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MasBrillante
Dec 3, 2005
Carbonated Water

As a diagnosed hypochondriac with elements of OCD, I have always had an unhealthy obsession with sexually transmitted diseases, particularly HIV/AIDS. Trust me when I say that during college I spent many a sleepless night doing what amounted to thesis research on transmission statistics, danger zones, high risk populations, and symptoms.

Now that I'm medicated and no longer obsessed, I realize that in many ways my obsession stigmatized the experiences of people who actually live with this disease. Furthermore, all of the numbers and recommendations about avoidance obscured the fact there are actual people who live with HIV. With that in mind, I decided to make this thread in a humble effort to find out the reality of what it's like to live with HIV/AIDS or to have a loved one who is coping with this disease.

The purpose of this thread is threefold:

1) To give the SA community a more personal understanding of what it's like to battle with HIV/AIDS as an illness on a day to day basis.

2) To find out the psychological effects of the illness.

3) To combat ignorance and stigma against HIV and people who have been diagnosed with it.

This thread is not about me, so this OP will remain short until I can add information from the Tellers. This is a serious topic. Would-be threadshitters and judgmental assholes beware, moana will be all over this thread. Let's keep the tone humble and respectful, ok?

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VibrioCholera
Mar 7, 2003


I don't know how outdated it is but this training video I watched for work said there's 900,000 people in the U.S. with it. That seems really low?

That's not that big of a number. I wonder if you break it down to homosexual communities / race what it looks like after that.

Iron Squid
Nov 23, 2005

by Ozmaugh


Edit: ugh, nevermind.

The Baumer
Oct 22, 2008


All I can contribute is my experience doing a project for AP bio 13 years ago in high school. We all had to buy two 5 lb bags of M&M's and separate them by color. Every day for a week we had to eat certain colors/combinations at certain times in the same way that HIV patients at the time had to constantly take meds. I had around 1.5 lbs left by the end of the week and I still don't eat chocolate except on rare occasions.

Imapanda
Sep 12, 2008

Majoris Felidae Peditum


I see that you have labeled it an 'obsession', Would that be the same as the internet-dubbed 'bug-catchers', as in intentionally trying to get HIV/AIDS? Or does it mean something else?

There's a lot of reasons people do things that others would find odd, I'm wondering what compelled you, if it really was an obsession, to attempt to get a possibly deadly disease? I can imagine that like shooting yourself in the foot on purpose if succeeded.

Bobby_Wokkerfella
Apr 16, 2007

i am a black female myself and i am not good of can't sporting another black person who doesn't look black,like other brothas and sistas


Imapanda posted:

I see that you have labeled it an 'obsession', Would that be the same as the internet-dubbed 'bug-catchers', as in intentionally trying to get HIV/AIDS? Or does it mean something else?

There's a lot of reasons people do things that others would find odd, I'm wondering what compelled you, if it really was an obsession, to attempt to get a possibly deadly disease? I can imagine that like shooting yourself in the foot on purpose if succeeded.

Correct me if I'm wrong OP, but I'm assuming (hoping) the obession part of it was their hypochondria i.e., being obsessed that he/she was displaying symptoms and worrying that they had it etc.

ghetto wormhole
Sep 15, 2008


Pretty sure he just meant that he was obsessed with worrying about getting sick, you know, like a hypochondriac.

MasBrillante
Dec 3, 2005
Carbonated Water

ghetto wormhole posted:

Pretty sure he just meant that he was obsessed with worrying about getting sick, you know, like a hypochondriac.

Bingo. I have generalized anxiety disorder. The hypochondria and OCD were symptoms of that. I was constantly scared that I'd caught it. Had sex? Must have HIV. Blood drawn? HIV!

I wonder if I'd get better results for this thread if I set it up for anonymous posting. If anyone is interested in mailing me from an anonymous e-mail address, my e-mail address is agua.carbonica@gmail.com. I have every intention of maintaining the privacy of anyone who responds.

Edit: Also, imapanda, that's a really bizarre interpretation of what I wrote...

OneEightHundred
Feb 28, 2008

Soon, we will be unstoppable!


VibrioCholera posted:

I wonder if you break it down to homosexual communities / race what it looks like after that.
I don't recall the race stats, but regarding sexual orientation, it's something like a third of new HIV cases in the US are homosexual men despite them being only 4% of the population.

