What Is HIV Stigma?

Part of the Series Our Stories of Stigma

Sherri Beachfront Lewis
Sherri Beachfront Lewis

What is stigma?

Is it when your daughter dies of AIDS but you don't want to talk about it and her obituary says she died of a rare cancer?

Is it when President Reagan won't say the word AIDS in public, letting thousands die?

Is it when parents won't sign the permission slip for their children to attend school the day a person with HIV will be speaking because they think she will probably encourage them to have sex?

Is it children having to have a permission slip in the first place, just because you'll be walking onto the school?

Is it when a member of your family thinks it's a disgrace that you would come to your hometown high school and talk about HIV?

Is it when you have to see your doctor in the basement of a hospital because that's where they put HIV/AIDS patients even in the year 2000?

Is it when you're afraid to tell your dentist you have HIV because he may not treat you?

Is it when your HIV story goes public in a major newspaper and you're afraid to go to your gym the next morning, fearing your own sweat may prohibit you from using the equipment?

Is it when you are denied an apartment because you have HIV?

Is it when no one will give you a proper burial because you died of AIDS?

Is it when a trained nurse is afraid to draw your blood when you come in to have your t-cells checked because they'd "rather not" be the one to do it?

Is it when no one will pick up an AIDS baby abandoned in a hospital by her addict mother?

Is it when your mother thinks you need to settle for less because you have HIV?

Is it when you think you are less because you have HIV?

Is it when you get rejected in love because you have HIV?

Is it when you aren't allowed into a country because you have HIV?

Is it when any travel is restricted because you have HIV?

Is it when you can't get health insurance because you have HIV?

Is it when health insurance companies get away with canceling your policy when you're three-days late paying, even though you have 30 days by law, just because you have HIV?

Is it when you're denied life insurance because you have HIV?

Is it when HIV isn't considered an equal opportunity disease anyone can get?

Is it when you're denied ANYTHING because you have HIV?

After 30 years of living with HIV, these are some of the stigmas I have come across, some from clients I have counseled and some from personal experience.

I was diagnosed on April 12, 1987, on my 33rd birthday. I was a year and a half clean and sober. The last time I could have been infected with the virus would have been in 1985 when I had unprotected sex with someone in my twelve-step program who months later died of AIDS. It was news in the recovery community and a shock. The AIDS epidemic was front-page news and intravenous drug users were the second highest risk group in '80s. Overlooked was heterosexual transmission, so when my friend, Laurie, went to the hospital emergency room with high fevers and hot rashes all over her body, they never suspected she had AIDS. It was, after all, a gay disease and the stigma was focused first on white gay men and second on intravenous drug users. The use of dirty needles and addict-to-addict sexual transmission all contributed to further stigmatization of these groups.

I was tested for HIV/AIDS when I applied for my marriage license. I wanted to get a clean bill of health before I got pregnant. The doctor called and told me over the phone: "I'm so sorry. Your test results are positive."

I was the first person he had ever said that too. He then asked me if my fiancé and I would like to meet him at the hospital to talk about my HIV and what it all meant.

I said, "yes."

I got off the phone numb, terrified and trembling; I dropped to my knees. I called my fiancé and told him the doctor had called and it was very bad news. He came home immediately. When I told him that my tests came back positive he was devastated. He locked himself in a room, crying and yelling, "How could you do this to her!"

Having heard this through the door, when he pulled himself together I put on my best punk attitude and said, "Don't worry. I'm going to be a pain in your ass for a long time!" I kept my fears and feelings inside, protecting those I loved with my false bravery.

We met the doctor on an AIDS ward at a local Cambridge hospital. I knew where I was; I'd been there before in New York to see my friends dying from AIDS.

We walked down a long corridor and sat in an empty room. I remember glancing at the bare mattress and wondering who had just died and when would that bed be mine? When will I have dementia? Will I lose my mind? Will I lose my eyesight? We sat in three little chairs. I found myself in a bad movie.

I asked the doctor, "How far has this disease progressed?"

He replied, "I don't know."

