Fear. Living in fear is a terrible way to live. As a person with HIV, living in fear can be a way of life. There are many fears; the first and most obvious being fear of the disease itself. The second biggest fear is that of disclosure; the fear of people finding out that you have HIV.
Why are we so afraid of disclosure? Because of the fear that they will reject us and the fear of judgment. The fear they will treat us differently. The fear of pity. The fear of their grief. The fear of their disappointment. And the fear they will fear us.
Why, with this disease, is "telling people" such a major concern in our lives? I have been attending support groups ever since I first found out I was HIV positive almost ten years ago and back then, as now, it is still the #1 topic of conversation. The first article I ever wrote for this newsletter was on the subject, entitled "To Tell or Not To Tell."
When I started writing articles I made up a last name; Rolands. Roland was my dad's first name, so it felt right. Sawyer is my married name and I'm divorced. Sawyer is my daughter's last name. It is the name I've had legally for 24 years. Pat Rolands was the HIV positive woman who wrote for this newsletter and attended AIDS conferences. Pat Sawyer was a fully functional, healthy woman working in the entertainment industry.
Last year I officially "went public" with my HIV status, or "came out" as a gay friend of mine called it. I wrote a play based on my friend, Linda Luschei and the events in her life when she placed a personal ad disclosing her HIV status. Linda was one of the first HIV+ women in the nation to go public . She did talk shows. There were articles about her in Newsweek and The Los Angeles Times.
The reporter who wrote the article for The Los Angeles Times became a friend of Linda's. When he heard about the play, he wanted to write an article. He asked me how I knew Linda, and I told him that we had met in a support group for HIV+ women. He asked if he could put that in the article, and I took a deep breath and replied "Sure, just don't lead with it." The article ran twice. There it was, in black and white for all the world to see well, at least all the people in Los Angeles.
I remember when Linda Luschei and Ann Copeland went public. I couldn't understand their reasons. Why? What was the point? At that time, all I could see was how much they could lose, I didn't know what could possibly be gained. Perhaps they were doing it for a greater good. A lot of people think that the only way to take away the stigma and stereotype of AIDS is to put a face on it. When it's the face of a woman, well, that shatters the myth that heterosexuals don't get AIDS. But I never agreed that having HIV meant you had to be politically involved. Politics aren't for everybody.
So what is it about HIV that causes such inner conflict, and makes you want to tell everybody and not tell anybody at the same time? People don't necessarily discuss their illnesses with each other. I'm sure if your boss told you that he had hemorrhoids, it would help you to understand him a lot better, but nobody shares that information, except perhaps women after giving birth.
My decision to go public came in several stages. The first was when I was in the hospital with my Crixivan kidney sludge, I thought I was dying. At the same time as I was in the hospital, our cat, Ginsu, was sick with cancer. My boyfriend was spending all his time nursing Ginsu and nursing me. His mom would call everyday and ask him how our cat was doing. She knew about the cat, but didn't know about my illness. I thought, "This is absurd." I realized that sooner or later people would find out. Being sick made me not care anymore. Plus, I knew my boyfriend needed the support of his family. I told him to go ahead and tell them and eventually, he did.
A Double Life
But the two people I was most nervous about were my manicurist and my facialist. My manicurist started to cry and hugged me. She told me she has several HIV positive clients. My facialist came to see my play and raved about it.
I got tired of living a double life. I wanted to live honestly. I haven't worked full-time in over a year. I took a lot of time off to do my play and to travel. I swallow a bowlful of pills everyday. I go to doctors, a lot. I've been hospitalized. HIV has changed my life. I can't change my HIV status. I wish I could, but I can't. I've accepted that.
People ask me if it's a relief now that it's out in the open. I have to say yes. Now everyone who knows me can discuss it with me or with anybody else. When I told my mom, I asked her not to tell my brothers. But of course, she did. She told them not to tell me. It was a stupid secret that we all shared. I'm sure this was as much a burden for them as it was for me. Now no one has to keep my secret for me. Life is much easier. All of my relationships are more honest and more real.
If someone has a problem with my being HIV positive, it really is their problem. I know that I don't present a health risk to anyone. If anything, they present a health risk to me, when they decide to keep functioning in the world with the flu or a cold, which I'll probably get and stay sick with for two or three months.
I haven't lost any friends, or been rejected by any family. The worst thing that happened was I was uninvited to a Passover Seder. The people who were hosting it weren't crazy about me to begin with because I'm a bit older than my boyfriend and I'm not Jewish. I guess the HIV was the last straw. These are people I had only met twice in my life. I was hurt, but not devastated.
I have been living with the knowledge of my HIV for all of the '90s. I have gotten used to it -- not comfortable with it. I'm sure I'll never be comfortable with it. But I have learned to live with it. I've heard people actually call it a "gift." I would never say that. It is the worst thing that has happened to me, and continues to be.
Change Your Life
Changes change your life. Period. And perhaps the greatest good that has come out of this for me is the people I've met that I otherwise would never have known. The people in the AIDS healthcare arena are saints in my eyes. I know I would never do anything around this disease, except perhaps give money to people doing an AIDS walk, if it didn't impact me personally. The women I've met are the best people in the world, those who run our organizations and those of us who need them. There are so many that I would never have known who became my greatest friends.
My greatest fear has already happened. I live with it everyday. It has woven itself into the tapestry of my life. Now I have to try to weave it in artistically, with some dignity and integrity.
I no longer live in constant fear.
Back to the Women Alive Spring 1999 Contents Page.
This article was provided by Women Alive. It is a part of the publication Women Alive Newsletter.