See photos from INFECTED and AFFECTED at utne.com/stigma
Stigma is one of the defining characteristics of HIV/AIDS, differentiating it from its biologically-parallel-but-socially-altogether-different retroviral kin. While we can discuss vaccinating children against HPV as we choke down our Cheerios, and we can sit comfortably in front of commercials for herpes drugs, the mere whisper of the word AIDS often causes all polite conversation to cease.
No one is imagining this. In 2007, the Foundation for AIDS Research sponsored a survey of Americans’ attitudes about women living with HIV/AIDS. The survey found that more than half are uncomfortable having an HIV-positive woman as their dentist, doctor, or child care provider. Eighty-seven percent are uncomfortable dating someone who is HIV-positive. One in four was uncomfortable having an HIV-positive woman as a close friend.
It would be one thing if stigma stopped with an attitude, but in a recent survey on POZ’s website, 34 percent of respondents said that fear of stigma has prevented them from seeking care, treatment, and support. Imagine how many people don’t get tested because of stigma. According to the Centers for Disease Control and Prevention, HIV-positive people who are unaware of their infection might account for 54 to 70 percent of all new sexually transmitted HIV infections in the United States. Stigma is a barrier to individual—and public—health.
While much of the impact of HIV-related stigma is quantifiable, however, it is, arguably, those aspects not captured by statistics that prove the most devastating. More than 1,000 people told POZ chilling stories of how stigma negatively affects their lives. Only a small group spoke of how they fight it, standing proud and strong despite society’s desire to keep them down. The following are excerpts from the responses.
When I told a very good friend of mine (we used to camp beside each other every weekend), he cried and said he would stand with me, support me, be there for me. I have never heard from him again, not a call, not even a note or e-mail.
Most, if not all, of my negative experiences have been with, by, or in the presence of medical or dental personnel. . . . They look at me like I’m from outer space, and the quality of their care reflects it.
I am a nurse by profession for 20 years. I told [human resources] the day I found out my HIV status [and] was put on administrative leave immediately and not called back or offered another job. [I had] impeccable credentials.
I had a job working for a well-known law firm in Chicago. When I disclosed my HIV status and my mental illness, they fired me. They said people would be scared to work with me. They said if I sued they would make my life miserable.
I am basically unable to enter into any sort of romantic relationship. [I experience] quite a bit of social isolation—and it’s just so tiresome.
Formerly close friends suddenly lose touch; people don’t want to know you. I usually say, “It’s them, not me,” but it’s me who has to deal with it.
I must either turn a blind eye or tune people out, because I can honestly say in the 20-plus years of being positive, I have never had a bad experience. And I am very open about my status. . . . I have been able to educate others as a straight, white female (after they get over the shock first—folks don’t think people like “me” get HIV/AIDS).
For me it just feels like a very heavy weight I carry all the time. . . . Sometimes it gets very heavy. Rather than jeopardize [your] career, family, friendships, and security, you keep it secret. That’s hard to do when you’ve lived an honest and truthful life.
I dated a man once, several years ago. I kissed him. The next day I decided to share my HIV-positive status with him. He said, “They should mark people like you, so the rest of us can tell.”
I have been asked not to share my water bottle with my 3-year-old nephew.
I have been fortunate in the last 10 years to have not received a negative response from anyone I had to disclose to. However, I am extremely selective about whom I share this info with.
Regan Hofmann is editor in chief of POZ, the magazine of health, life, and HIV, which celebrated its 15-year anniversary last May. This article is from its December 2009 issue. www.poz.com
For more, see a slideshow of more INFECTED and AFFECTED photographs .