Sir Ophiuchus
Jan 30, 2007

by T. Finninho


OneEightHundred posted:

I don't recall the race stats, but regarding sexual orientation, it's something like a third of new HIV cases in the US are homosexual men despite them being only 4% of the population.

On the other hand, that does also mean that most HIv transmission is among straight people. Yes, the statistics among gay men are disproportionate, but it's important to bear the above point in mind lest it get labelled a "gay disease". Again.

Ponuh
Nov 8, 2006

No tricks, Mr. President. In a few moments I will release a wave of psychic energy designed to dominate the whole planet. There will be no more 'free will'.

Sir Ophiuchus posted:

On the other hand, that does also mean that most HIv transmission is among straight people. Yes, the statistics among gay men are disproportionate, but it's important to bear the above point in mind lest it get labelled a "gay disease". Again.

It's not a gay disease, but it's censorship to downplay the huge risks it poses to the community. I think the recent uptick in young gays contracting HIV is an unintended byproduct of the campaign to portray it as a universal disease. Which it is. And isn't.

Crackpipe
Jul 9, 2001



Ponuh posted:

It's not a gay disease, but it's censorship to downplay the huge risks it poses to the community. I think the recent uptick in young gays contracting HIV is an unintended byproduct of the campaign to portray it as a universal disease. Which it is. And isn't.

It actually has a lot more to do with people believing HIV to be an easily-managed, chronic disease on par with asthma.

It's not. The drugs alone will make you sicker than you've ever been without ever progressing to AIDS - which will probably happen eventually anyway. If the toll the drugs take on your body doesn't kill you first - which is actually quite likely.

But some stupid young people think "Oh wow, that person with HIV looks good even though they tested positive in like 1993! Why should I worry about it?" They weren't around for the '80s when you could have 30 friends go from happy and healthy to dead in like a year or two.

Then you have people "on the down low" who have sex with men, but are so wrapped up in denial about what it is that they're doing, that they often don't really see themselves as being at risk. And the women they're in open relationships with don't know that their boyfriends / husbands are engaging in activity that puts them in danger. When they break up / divorce for any number of reasons, these women are in a position to unknowingly infect other men.

BEHOLD: MY CAPE
Jan 11, 2004


OneEightHundred posted:

I don't recall the race stats, but regarding sexual orientation, it's something like a third of new HIV cases in the US are homosexual men despite them being only 4% of the population.

No, it's about 60%. The minority of cases are transmitted by hetereosexual sex and that has to do with the biology of vaginal and oral intercourse compared to anal intercourse.

40 OZ
May 16, 2003


"Homosexual men" doesn't mean men who have sex with men.

Human sexuality is very complex, the kinsey scale, blah blah. People choose to socially identify in all manner of orientations, but they don't indicate what you think they do in this case, the case of HIV infection.

Sir Ophiuchus
Jan 30, 2007

by T. Finninho


Ponuh posted:

It's not a gay disease, but it's censorship to downplay the huge risks it poses to the community. I think the recent uptick in young gays contracting HIV is an unintended byproduct of the campaign to portray it as a universal disease. Which it is. And isn't.

I agree with both of those statements. Just making sure everyone's working from the same baseline.

RICKON WALNUTSBANE
Jun 13, 2001



The CDC has a wealth of information on epidemiology, if anyone wants to learn more in detail.


They have a flash app for transmission statistics that's fun to play around with.

Crackpipe posted:

It actually has a lot more to do with people believing HIV to be an easily-managed, chronic disease on par with asthma.

Diabetes is the analogy I hear most often. HIV/AIDS education has to walk a fine line between emphasizing the gravity of being HIV+ but not reinforcing stigma.

TheBigBad
Feb 27, 2004

Madness is rare in individuals, but in groups, parties, nations and ages it is the rule.

Its like waking up with the flu all the time. It requires you to live strictly on medication for the rest of your life. It means that as people find out about your condition you will be ostracized by many.

I Am a Keg.
Sep 25, 2008

by T. Finn


TheBigBad posted:

Its like waking up with the flu all the time.

Wrong.

quote:

It requires you to live strictly on medication for the rest of your life.


