Dealing with any illness can be difficult, but the stigma associated with certain diseases can add additional hardship in the form of judgment and social exclusion. Some illnesses are more heavily stigmatized than others; HIV/AIDS has been particularly stigmatized since the beginning of the epidemic.
We made tremendous progress, but we still have a ways to go, and since we’re dealing with such bedrock values and issues around sexuality, sexual activity, drug use, it’s going to be slow to change some of the remaining amounts of the value issues that lead to stigma. —Ronald Johnson, age 63
I used to say, “I’m a person with AIDS,” and people would back off. —Richard Kearns, age 58, activist and blogger
Additionally, ignorance about how HIV is spread can lead friends, family, and community members to avoid physical and social contact with people who are HIV-positive. Despite fears to the contrary, HIV is not transmitted through casual contact like hugging, shaking hands, or sharing a meal with a person with HIV.
When I went to my support groups, some people would talk about their family, how they rejected them, or when they go to their houses they give them plastic plates and knives and forks, and I said to myself, if I need to go through that I’m gonna find out right now. So I told my brothers and my sisters, and I told my mom, and to my surprise, I didn’t feel that rejection. I guess I was lucky. —Louis Curbelo, age 51
So the elevator opens up and it says “Department of AIDS Services”. A bunch of us got on. Don’t you know that all them people that was on the elevator squeezed to one side. So one girl says, “I should blow on ’em!” —Thomas Jones, age 58
At times, these negative messages can be internalized by people who are living with the virus, resulting in feelings of shame, a decreased sense of self worth, and difficulty reaching out to others for much needed social support. Fear of rejection can lead some to keep their diagnosis to themselves, increasing their sense of isolation. More than half of the HIV-positive people aged 50-65 interviewed for a 2006 study acknowledged practicing “protective silence,” not telling others about their HIV status as a way of managing their fear of HIV-related stigma.1
A lot of people don’t tell you. I guess they’re ashamed. You know, maybe embarrassed that they succumbed to this. Because it has a lot to do with sex, drugs, so they would be associated with both those things. —Dee, age 57
Social stigmatization can take many forms. While people of all ages living with HIV may experience HIV-related stigma, older adults living with the virus may also feel marginalized by ageism in American culture in general and by youth-obsessed segments of the gay community in particular. “Ageism” describes a cluster of negative attitudes about older people, including that they are less sexual, less appealing, and less competent. A 2006 study of older adults with HIV/AIDS found that 68% (all but those in their early 50s) experienced both ageism and HIV-related stigma.2
You don’t feel welcome. When I was 50 or 51, there was comments by some folks that I was too old to represent the gay and lesbian community. As if you turn 40, and you turn straight or something, you know what I mean? I can assure you that didn’t happen. —Larry McKeon, age 61
Health care and social service providers—like everyone else—sometimes make assumptions about people based on personal prejudices that they may not be aware of. Ageism and HIV-related stigma—as well as racism, sexism, and homophobia—can impact relationships between older people and their care providers. Problematic behaviors can include overt discrimination, infantilizing “elderspeak,”3 violation of patient confidentiality, and exclusion of patients from provider/family discussions of patient care, regardless of a patient’s cognitive abilities.4
When we first started getting HIV patients it would be like, “Oh my gosh! So and so is HIV-positive!” Everybody felt like they were seeing the boogie man. I think those sort of attitudes are changing now. We need more nurses, doctors, therapists, to know about HIV and to realize that they are just regular people. —Petra, Physical Therapist
Sending people with HIV to a traditional nursing home has its own challenges – for the resident and for the nursing home.There’s the roommate and their family saying: “I don’t want them using my toilet, I don’t want to share a bathroom – that’s very intimate.” And people are really afraid. —Jeanine Reilly, Nursing Home Administrator