Adjusting to Life with HIV/AIDS Today we look at the psychological dimensions of HIV/AIDS — from the trauma of receiving the news to the side effects brought on by AIDS medications. Farai Chideya talks with Carla Bailey, co-chair of the Los Angeles County Commission on HIV; Regan Hoffmann, editor-in-chief of POZ magazine; and psychiatrist Dr. Michelle Clark.
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Adjusting to Life with HIV/AIDS

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Adjusting to Life with HIV/AIDS

Adjusting to Life with HIV/AIDS

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I'm Farai Chideya, and this is NEWS AND NOTES.

If you were diagnosed with HIV or AIDS, you'd face new physical realities, new medications for one, and you might also question how your life would unfold. Would you have a long life on the new medical regimens? What would your friends and family think if you told them?

We continue our series on mental health with a look at the psychological dimensions of HIV and AIDS, from the trauma of receiving the news to the side effects brought on by AIDS medications.

Carla Bailey is co-chair of the Los Angeles County Commission on HIV. She's waded through many of the mental setbacks that come with being HIV positive. She's been living with the disease for 12 years.

And Regan Hofmann has also been living with HIV for 12 years. She's the editor-in-chief of POZ magazine. That's a magazine for people living with and around HIV. Welcome, ladies.

Ms. CARLA BAILEY (Co-chair, Los Angeles County Commission on HIV): Thank you.

Ms. REGAN HOFMANN (Editor-in-chief, POZ Magazine): Thank you.

CHIDEYA: So let's start with you, Carla. The last time you were on the show with us, you talked a little bit about the depression that hit you after you were diagnosed. Remind us a little bit about that story, how you found out and, you know, kind of how you kept to yourself.

Ms. BAILEY: Well, it took me a minute, but I had a partner that died, hadn't been to a doctor in years. I have an older sister that's a medical professional, and through a few years, I lost friends, I lost my significant other's mother to cancer. There was a lot of stuff going on, and then I lost him and then my mother. And all this happened within about seven months.

I continued to work because I had kids, one in college, two in high school. And it was my job to make sure they got their educations, and so I went - I worked, and that's all I did. That was my life, my kids and my job.

I was in real estate, and I was making money, and we were living pretty well, but my sister is my sister, and she's the one that always, there's five girls, you guys get your breast exams. Have you had your pap smears? Blah, blah, you know, that kind of thing. And I've always had a - didn't want to go to the doctor.

But for three years, she pushed and prodded, and finally she made an appointment for me, and I went in. She said you need a physical. You know, you've lost so many people, and you look so depressed, and you don't do anything but work.

So to shut her up, I'm like no problem. I'm going to this doctor just so you can be quiet. While I'm there, I was asked about an HIV test. I took the test, and I had to come back for results. Where they sent me didn't look like the place where I initially started, and when I walked to the door, I stopped outside the door and looked up to make sure I was in the right place because the people inside looked sick, in wheelchairs, some on crutches, thin, the wasting syndrome, the whole thing. And I'm like oh my God.

So the lady that was sitting inside, the receptionist, motioned me to come in. I walk in, I said I think I'm in the wrong place, and she asked me my name. She said no, you're in the right place. Have a seat, the doctor will be with you.

I get into this room with this doctor, and he starts asking me questions. And finally, I just said look, you're asking me too many questions. What's going on? What did you find? And he said you have full-blown AIDS. You have 12 T-cells and 1.1 million copies of the virus. That was the last thing I heard.

I don't know what else he said to me after that. There were so many things going through my head, and I was so afraid and so scared and not knowing what to do. I ended up going home, and later that evening, I called my sister, and I'm like I need to talk to you. You need to come over. And I told her what was going on with me. It was hard just to even talk to her, to tell her.

Her reaction was basically like mine, but she's a health care professional. She's like okay, we've got to take care of this. Her friend is my doctor and is still my doctor. He didn't start out being my doctor, but he told her he'd take care of me.

CHIDEYA: And you look great, by the way. You're sitting here with me right now in a radiant orange outfit, and I mean, would you have thought at that time that you would be in a position not just to be healthy but also to be helping other people?

Ms. BAILEY: No, I thought I was going to die. As a matter of fact, I remember praying for it.

CHIDEYA: Praying to die?

Ms. BAILEY: I prayed to God: Please let me die, and not like these other people that I'm watching go through this long, drawn-out illness that just - it makes you - it breaks your heart. And I was like, I thought about my kids, and I'm from a family of eight. You know, there's eight of us, and I'm like oh my God, my siblings.

Then it came down to how do you tell the rest of your family? Because we lost our mother. It was just us. So we decided we'd have a barbecue, which is where we get news - pregnancies and whatever else is going on in the family, and it was kind of somber. As a matter of fact, it was really somber.

My sisters were okay because these women go to church. My brothers - I'd never seen my brothers cry like that, and it's like what are we going to do? And I could feel one of them, when he grabbed me and hugged me, he says what are we going to do? I'm like we live until we die.

CHIDEYA: Let me get Regan in here. You've been HIV positive for the same amount of time, roughly, as Carla, and you, too, also have moved into a position where you're helping other people. Your magazine creates a sense of community, in fact. What do you hear from the community about this initial blow when you first find out that you're positive?

Ms. HOFMANN: Well you know, it's really different today than it was when I was first diagnosed. I had a very similar reaction when they told me. My doctor had never diagnosed a woman before. I think he was as shocked as I was, in 1996. You know, neither of us knew what to say.

Today, people fortunately are often diagnosed by someone who understands the disease a bit better, and so the news is less dire, and of course when people are diagnosed today, there are a lot of medical options for them.