Wrong.

Low Carb Bread
Sep 6, 2007



Correct, it's not like waking up with the flu all the time. However I am not sure why you say it is wrong that you need to take medication strictly for the rest of your life. There's more to it than that, of course. But in general most people with HIV and all people with AIDS need to be on fairly strict medication regimens. Fortunately today the management is much simpler with combination medications such as Atripla which is one pill, taken once a day.

I Am a Keg.
Sep 25, 2008

by T. Finn


With a good diet/nutritionfitness/ plan, a good number of people can keep their t-cell count high and viral load low without the aid of meds for a good number of years.

RICKON WALNUTSBANE
Jun 13, 2001



^^^^ err yeah

Low Carb Bread posted:

However I am not sure why you say it is wrong that you need to take medication strictly for the rest of your life.

I think he may be referring to the newer trend of "wait and see" approach to beginning HAART that's replaced the "treat fast, treat hard" mantra

Low Carb Bread
Sep 6, 2007



I Am a Keg. posted:

With a good diet/nutritionfitness/ plan, a good number of people can keep their t-cell count high and viral load low without the aid of meds for a good number of years.

Diet and exercise are important for people living with HIV for a variety of reasons but I'm not aware of any randomized controlled trials which have demonstrated a slowing of disease progression from use of diet and exercise.

There are many people who for years are able to keep their t cell count high and viral load low without use of medications. Oftentimes these may be the fittest in the bunch. But genetics is playing a huge role here. I would liken it to certain types of cancer. There will always be the small percentage of people who survive 5, 10 or 20 years, sometimes even without treatment. And we don't always know why. Unfortunately though, for every Magic Johnson who is doing extremely well with HIV there are those who are doing poorly. The first person I saw die of AIDS was only 36, and he had been on HAART as well.

"What it's like" to live with HIV is such a difficult question because there are so many different types of people who have HIV, and have had different complications from it. Fortunately some of these complications are less common, and more treatable today.

Some of the problems include weight loss (AIDS wasting syndrome), kidney failure, blindness, AIDS dementia, increased risk of certain cancers (Kaposi sarcoma, brain lymphoma, cervical cancer), anemia, increased risk and severity of common and uncommon infections (pneumonia, meningitis, tuburculosis), fungal infections of the skin and throat, parasitic infections, severe diarrhea, side effects of treatment including osteoporosis, redistribution of fat tissue, etc.

MasBrillante
Dec 3, 2005
Carbonated Water

I wonder if not being able to share your disease with people has any effect on what it's like to live with that disease. Some diseases, like diabetes, are rarely kept secret at all by those who suffer from it. And then there are diseases like certain cancers (prostate comes to mind) where people tend to desire to keep them private even to the extent of sometimes not telling family.

Foyes36
Oct 23, 2005

Food fight!

Honestly, I wasn't even aware there was still a lot of shame associated with being HIV-positive in the US.

The weirdest thing you might encounter are people who deny that AIDS is caused by HIV, or that HIV doesn't even exist. They handwave the symptoms away as more-or-less the consequences of drug abuse, 'amoral' (read: homosexual) lifestyles, etc. It absolutely floors me when I meet someone who, while seemingly educated, states these opinions out loud in front of other people despite the ENORMOUS amount of scientific data proving the causal relationship between infection with HIV and development of AIDS. AIDS/HIV denialism creeps me the gently caress out, and almost pisses me off more than creationism.

RICKON WALNUTSBANE
Jun 13, 2001



Pfirti86 posted:

Honestly, I wasn't even aware there was still a lot of shame associated with being HIV-positive in the US.
That's sort of...charming I guess. Would you consider wearing a T-shirt that says HIV-Positive in solidarity, like Annie Lennox?


What do you think people would think about you? How do you think people would treat you?

HIV/AIDS Stigma: An Impediment to Public Health posted:

People at substantial risk for HIV infection who are not tested in a timely manner because they have previously experienced—or fear that they might come to experience— discounting, discrediting, or judgmental attitudes from health care providers and their staffs are a tangible example of stigma’s impact on our ability to effectively treat HIV/AIDS. After all, no matter how well federally funded programs such as the Ryan White CARE Act might work to minimize disparities in access to quality care, care for HIV/AIDS cannot begin without the diagnosis of HIV infection. Further, people who are infected with HIV and do not know it are less likely to take steps to prevent spreading the virus to others.

