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Being Alive
The Proper Etiquette of Naming Your Disease
Lori Levine
February 5, 1992
Being Alive 1992 Feb 5: 13

We have heard HIV+ people being referred to in many ways by the media (who are generally uninformed), by our friends, by well meaning providers (also sometimes uninformed), and by the ALWAYS UNINFORMED general public. Since this topic is not going away quickly, we may as well learn the proper way to refer to "it." So I thought I would begin by pointing out some of the usual misnomers: "People who attract the HIV virus" This is how Magic Johnson, "our hero" and representative on the National Commission on AIDS referred to his peers during a press conference following the Commission's recently televised hearing.

Does he really think this is how we got infected by "attracting" the virus? Isn't anyone going to prompt him before he misinforms the public? "People who have contacted HIV" Sounds so communicative! This was used by Elizabeth Taylor in a televised ceremony as she accepted one of her many humanitarian awards. As long as she keeps raising lotsa bucks for research, it's OK for her to think this is a mode of transmission.

"People who have contracted HIV" Sounds like a Mafia hit to me.

"HIV impacted individuals" This is usually expressed by well meaning social workers and mental health care providers.

"HIV infected people" Yep, that's us the "Pariahs of Society," the "Vectors of Infection." "AIDS Victims" Activists love to hate this one. But in a way I think we are victims. Victims of a phobic, unkinder and not gentler nation.

"People with the HIV virus" So what does the "V" in HIV represent anyway? victim? "People with HIV" Sounds like a corporation the HIV company.

"People with HIV/AIDS" Do we all have both? Are they indistinguishable? The CDC seems to think the difference between HIV and AIDS is based on a certain set of symptoms and/or T--cell counts...

"People with the AIDS virus" (I really hate this one!) Now, we all know this isn't the "AIDS virus" It has been explained so many times that "AIDS" is a series of opportunistic infections that may occur after the virus we do have, "HIV," suppresses the immune system, after years of lying dormant...

"AIDS Babies" This was used by our ignorant President during his desperate State of the Union address, referring to his wife's sensitive care. (He really makes me gag!) "HIV people (as in "She's HIV") Sounds like a nationality, as in "She's Greek." Or perhaps another planet Planet HIV?! In my opinion, the only correct and inoffensive way to refer to owning this virus is as follows: "I am HIV positive."

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