"What can I do?" I asked.

"Eat well," he said.

"What does that mean? Steak, potatoes and peas? That's what I grew up on?"

He stood up. He shook my hand. He said, "Good luck," and walked out of the room. He had no information. No one did. I was handed a death sentence.

When my fiancé and I went downstairs, he got an AIDS test. We were told it would take three long tortuous weeks for the results. As we walked out of the hospital towards the car, I felt as if I was in slow motion and in each moment. I stopped before we reached the car, looked back over my shoulder at the hospital and took a snapshot in my mind as the voice in my head whispered, "This is the first of a lifetime of hospital visits." I wanted to mark the moment my precious life changed and I became someone living with HIV.

My fiancé tested negative and we were married three months later in spite of his friends who were not supportive. Still in shock, I was afraid I would die before I made it to my wedding. He tried to shelter me from the daily deluge of AIDS news filled with terrifying statistics on the escalating death tolls and no treatments in sight. In our quest to find a miracle cure that, of course, couldn't be found, I was told there would be no treatments in my lifetime.

My first t-cell count was 750, which explained why I had no symptoms and was healthy. I would do this twice a year. That's all there would be to do for many years. I was shuttled into a therapist office where apparently all the other death row HIV/AIDS patients were sent to deal with the trauma and process dying young. I sat in a room with very sick young men, many with their portable oxygen tanks, and felt guilty because I was healthy. One day my therapist asked if I'd be willing to meet with one of her patients, a young housewife and mother who gotten infected through a blood transfusion. She was isolated and didn't want anyone to know except her husband. She had never met anyone with HIV before, and my therapist thought this might help her. I was excited about meeting her.

My therapist and I waited, hoping she would actually show up, which she did. "OMG!" I thought. "She is so normal! She could be my own mother!"

At that moment I realized how I had stigmatized myself. I thought of myself as bad and somewhere in the deep recesses of my being, I felt I deserved this even though I was living a healthy lifestyle.

That was a turning point for me.

The girl from New York City with a purple Mohawk and motorcycle jacket wasn't so bad after all. That rap -- bad disease, bad people -- just wasn't true. I never met with that woman again. I knew only that she was very sick and had been diagnosed with AIDS. She was genuinely happy to meet another woman with HIV. I can only hope that she got as much out of meeting me as I did meeting her.

I reluctantly became an HIV/AIDS activist. When a dying friend couldn't make his speaking engagement and asked whether I would be willing to cover for him, I said yes. It would be the first of many: one hundred and fifty a year for the next twelve years.

In those years, notices were sent out to parents in advance, informing them that there would be a person with AIDS coming to speak at the school, and they would need to sign a permission slip for their children to attend.

I rarely got a negative attitude or question from students. Sadly, I got more stigma from my own family, who weren't happy when I went to speak at my former high school. The more I was out about living with HIV and teaching prevention, the better I felt.

On several occasions after speaking, someone would whisper into my ear and tell me that they were HIV positive too. I remember a sixteen-year-old girl who had gotten infected the first time she had sex with an older boy from her school. She didn't tell anyone for fear she wouldn't be able to go to the prom and her parents would be too upset. She went to get an HIV test after she heard a rumor that he had AIDS. I encouraged her to see a doctor and gave her my number, but she never contacted me. So many years later, I'd like to think she's alive, healthy and living the life she wants.

I have hundreds of letters and cards from kids of all ages, file cabinets filled with drawings and letters from students who are so precious to me. They were the children I couldn't have who filled the hole in my heart. Those first twelve years of living with HIV were the worst of times and the best of times.

It's been three decades since those early experiences. In 1997, when effective HIV treatments came on board, lives were saved from the brink of death. But complacency set in and changed the public conversation about HIV/AIDS to, "There's a cure for AIDS now isn't there? People don't die from AIDS anymore."

Silence = Death. -- Act Up New York.

Sherri Beachfront Lewis was the lead singer of the 80s pop band GET WET and the host of Straight Girl In A Queer World. She is also a blogger for TheBody.com.