This Month in HIV: Tips and Tricks for Coping With HIV/AIDS
A Psychologist and Three HIV-Positive People Share Their Wisdom
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:
"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. ... 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. ... 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."
-- 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.
"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."
-- 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.
"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 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."
-- 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.
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This article was provided by TheBody. It is a part of the publication This Month in HIV.
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