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New Rules: HIV Social Etiquette

February 25, 2014

A few years ago, I did some work volunteering for a project detailing the history of LGBT America. We had some fairly intense training sessions prior to launch, to make sure all volunteers were on the same page, especially where "sensitivity" and "political correctness" were concerned.

We represented a wide cross-section of America, and the Boomers among us were very happy when I shared a correction to a typo in our training text:

We don't say 'sexual preference' anymore. This implies choice. Who chooses to be a stigmatized minority? Nowadays 'sexual orientation' is preferred.

I mention the Boomers' appreciation because no one wants to attempt to sound knowledgeable while making others believe they just rode into town on the back of a turnip truck.

That being said, in the 2 months since my diagnosis, I've picked up on some new "Rules of Politeness" where HIV in 2014 are concerned:

  1. Let's just get the most basic one out of the way: DO NOT conflate "HIV" and "AIDS" terminology; this is directed mostly at the remaining Baby Boomers who maybe missed the Die-Off and continue to confuse the two.

    Something I learned from early perusal of HIV forums: "AIDS" is when your Tcell count falls below 200. Due to genetics or other factors, there ARE Positive people in 2014 whose Tcell counts loiter just under 200. Meaning: they have AIDS in 2014. And I would imagine they're quite sensitive about it. So let's just use "HIV" in all cases, not "AIDS."

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  3. Sort of similar, and I'm including it because I got schooled on my own ignorance recently. Nobody dies of AIDS, the appropriate thing to say is "died of AIDS-related complications."
  4. This one I learned in the past 2 years, before diagnosis, via some quirky brave souls on Grindr/Scruff: never, ever say "clean" to reflect your HIV status. Inference there being: I'm dirty? Having some bromo with a topless selfie in the mirror say he's "clean" only feeds my growing complex that gay men revel in their own ignorance more with each passing day. I'd also argue if you're on a hookup site, you're not "clean" ...
  5. Another nugget absorbed from brave souls on slutty apps: if you're gonna put the last date you got HIV-tested, maybe put your Herpes and Hepatitii statuses up, too (et al.)? In HIV forums, I've seen that some people will use their last lab results as their e-signature. I would like to see "clean" guys start indicating how and when, exactly, that they're "clean."
  6. This rule is my own personal addition: Telling a friend or loved one your status usually results in a sense of shock or discomfort out of them. In order to deflect or minimize, they tend to respond with the first thing that comes to mind:
    How did it happen?

    You should know that this is probably the most intensely personal question you could ask someone with HIV. It's a normal, human, kneejerk response ... but don't be surprised if it's met with a haughty smile and a "that's not really your concern."

    Truth is, this can take a long time to work through. There are layers to working through a diagnosis, and it can take years to piece together exactly when; I would wager there are some Positive people out there who will NEVER know. Putting them on the spot so that they reply with, "I don't really know" is only going to add to the intense "dirty/worthless" emotions the newly-diagnosed might be struggling with.

  7. Finally, a topic I had considered doing an entire post on: Are AIDS jokes funny?

    The only template I have to go by here is racist jokes.

    I asked a black friend once, "Black Friend, do you laugh at racist jokes?" His response: "Yes, because otherwise the racists win."

    This is not a simple concept of humor to absorb. The JOKE here is the ignorance. Those who constructively laugh at racist jokes are actually laughing at the racists. It's a fine line, though, because that takes an awfully "high brow" to comprehend; low-brow rednecks laugh at racist jokes for an entirely different reason.

    I find South Park's skewering of AIDS hilarious (literally, their Jimmy Buffett parody song "AIDS Burger In Paradise" is infectious), but then my sense of humor has always been a bit off. Myself personally, though I DO know those who have died of AIDS, I was not close to them, nor was around in their final days.

    My personal "humor boundary" ends with Alzheimers. It's not funny, and it's probably the saddest way a human can decline. Because you're not even a part of it -- it's inflicted upon your loved ones, as you grow more and more oblivious.

    So. I would not find Alzheimers jokes funny. But ... maybe there are those out there who would, and also find AIDS jokes repugnant? It's entirely possible. Therefore, re: AIDS humor, you gotta examine your audience first; an intelligent laugh isn't always received properly.

This is a living document; I intend to update as I learn more!

