Troubling The Angels

Women Living With Hiv/aids

Patricia A Lather, Christine S Smithies

• Publisher: Routledge
• Year: 2018
• ISBN:
  9780429983054
• Edition: 1
• Topic: Social Sciences
• Subtopic: Gender Studies
• Index: Social Sciences

Educator Patti Lather and psychologist Chris Smithies observed and chronicled support groups for women diagnosed with HIV. Whether black, Latina, poor, or middle class, the women in these groups share the common bond of living with HIV/AIDS, and they describe how it affects their lives in terms full of practical reality and moving poignancy, as they fight the disease, accept, reflect, live and die with and in it.

Story Series One
Life After Diagnosis

1
“I’m Gonna Die from Stress, Not HIV”

Chris: How has HIV changed your life?

Linda B: I have a whole completely different outlook on life than before I was diagnosed. Some days it's good and some days it's bad. I don't look that far into the future anymore. I don't think about retirement. I don't think about getting old. I want to. I want to see the year 2000, but I just don't look that far ahead. I feel cheated. I feel really cheated that there's a possibility that I'm not going to get to see and do what I would normally.

Barb: I think some of what you said is how I feel. I am 26 and there's goals that I want to pursue and things that I feel like I've held back from, like children or law school. At this time it's not my choice. I don't have the energy or the money. I can't quit work because I can't lose my insurance for myself or my husband. I can't move to where my family is because I can't lose my insurance. I don't really get angry about it, but sometimes I feel stuck a lot. But other than that I don't feel angry, you know. It was my choice to have sex without a condom. And I knew what risks I was taking and decided well it won't happen to me. So I don't feel that anyone is to blame for it. I don't really blame myself either. I don't blame anyone.

Chris: What is the worst aspect?

Linda B: Wondering what's going to happen if I have to quit [work], just going through the bullshit you have to go through: where am I going to land? I like where I am now. It's taken me a long time to get where I am. I've had men that were just absolutely anchors on my butt. Now I've finally got to the place where I can enjoy myself and have the things I want, and I know that I don't get to keep them. I'll have to go through a lot of government rhetoric and bullshit just to live. CR and I have talked about this just the last couple of days, it's scary.

Diane: Also it is hard when you are a woman, because with the diagnosis you are either promiscuous, or labeled as not normal.

Patti: What did you mean by label?

Diane: Well, I mean, like people stereotype people who are infected with the virus. I mean we are very stereotyped. We are gay. We are uneducated. We are, you know, sleeping around. I mean it is terrible and I find myself to be very average, normal. I don't want anybody to be labeled. I think that is wrong.

Joanna: I sit on panels sometimes and do speaking engagements and there will always be people sitting in the audience wanting to know how I got infected.

Patti: How does that question make you feel?

Joanna: Well, it depends on my time of the month. And it depends on my general mood. And it depends on the nature of the audience. Sometimes I'll just come out and say, you know it is really just none of your business. Or, it doesn't really matter, the point is I am HIV+ now and I am living with it. And this shouldn't happen to other people and hopefully we can educate. And usually I will tell them that I became infected probably through my husband who died. But that doesn't matter. Because if he had known I wouldn't be positive. He didn't know; I just knew shortly after he knew. Nothing changes. The fact is we all are positive and we all are living with it.

Chris: What's it like to live with such a secret?

Rita: That's why I am thinking about moving even though I feel pretty good right now, my count is up and everything. But just for that reason—to take off the pressure of living with a bunch of women that if one day you just don't feel like getting up, you've been up all night long with night sweats, you've changed the damn bed three times, and you don't want to get up—you don't have to make up a BIG LIE, and a hundred and one other stupid things that go with living with people that don't know.

