In their own words 

The Silent Voices of HIV/AIDS speak out

As of December 2003, there were 549 known cases of HIV/AIDS in Montana, 80 of those in Missoula county alone. HIV/AIDS is intimately entwined with the local and global issues of poverty, health care and education. How we choose to treat this pandemic in the years to come, at home and abroad, will tell us much about ourselves. Locally, how we decide to treat our friends and neighbors sick with the disease will be even more revealing.

What follows are excerpts from interviews with five heterosexual HIV-positive women living in the Missoula area. The women range in age from 20 to 65, are single, married, living with or without children. Their words have been transcribed from tape-recorded interviews conducted last August and from written statements provided more recently. For reasons of privacy, names have not been used and identifying details confused.

What one quickly learns in speaking with these women is that the social stigma associated with the disease is almost as crippling as the infection itself. They fear the judgment of friends and strangers, the potential loss of jobs, the possible repercussions against their children. On top of this, medications are expensive, with side effects ranging from difficult to debilitating, while access to mental health care is almost nonexistent. (Missoula runs the only support group for HIV-positive women in the entire state.) Left to juggle job, family and home, taking care of themselves often comes last.

To date there is no known cure for AIDS, yet as public opinion based on fact, not fear, slowly swings in the direction of compassion, these women find hope. Bravely they mix it with the life-lengthening pills they take each day, and swallow hard. The five women interviewed below are calling themselves The Silent Voices of HIV/AIDS, and this is some of what they have to say:

“I want to scream at people sometimes, ‘You wouldn’t treat me like this if you knew I had HIV.’ But my fear is they would treat me worse.”

“I choose very carefully who to tell. Even people in my own family don’t know. I only want those who will be encouraging, helpful and nonjudgmental to know. I avoid any negative energy. I need every bit of my strength to live.”

“If someone I didn’t trust asked me point blank if I had HIV I would lie. I need to survive and that is more important than being truthful.”

“One main reason I don’t tell people I am HIV-positive is because they most likely will ask, ‘How did you get it?’ And that is where the judgment begins. No other terminal illness carries that much potential judgment.”

“When I first found out, a tidal wave of panic would greet me every morning. ‘How long will I live? Who will reject or support me? How can I pay for it? Will I lose everything I worked my whole life for? What should I be doing? What kind of job can I get? How will I protect my assets? Can I travel? Which friends will stick to me? Should I give all my money to a friend or relative in case I go down‚ and need to go on disability? Will I have to sell my house? Will I lose my job if they find out? Will the people that process my insurance honor the [confidentiality] rules or tell everyone at work? Will I age prematurely? Will a man ever want me?’”

“With HIV you start feeling like a criminal, that your body can hurt people and poison people, and it’s such a change of body image when you feel like your sexuality is a danger.”

“I used to like to dance. Now I can’t. It’s like my spirit was robbed. I feel like a fake. Like if they knew I was HIV-positive they would hate me for dancing. Like false advertising. Like saying, ‘Wow, look how sexy I am. I can kill you.’”

“It seems every article about HIV includes drugs and alcohol and mental illness. I got HIV because I was angry and high on rebellion, not because of those things. Disappointment, angry, high on rebellion and needing to connect, to belong, to create something of my own, be important, to mean something to somebody who needed me. Let’s teach young women how to be fulfilled in life.”

“It’s a part of me now, I know that, a part of who I am, and I try and live a normal life.” “I feel ashamed and isolated a lot of the time.”

“If there is one thing I could tell the public, especially the people living in this area is not to be afraid and to be friendlier. Living with HIV you tend to isolate.”

“We are your neighbors, classmates, co-workers.”

“We have no reason to hide; we are no different than people who don’t have this disease.”

“We do a lot of hiding when we shouldn’t have to. I guess that is what bothers me the most.”

“Being a permanent patient like I am I don’t think I’ll ever lose sight of what it means when someone says their tummy hurts, or they don’t feel like doing something, or don’t have the energy to get up that day. I feel that. I feel it all the time. I’ve been to that place.”

“I don’t think much about the future, I just try and think about what’s going on day to day, but I always wonder ‘why me?’ Why couldn’t it have been that other girl who gets around nonstop? Why couldn’t it have been her? Why did it have to be me?”

“I don’t have any long-term goals. I don’t really make them. I can’t promise my daughter anything. I won’t. Not even next week, tomorrow, the day after. I don’t make promises so I tend not to make long-term goals either.”

“I have one thing to say to the general public: Educate yourself, and BE SAFE.”

“There are a lot of us out here, and none of us did anything wrong to get here. Just normal human behavior.”

“If people keep ignoring this issue, we will just keep growing in number.”

“In the end I just don’t want to use up my energy thinking about what if, what if, what if. This is reality and this is apparently where I’m supposed to be right now. So the question becomes how much good can I do from this position?”

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