Foyes36
Oct 23, 2005

Food fight!

Foaming Chicken posted:

What do you think people would think about you? How do you think people would treat you?

Oh, I don't doubt that there is, I'm just stating that I failed to appreciate that it was still a large problem until reading this thread. I fully agree that that makes me a pretty ignorant person

who cares
Jul 25, 2006

Doomsday Machine

Pfirti86 posted:

Honestly, I wasn't even aware there was still a lot of shame associated with being HIV-positive in the US.

My estranged father is HIV+ and I feel very weird telling it even to the people that I am closest to. It's something that people don't know how to react to. I don't have the disease, don't even talk to my father, but still feel ashamed to say it. This may seem insensitive but the mention of "HIV" or "AIDS" is immediately alienating when you speak of it in a personal context.

Crackpipe
Jul 9, 2001



Pfirti86 posted:

Oh, I don't doubt that there is, I'm just stating that I failed to appreciate that it was still a large problem until reading this thread. I fully agree that that makes me a pretty ignorant person

Read this. Any library will have a copy.

Just ignore the stuff about Gaetan Dugas being responsible for bringing HIV to the U.S. That didn't happen.

I Am a Keg.
Sep 25, 2008

by T. Finn


who cares posted:

My estranged father is HIV+ and I feel very weird telling it even to the people that I am closest to. It's something that people don't know how to react to. I don't have the disease ... but still feel ashamed to say it.

You're a super terrible person.

RICKON WALNUTSBANE
Jun 13, 2001



Pfirti86 posted:

Oh, I don't doubt that there is, I'm just stating that I failed to appreciate that it was still a large problem until reading this thread. I fully agree that that makes me a pretty ignorant person

I don't think it's something most people think about unless they know someone who's positive.

I Am a Keg. posted:

You're a super terrible person.

It sounds like a direct result of internalizing the prejudices around HIV, so it's just sad more than anything.

Reene
Aug 26, 2005



Pfirti86 posted:

Honestly, I wasn't even aware there was still a lot of shame associated with being HIV-positive in the US.

The weirdest thing you might encounter are people who deny that AIDS is caused by HIV, or that HIV doesn't even exist. They handwave the symptoms away as more-or-less the consequences of drug abuse, 'amoral' (read: homosexual) lifestyles, etc. It absolutely floors me when I meet someone who, while seemingly educated, states these opinions out loud in front of other people despite the ENORMOUS amount of scientific data proving the causal relationship between infection with HIV and development of AIDS. AIDS/HIV denialism creeps me the gently caress out, and almost pisses me off more than creationism.

There are people who still think you can transmit HIV through saliva i.e. coughing or sneezing, or other casual contact.

This got posted in some drat thread here but it's worth reposting here as it is relevant:

http://abc.go.com/watch/what-would-...msearch_results

40 OZ
May 16, 2003


Pfirti86 posted:

The weirdest thing you might encounter are people who deny that AIDS is caused by HIV, or that HIV doesn't even exist. They handwave the symptoms away as more-or-less the consequences of drug abuse, 'amoral' (read: homosexual) lifestyles, etc.

Your post is strangely worded. Have I misread it?

HIV is a consequence of gay sex and intravenous drug use, most of the time. Religious nuts don't have any problems here or deny that having gay sex gives you HIV->AIDS, they sometimes celebrate it.

I Am a Keg. posted:

You're a super terrible person.

You do realize that his dad isn't around, and that might be from other reasons than him being a secret agent or astronaut, right?

MasBrillante
Dec 3, 2005
Carbonated Water

I Am a Keg. posted:

You're a super terrible person.

This thread is not for judging other people's personal experiences. Please don't run people away.

Sir Ophiuchus
Jan 30, 2007

by T. Finninho


40 OZ posted:

Your post is strangely worded. Have I misread it?

HIV is a consequence of gay sex and intravenous drug use, most of the time.

First of all, "result" is better than "consequence" in this context.

And I think they're trying to point out that this engenders thinking like the girl who told me in high school that "I don't think government money should go to HIV positive people, because they brought it on themselves by having risky sex or abusing drugs."