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See Also
Day One With HIV: Finding Out Your Status, in Your Own Words
TheBody.com's HIV/AIDS Resource Center for the Newly Diagnosed
More "Just Diagnosed" Stories

Reader Comments:

Comment by: Robert (Memphis) Wed., May. 14, 2014 at 12:05 pm EDT
I am a board member and advocate for our local HIV/AIDS resource center, Friends For Life, I am also a 31 year survivor of AIDS. I use AIDS because; my Tcells have hovered above and below that mystical 200 line ever since I was diagnosed, and it seems to open a more in depth discussion on the subject which gives me a chance to educate. Unfortunately, I find that many people who think HIV is a completely treatable illness and don't understand that thousands are still dying everyday from AIDS.
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Comment by: Paul G. (Vancouver Island, BC) Sun., May. 11, 2014 at 8:21 am EDT
Dear Ben B.

For a self-proclaimed Miss Manners, some of your comments are in poor taste, if not downright offensive.

I had a hard time getting past your first "rule of politeness." Take a fresh look at what you said: "This is directed at the remaining Baby Boomers who maybe missed the Die-Off and continue to confuse the few." The Die-Off? Are you serious? Ditto for "the remaining Baby Boomers."

If you want to write (and hope to be appreciated), please take a little care not to offend -- especially when that's supposed to be the topic of your article.

Thanks.
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Replies to this comment:
Comment by: Ben (Chicago) Tue., May. 27, 2014 at 3:16 pm EDT
Yes, I am quite serious with the phrase "Die-Off."
What is your issue?
For someone urging me to be careful not to offend, you sure haven't explained your point(s) very well.


Comment by: Louis (Harlem NYC) Thu., May. 8, 2014 at 11:18 am EDT
I am one of those guys that expressed negative opinions about hiv meds and the whole medical field.1986 to 2002.in the 80,s hiv/aids was a new thing nobodyknew what they was doing,so people like myself only believe in what we saw.Today is a new ball game .They know what they doing,and see it

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Comment by: Pono (Hawaii ) Wed., May. 7, 2014 at 7:13 pm EDT
In the article you say it's no longer appropriate to say that people die of aids, then you say you know people who have ( near the end). Not sure if I'm just reading it wrong. Your writing is kind of high brow, so I may have misunderstood.
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Comment by: Edwin Blessing (Dallas TX) Tue., May. 6, 2014 at 9:40 pm EDT
Lets see Tosh who haven't you insulted.
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Comment by: Scott (Allentown, PA) Mon., May. 5, 2014 at 9:37 pm EDT
AIDS/HIV really the question is will you fight or be a victim the Meds we have now and the resources here in the US we need to step back and be greatful. As far has humor I am poz my wife is not and we both find this humor foolish. We don't see jokes about HEP or cancer why are we subject to special status. I am not homosexual and don't really care who is but is seems that is the root of the jokes. Somehow we did this to ourselves. I don't like the jokes but at least people are taking about it. And because it's at the point where its treatable they can joke. In the US people are not dieing like they once were so Somehow we are free game.
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Comment by: Greg Freeman (St Kilda Australia ) Mon., May. 5, 2014 at 9:13 pm EDT
Its, been a while since, I had a good belly laugh... Nice work
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Comment by: Charles (Macon, GA) Sat., May. 3, 2014 at 2:50 am EDT
Are AIDS jokes funny? Yes, and no. Like every other joke told there is usually a butt of the joke somewhere out there. Often, it's me. Does that bother me? Not in the least when the joke being told is meant to be humorous. If you can't laugh at yourself who can you laugh at?

The problem being any joke told by the wrong person, to the wrong audience, at the wrong time can be very not funny. Jokes regarding sensitive subjects (a medical condition/ethnicity/sexual orientation/etc) can easily be taken the wrong way and construed as hateful rather than funny.

South Park got it right. It's in the timing and the delivery. If the joke comes from someone who has a history of being hateful for any reason the joke is going to be more closely scrutinized and probably labeled as more hate from utterance.

Like anything else in the world you can tell the same AIDS joke to 2 people sitting side-by-side, They can have the same medical conditions. One will double over in laughter. Their friend will boo and hiss the comedian. If you think it's funny laugh. If you think it's not funny try to realize why it isn't and if necessary take corrective action. Like pulling those panties out of your crack....

As for topic #5 - I tell them if they have to ask they weren't invited to the party and don't get the details afterwards....
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Comment by: Ben Tue., May. 13, 2014 at 2:14 pm EDT
LOVE #5.

The other thing from that South Park episode I'm dealing with: AIDS doesn't get top news billing anymore.
Guys younger than me have basically forgotten the Die-Off. They even diminish HIV.
Guys my age and older? They get it. They lived through it.


