention (CDC) National AIDS Clearinghouse (Information and publication orders):
The Gay and Lesbian National Hotline:
GMHC AIDS Hotline:
AIDS Treatment Data Network:
It's emotionally challenging when people go for their blood work, or they see, all of a sudden, a very high viral load that they didn't have before, or they see a change in their CD4. People shouldn't panic and freak out at just one viral load change, or one CD4 change. You have to look at a pattern over time. But that's an emotionally challenging part.
When people have to initiate medication, they feel like they have entered a new realm of dealing with HIV. Coping with chronic medications in the long term, and the side effects, whether they be the short-term or long-term side effects, there are challenges there. So, constantly taking care of yourself, and adhering to care, and adhering to treatments.
As we have been talking about: Stigma and disclosure and discrimination, those are not just a one-time thing. People might deal with that 20 years into their infection in a new environment, or a new place.
So I think all of these are examples where people may need some extra support, whether that be through a counselor, through a friend, from a group, through their faith. But these things do happen over time.
Larry Bryant: How about adhering to life?
Sherri Lewis: And the rising demographic of aging in HIV?
-- Larry Bryant
Dr. Robert Remien: Yes. Now you've got everything else that goes on with aging, as Sherri was saying.
Sherri Lewis: You know, "I'm so tired of having to deal with ... I was living with HIV for over 22 years. Now I have to deal with bone density, hormone replacement. How does this affect my HIV meds?" There's not a heck of a lot of information about that yet, because we didn't have the luxury of thinking about aging with HIV. The good news today is, we are aging with HIV today. And that's the good news. And it has a whole bunch of other things. But we get to hopefully bring some information with how are we living with this physically, mentally, and emotionally. And hopefully, you have a spiritual connection. Because I know that's been giving me the foundation of support I've needed all these years.
Larry Bryant: Dr. Remien, when you talk about adherence, I mean, it's just adhering to life. We think about the number of people that we have lost to HIV and AIDS, to this epidemic, and we automatically ... we talk about teachers and lawyers and doctors and artists and mothers and brothers and family members and actors, and on, down the line.
We have lost people who have died, who have lost the battle of fighting the disease. But we have also lost a lot of people whose life emotionally ended when their diagnosis came. They stopped teaching. They automatically subtract themselves from their passions, from their dreams.
We have to remind people when they're newly diagnosed -- after going through the initial shock and trauma that inevitably is going to hit you one way or another -- to remember to hold on to any part of your life that you had originally. Your life doesn't change. You're not disqualified from your dreams, and your passions, just because you are diagnosed HIV positive. I think that's one thing that we want to instill in people, whether you've been diagnosed a month ago, or whether you have been positive for over two decades. I think, to remember those dreams and those skills, and don't subtract yourself.
It's hard enough fighting the stigma and discrimination that exists outside of our own beings. But to add another ton and a half of our own weight to that is much more difficult to overcome.
Michael McColly: That's beautifully said. You know, it was after 10 years that I decided to go to several other countries and write a book about how other people in South Africa and India and Thailand, and even here in the United States, have, as Larry said, shut themselves down -- and that, to me, is still terrifying. Because I wrestle with it every day.
But to find whatever engine keeps you going, you just have got to keep reinventing it. But that's what everybody does in life, anyway. You find that out. My mother tells me that all the time, and she's dealing with Alzheimer's now. And there's a new thing: We have got to keep finding the strength somehow.
So, to think that this is a special sort of thing that's only happened to us, you have to keep fighting against that, and by challenging yourself in new ways. You have to wake up each day and go after a new thing. And that can be difficult. But we're all dealing with that in everyday life. And we do have strength. We just have to keep encouraging ourselves.
I'm afraid we're out of time. So, thank you very much, everybody. Thank you, Dr. Remien. Thank you Larry, Sherri and Michael, for taking the time to share your thoughts. I think this will be a very inspiring podcast.
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