So it's not an instant death sentence, but I think in a way, we've almost come too far in convincing people that AIDS is a chronic, manageable condition because, you know, as we're talking about this, it's a very difficult disease to withstand physically, as well as emotionally.

And it's a double-edged sword. We want people not to fear AIDS or people living with AIDS, but we also don't want people to continue to get this disease that's preventable.

CHIDEYA: Sometimes, you know, we see statistics that say that, you know, infection rates are up among certain groups of younger people, or certainly among black women, and you're thinking that in a way, people don't take the disease seriously? Is that what I'm hearing?

Ms. HOFMANN: People don't think that we have an AIDS epidemic in America. They think it's an African problem, an Indian problem. I mean, we have more cases and more people living with HIV than ever before on the planet, especially in the United States.

The odds of you getting AIDS today are higher, and women are continuing, in particular, to be diagnosed with AIDS as opposed to just, you know, being identified as HIV positive, and there's no reason for this. People should be getting tested. Doctors should be looking for the symptoms. I think there's complacency.

I think there's - you know, we've done a great job educating people, raising awareness about AIDS, but I think the missing link is that people don't believe it can really happen to them, and part of that's because people living with HIV are afraid to come forward because of the stigma.

So I know thousands of women like myself and Carla, and you know, they're just living in isolation, and they're terrified, and if they're lucky enough to have families that are supportive or loved ones, that's great. But they're not out in the public eye, so nobody believes that it can happen to them.

That's what happened to me. I mean, I - in the beginning of the '80s, I thought - I was terrified of HIV, but by the mid-'90s, I was back to being concerned that I was going to get pregnant and that was the worst thing that could happen to me, until of course this did.

CHIDEYA: I want to bring in Dr. Michelle Clark. She's the president of the Golden State Medical Association and a psychiatrist who works with the psychological dimensions of HIV and AIDS. Dr. Clark, we have heard just a little bit about more of the revelation period, but what else happens once you are diagnosed with HIV among your patients? After that initial shock, what other sorts of issues come up?

Dr. MICHELLE CLARK (President, Golden State Medical Association): The many issues that come up with people living with HIV are first the management of recognizing and accepting what all is involved in living with HIV.

This is separate and distinct from any ongoing mental health problems that they may have, and I want to emphasize that being HIV positive does not necessarily mean that you have psychological difficulty, because I don't want it to be misconstrued that mental health issues are part of the diagnosis.

But it is a fact of life that people have to adjust with any chronic illness, HIV is now a chronic illness as many other illnesses that we have to live with in our community: diabetes, hypertension, et cetera. The problem with HIV is the uniqueness of this particular virus, its mutability, the challenges in remaining with the protocol so as not to become resistant. All of these things are unique and make it even more difficult to manage the illness.

So it's very, very important that people can see through the shock and dismay and other emotional feelings that they go through similar to any grief reaction: denial, anger, et cetera. It's important that they're able to see through that to the important information that they need to get in order to live successfully with the disease.

One young man who was on earlier - I'm sorry, I didn't come in in time to get everybody's name - was saying that after his numbers were announced to him, he didn't hear anything else, and that is so commonly the case. The important thing is to assist folks in hearing through that.

The way to do that, of course, is to provide them with written information that they can pass on to loved ones, significant others, who can help them absorb all of the information that needs to be absorbed and to support them through all of the emotional changes that they may go through. There is no one way that people do it. Everyone is unique, everyone is different, and so everyone handles things differently.

CHIDEYA: That was Carla who you heard speaking before, and unfortunately, we don't have too much time. I mean, this is a topic that is so important, but what I do want to do in our closing minutes is talk a little bit about strategies that you have for dealing with things when they're not going right. I'm going to start with you, Regan. What I mean is either when you feel down or whether you feel stigmatized by other people, what kind of resources, emotional resources, do you go to?

Ms. HOFMANN: I'm lucky to have an incredible family, and I can talk to them, an I would encourage anybody to confide in people about HIV. People can actually, armed with the right information, get their heads around this disease, and they are happy to help you.

So I call my friends, but I've done a pretty good job educating them and going out on a limb, and in response, I've been specific about telling them what I need. I've said to them: Please ask me how I feel. You know, don't be afraid to talk to me about AIDS. Don't be afraid to bring it up. Think about this as if I had breast cancer or, you know, another condition. Talk to me.

And by giving them the green light to do that, they've done that, and that has made me feel so normal, and then I think just in general, having people, my friends and family, know that, like you know, just hugging me, touching me, you know, sharing my soda or dipping their French fries in my ketchup, as my younger sister did the first day that I told her I had HIV, treating me like I'm normal is really just an act of solidarity, and it has helped me feel normal and non-infectious, which is a great health-builder for me.

So I think just being open with me about it, taking the responsibility on themselves to educate themselves, and then being and acting comfortable around me has been extremely helpful.

CHIDEYA: All right, we have time for just a short comment from you, Carla. Where do you go when you're feeling spiritually depleted?

Ms. BAILEY: Well, I'm a spiritual person, so I read my Bible a lot. That's where I get a lot of comfort most of the time, but I have a great, like Regan, a support base of family and friends, and then what I tell people is I'm not the disease. I'm a person living with a disease. If I had a choice, it would be not to have it. So my choice is for everybody out there that's not infected is for them not to become infected. Get an HIV screening. Keep your health straight.

CHIDEYA: All right, thank you so much. We've been talking with Regan Hofmann, editor-in-chief of POZ magazine. She joined us from our New York studios. Psychologist - psychiatrist Dr. Michelle Clark. She specializes in the psychological dimensions of HIV and AIDS. And Carla Bailey, a single mother living with HIV, also co-chair of the L.A. County Commission on HIV.

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