Geneva: I was at this wedding after I first found out. The photographer was sitting there and telling somebody that she had just bought this apartment, and she said guess what, after I paid my down payment they told me that the guy that lived there had died of AIDS. We had it disinfected, we had a scrub it down party. And it was like, "oh you poor thing, they didn't tell you." And then just the other night, I was at my best friend's house and she knew that I am HIV+, but her mother doesn't know, and they were talking about Magic [Johnson], and her mother was making the same kind of comments, like put them out on an island, and my friend just went crazy, in tears, defending. It was just a really weird position to be in. They got in this big argument.

Linda B: It's a double life, it's an absolute double life. You cannot imagine ever in your whole life what it's like. Somebody has cancer, you go and tell them you have cancer, it's oh you poor thing. You say you have AIDS or you're HIV+ and they can't jump backwards fast enough or far enough.

Chris: What does that feel like?

Linda B: I think it's amusing sometimes. You do a lot of: I wonder what they would say if they really knew about me. Oh if you only knew about me, honey; you think you've got it bad.

Rosemary: When they be talking about it, like me, I work in a place where I'm subject to [germs], I should be more afraid of them than they are of me. I'm so afraid a lot of the time I spray so much Lysol and stuff, somebody come in coughing or whatever. I'm the one trying to jump back; I get real tight and scared that I'm going to catch it. But I can't say anything. Somebody come in there with cuts and whatever, I panic. It's hell trying to be two people. I wish I could go public, I really do. That's what I told the doctor. I wish I could go public so people would know. It would release that tight tension inside of hiding, like you're hiding behind a wall. And if you come out, everybody is going to look at you, that's how I feel inside.

Chris: If you feel any anger at being cheated, where do you direct the anger?

Lori: President Bush.

Linda B: When I get really mad, I get mad at my husband whose philandering gave it to me. But I just get mad in general. Lately I notice I stay mad. That's one of the problems I have to deal with, I have got to figure out some way to unload this. I got into it with my supervisor the other night. She probably carries Lysol in her purse. She asked me what in the world is wrong with you. And I wanted to tell her. Everybody senses a change in me. I'm sick of it. It gets old. It's a big burden too; I don't want this burden anymore. I've got enough to deal with, I don't want to protect anybody else anymore. I think a lot of us feel that way. When we finally all make up our mind to do it, expose ourselves, open the closet door. . . but I just, you know, I just feel absolutely cheated.

Chris: What keeps you going?

Linda B: I keep thinking tomorrow is going to be different. And when it isn't different, that's when it starts getting raggedy. Magic Johnson was hell day.

Robyn: I don't think about it unless I want to date someone. But now I know someone who died. I wonder how I'd afford AZT. With my insurance, I have to pay first and then be reimbursed.

Tina: I told a friend, and it was like I'd given her this big burden. Now that she knows, I can just tell that everything has changed. Now she is trying to take care of me. I don't really want that. I can't tell them at work. That's the worst thing for me, tension around work. And insurance, because I'm not gonna be at this job forever. I go to the doctors and I say to them, "Please don't put down the diagnosis, HIV+," and I know it is going to mess up somewhere, and I won't have any medical insurance. That's a big issue for me. It even makes it hard to go to a counselor because I don't want it in their records. It's all sort of job related.

Carol X: Some people don't have an easy time of knowing my HIV status. Everything becomes "because you're HIV+." Damn it, I have a life and no I don't want to go out with this clown, because he's a clown, not because I have HIV [laughter]. A lot of people will play God with you and say, "She's not smiling today so maybe that's because of HIV."

Patti: So your whole life gets reduced to that one thing.

Carol X: Right.

Rosemary: I think about them trying to take my grandson away, especially as rotten as his mother is. On the job, I've been going to several doctors so it's on my record. In a sneaky way I guess my subconscious really wants to let everyone know so it would be a relief from this strain. I've told several of my friends and some at work and they've been a crutch for me.

Chris: How do you decide who to trust?