Harry
Jun 13, 2003


40 OZ posted:

Your post is strangely worded. Have I misread it?

HIV is a consequence of gay sex and intravenous drug use, most of the time. Religious nuts don't have any problems here or deny that having gay sex gives you HIV->AIDS, they sometimes celebrate it.

Some people say AIDS is a consequence of gay sex or drugs, and that HIV doesn't exist. Other people say HIV doesn't exist because there's not some "he has HIV" bacteria or something. They're bother clearly wrong.

40 OZ
May 16, 2003


Sir Ophiuchus posted:

First of all, "result" is better than "consequence" in this context.

And I think they're trying to point out that this engenders thinking like the girl who told me in high school that "I don't think government money should go to HIV positive people, because they brought it on themselves by having risky sex or abusing drugs."

Yeah, exactly.

This is a game we play with fundamentalist hatemongers to downplay the gay buttsex angle, in a hope that they won't notice.

There was a period when this game was more widespread, and heterosexual librarians in south dakota were being told by the media they were exactly just as likely to get HIV as someone who spends 6 days a week manning a gloryhole in southern africa.

While it might be temporarily advantageous, epidemiology has not been well served in the past by lying to people, and it shouldn't continue in the future.

In other words, we shouldn't play this stupid game where we act like anal sex and intravenous drug use has nothing to do with it in a cynical hope we can trick monstrous religious whackos into being political allies.

Dr. Video Games 0081
Jan 19, 2005

He tries to tell people that he is alone, all by himself; he wants to love and be loved. His music is a call for acceptance, respect, love, underst

40 OZ posted:

Your post is strangely worded. Have I misread it?

HIV is a consequence of gay sex and intravenous drug use, most of the time. Religious nuts don't have any problems here or deny that having gay sex gives you HIV->AIDS, they sometimes celebrate it.

The people who believe that HIV doesn't cause AIDS aren't conservatives, religious or otherwise. They're gross liberal hippie types with beards and ugly clothes.

who cares
Jul 25, 2006

Doomsday Machine

I Am a Keg. posted:

You're a super terrible person.

Having an HIV+ intravenous drug user for a father isn't something I'm proud of. When people who don't know me very well ask about my dad, I prefer not to bring it up because people react strangely. I used the word "ashamed" in my post as a direct response to the post I quoted and it might not be the best word to describe how I feel, but the general sentiment still stands regardless of your opinion of me.

RICKON WALNUTSBANE
Jun 13, 2001



40 OZ posted:

Yeah, exactly.

This is a game we play with fundamentalist hatemongers to downplay the gay buttsex angle, in a hope that they won't notice.

There was a period when this game was more widespread, and heterosexual librarians in south dakota were being told by the media they were exactly just as likely to get HIV as someone who spends 6 days a week manning a gloryhole in southern africa.

While it might be temporarily advantageous, epidemiology has not been well served in the past by lying to people, and it shouldn't continue in the future.

In other words, we shouldn't play this stupid game where we act like anal sex and intravenous drug use has nothing to do with it in a cynical hope we can trick monstrous religious whackos into being political allies.

What the gently caress is wrong with you? That never happened. No one's denying risk factors or transmission rates. Public health has been trying to increase awareness outside of MSM and IDU because heterosexuals get HIV too.

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40 OZ
May 16, 2003


Dr. Video Games 0081 posted:

The people who believe that HIV doesn't cause AIDS aren't conservatives, religious or otherwise. They're gross liberal hippie types with beards and ugly clothes.

Uh, exactly. I was attempting to state that conservatives were not generally part of the denier community.

Harry posted:

Some people say AIDS is a consequence of gay sex or drugs, and that HIV doesn't exist. Other people say HIV doesn't exist because there's not some "he has HIV" bacteria or something. They're bother clearly wrong.

Do you mean by "some people" your uncle, or that this is a prevailing ideology amongst American fundamentalists?

HIV, and thus AIDS, could be reasonably stated as a result of gay anal sex or drug use. Conservatives cynically adore this brutal reality.

You are stating that there is a popular conservative ideology which agrees with the previous statement, the scientific reality, except that they deny that HIV exists. Can you show a source here, because this is extremely nuanced.

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