Comment by: more rules (boston, ma) Wed., Apr. 30, 2014 at 6:27 pm EDT
Once you have been diagnosed with AIDS, you are forever branded, regardless of your current t-cell count. Until a cure is found and you have been diagnosed as cured, you have AIDS. And of course you are HIV-positive. So don't encourage labels. A diagnosis is not a label.
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Comment by: Dave (Virginia Beach, VA) Wed., Apr. 30, 2014 at 3:30 pm EDT
I would actually like to add an additional pointer for etiquette regarding the reaction to sero-discordant couples. When people who are just getting to know you and your partner, and they find out ONE of you has HIV..out of discomfort they make themselves feel better by asking, "but you guys are always safe, right?" Really, it's nobody's business how we conduct ourselves behind closed doors. And the kneejerk question about our level of safety is very insulting. I often respond with asking the person if they text while driving - and then lecturing them how dangerous THAT is. They get the message pretty quick after that.
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Replies to this comment:
Comment by: Ben Fri., May. 2, 2014 at 4:32 pm EDT
This is a really good point; I often find myself wondering, as I'm meeting more and more poz guys, if they are in a relationship can I be candid about asking sero-status. This is probably ALSO a really personal issue.
...I will know more when I start dating more regularly LOL


Comment by: Shayne (Idaho) Tue., Apr. 29, 2014 at 10:17 pm EDT
Do we call different stages of a cold by different names? How about different stages of the flu—do we slice up the experience, call each slice by a different name, some more acceptable than others? I have had AIDS for 24 years now, and I have always thought this AIDS/HIV nonsense not just stupid, but potentially life-threatening: I’ve met fools out there who think HIV means screw the condom and AIDS means good-bye. I have always believed this unnecessary confusion—HIV/AIDS—should never have been forced upon us. It has never made any meaningful distinction. AIDS and HIV are the same disease and, like a cold or the flu, should be called one name, end of story.
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Comment by: John-Manuel Andriote (Norwich, CT) Tue., Apr. 29, 2014 at 7:08 pm EDT
AIDS humor was only funny when it was people with AIDS, in the 1980s, using "gallows humor" to ease the terror of the death sentence that an HIV-positive test portended. Language has been important throughout the epidemic, as the earliest generation of AIDS activists understood so well. They knew that calling oneself (or being called) an "AIDS victim" connoted something very different from being a "person with AIDS"--or, better yet, "a person living with HIV" (as are more of us today than who die from late-stage untreated HIV disease, still unfortunately called AIDS). And thank you for pointing out that terminology such as "clean" is utterly offensive as it implies that those of us living with HIV are, by definition, "unclean," like latter-day lepers.
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Comment by: Gerald (Carrollton, TX) Thu., Apr. 24, 2014 at 9:47 pm EDT
I understand being sensitive to someone having been diagnosed with AIDS, however, that individual needs to always remember they have been diagnosed with AIDS. Don't dwell upon it, but know the fact. This can help in the future should you need income assistance, for example. We are always elated to see someone who has been diagnosed with AIDS progress clinically to the point where they appear to be HIV positive, asymptomatic, and we want them to stay that way. But the diagnosis for that individual does not change from AIDS to HIV, according to the CDC.
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Comment by: Ben Tue., Apr. 8, 2014 at 11:59 am EDT
Because Boomers (et al) still conflate HIV/AIDS without realizing that some historical sensitivity is necessary.
My Dr even tells me that "200 count or below=AIDS" isn't necessarily accurate, and should be reclassified.
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Comment by: Michael (Ohio) Fri., Apr. 4, 2014 at 4:31 pm EDT
I tested positive in 1994, last year my Tcell count was 3. I now have AIDS and will always be positive. I'm sorry but AIDS is a reality, I know people would like to disassociate HIV from AIDS but that is simply not the case. Instead of trying to candy coat their diagnosis and perpetuate STIGMA of AIDS not just HIV why don't we embrace each other and realize we are in this together: HIV/AIDS
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A House in Virginia


Ben B.

Ben B.

Ben is an old soul from the American heartland. Indoctrinated as a child on AIDS education throughout the 80s/90s, he's fascinated by the sociological and psychological outcomes that resulted from that exposure, for all of us. Especially as new medicines and new generations rise to the challenge, relegating this once-fatal disease into "merely" a serious condition.

A recent diagnosis paired with this ancient education means internal conflict. Ben thrives on examining the layers of HIV-- where society, relationships and even the law are concerned.

Besides that, Ben's innate intellectual curiosity steers him toward diverse things such as immunity and diet, body politics, and "HIV subculture.

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