Rita: (who moved from a different state where she was "out" as a positive woman) Being out brings you more peace of mind, but it's still hard. I worry about the stigma on my son, especially. I was like a freak when I was out as HIV+. That's part of the reason I moved. I choose very carefully who I tell. You might be able to handle it, but what about your family? You can't really think about you wanting to tell the world. You have to stop and think how this will affect your family.

Chris: Bad days?

Lori: Going through my husband's death and becoming a widow. I didn't expect any of that stuff to happen in my life. Dealing with that was the first thing I had to get over. I still don't think of myself as being sick, I don't really think about it, my healthy denial. But it's made me a better person, not that I would ask for it, but there are some positive things that come out of going through a tragedy. Look at this room full of wonderful people that I'd never have in my life and that's really important to me. But the way I look at this, and I think things are really going to change if I ever get sick, but so far, my saying has always been everybody has a crisis in their lives and this just happens to be mine. I've been really lucky with who I've told, I've been in two relationships since I've been a widow and been infected and they've both worked out really well. I don't know, I think that in some ways, you get back the vibes that you put out. I'm not saying this to tell anybody that they're wrong, but I think what worked for me was to put the expectation on people that I'm giving you a gift, I'm sharing something with you that's really, really important to me and don't take it lightly [tears] and I haven't been let down. I've told everyone except the people in my new job. No one has ever betrayed my trust. The only bad experience I've had has been within the medical community. I don't know, there's some reason why this happened. I don't know why; I'm not angry at my husband for infecting me. I'm not really angry about being infected at all, but I get angry about situations that happen. It's so wearing; which circle are you going to walk today? Are you allowed to be real?

Linda B: You have to lie so much.

Joanna: Hope, that is what keeps us going.

Patti: What does that hope look like?

Joanna: Some days it is very good. You meet someone who has lived for so long and it's like, they did it, I can do it too.

Chris: So survivor stories?

Joanna: Yeah. Sometimes, it's, like, even though I know we don't trust our government and stuff, you know that every time there is a conference, you are busy flipping through those magazines, hoping to hear something good. So, I guess, it is mostly other people who have beaten the odds, gone against the odds.

Tracy: I think the media tends to impact us negatively about it a lot. They put these people on TV who are on their last breath instead of empowering us by saying this person is around still, they are still going, we are getting somewhere. So I think we need to tune out a lot of what the media is talking about, because they need ratings and dying people are going to get a lot of attention.

Linda B: Group is one place you don't have to be a phony. You don't have to ask: Which face do I put on today? "Bond" is inadequate. No word can describe the love you get in this group. My family doesn't understand my forgiveness. I call this "front-pew-itis," selective Christianity. If this is such a Christian country, why do I have to hide?

Rosemary: I'm gonna die from stress, not HIV.

Characteristics of Positive Living

Some while back, the Annals of the New York Academy of Science presented the results of a study of the common attributes of "long term survivors." Long term survivors:

• are able to communicate openly about their concerns
• are sensitive to their bodies' physical and psychological needs
• practice the ability to withdraw from taxing involvements and to nurture themselves
• are assertive and able to say "no"
• have a personalized means of active coping they believe has healing effects
• accept the reality of their diagnoses and refuse to perceive the condition as a "death sentence"
• are altruistically involved with other HIV+ persons
• derived useful information from and maintained supportive contact with a person having the same diagnosis shortly after their own diagnosis
• are actively involved in physical fitness (exercise and dietary work)
• found a new meaning in life as a result of the diagnosis itself
• consider their lives to have great meaning and purpose, which they are focused upon and invested in
• are committed to life in terms of "unfinished business," unmet goals, or as yet unfulfilled experiences and wishes
• are influencing their own health outcome
• are assuming personal responsibility for their health

2
“Living with a Time Bomb”

Chris: What's been helpful to you, what gets in the way, what is a really bad day?

Danielle: Obviously, the HIV virus makes it incredibly difficult, living with fear all the time. Getting sick, having a lot of fatigue, a lot of uncertainty about the future. Should I pursue a Master's degree, should I go for some career move, am I wasting my time?...