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World AIDS Day

Posted By Margaret K. Peterson, Friday, December 2, 2011
Updated: Saturday, December 17, 2011

AIDS became a part of my life on January 9, 1990, when the man I was not quite in love with yet sat me down and said, "There’s something you need to know.” What I needed to know was that he was HIV-positive. I was stunned. I had heard of HIV and AIDS, of course. Ryan White was still living, and I had read the news accounts of how shamefully he had been treated by too many people, and had resolved that if I ever met anyone with AIDS, I wouldn’t rush screaming from the room. But I really didn’t think it would ever happen. I wasn’t at risk for AIDS, and neither (I naively imagined) was anyone I knew.

I’ve learned a lot since then, starting with the fact that you can’t know just by looking at a person what his or her risk factors are. You also can’t know just by looking what part HIV or AIDS has played in someone’s life. I married the boyfriend with HIV, was widowed a few years later, and since then have felt myself marked both decisively and invisibly by that experience. The years I dwelt in the land of AIDS were the most formative of my life, but where are the marks of that residence? Kaposi’s sarcoma is visible; AIDS widowhood isn’t. My husband used to worry that people would look at his KS and know he had AIDS. No such signs exist for me.

With World AIDS Day approaching, it occurred to me that many of my colleagues at Fairmount Primary Care Center probably had hidden histories with AIDS as well, histories that I would only learn if I asked about them. So I did. A generational divide emerged immediately, between those old enough to remember the plague years, and those for whom AIDS has always been a more or less manageable chronic condition. The mere existence of that younger generation—one for whom AIDS has always been a more or less manageable chronic condition—still takes my breath away. My husband and I used to say we believed that such a day would come. He didn’t live to see it, but I have.

Most of the younger people I spoke with have never had a friend or personal acquaintance who had HIV or AIDS. That’s not to say they aren’t concerned about HIV and AIDS; several of them are regular participants in fund-raising and consciousness-raising events like the AIDS walk, and they recognize HIV and AIDS as serious health problems, particularly among underserved populations like the poor, those with limited access to health care, and racial minorities. But AIDS is not something they encounter within their social circle. AIDS is a disease of the "other.” And in that sense, not much has changed. In my day, the "other” (whether imagined or real) was a gay man; now the "other” is poor and black.

My older colleagues all had stories about people they had known who had died of AIDS, mostly in the early years of the epidemic—friends from college, family friends, in some cases family members. In each story I felt I could hear the echo of a shudder or a sob, echoes borne of memories of this terrible disease, breaking all the rules of modern diseases (they’re supposed to be treatable!), opening the secrets of families and individuals, disrupting relationships, inflicting waves of suffering before finally carrying people off decades before it should have been their turn to sicken and die. Or perhaps the echoes were of my own shuddering sobs, all so long ago and yet still present in the way that a memory is present.

I wish I could be as sanguine about AIDS as the words "manageable chronic condition” suggest. Yes, I know that treatment options for HIV and HIV-related conditions have expanded exponentially in recent years, and that many individuals’ disease can be well-controlled for years on the multi-drug retroviral regimens that now exist. But how many people have access to these therapies and can comply with them? In the U.S., at least, factors (like poverty and addiction) that increase an individual’s risk for HIV are identical with factors that decrease the likelihood that an individual will have access to treatment or will be able to comply with treatment. HIV is not an equal opportunity disease; it is a disease of the disempowered and the vulnerable, and it hits mostly people who are already down.

And the stigma associated with AIDS and HIV, while undoubtedly less than it used to be, is still palpable. I’m struck by the fact that in the three months I’ve been a behavioral health intern at FPCC, no patient has ever disclosed his or her HIV status to me. I know people have HIV; I see it in their charts. But they don’t tell me. Granted, I don’t ask—we screen for tobacco use, substance abuse, depression, anxiety, and PTSD, not for infectious diseases like HIV. But I hear a lot about diabetes and hypertension and high cholesterol, none of which I ask about either. AIDS and HIV remain unspoken, unrevealed, even as my own history with AIDS lies hidden from view.

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