Obsessed/interested in HIV and AIDS

[pumpkinbump]

Anyone else? My interest started when I was a child in the 80s. Remember the terrifying tombstone ad? I'm sure I remember a leaflet coming through the door too but not sure. I remember watching a film at my nan's house about the start of the epidemic with Matthew Modine. I found it mysterious, terrifying, fascinating. I was only a young child, around 5 or 6. I remember learning Freddie Mercury had it, and when Queen came on yhe radio, I would cover my ears as I thought I would catch it. I also remember when a boy grabbed me and kissed me on the lips at school, I came home crying to my mother thinking that I had caught it. As an adult, I'm still fascinated. I've watched every documentary, read lots, including HIV forums. The obsession dies down for a while until it starts again for a few weeks. I remember them saying they would have a cure for it in 2 years at the beginning but still we don't have one. I think it's why I find it so fascinating. Anyone else like this or am I just nuts?

There is still a stigma attached to it I think. It's not a 'fashionable' condition.

@billydilly

In Brighton, where I live, there's a bus with 'HIV isn't scary anymore!' in huge festive letters; millions of people in Africa wouldn't agree!

Yes but context is everything. That bus isn't in Africa.

And there's more context too -- that specific bus is dedicated to a leading researcher into HIV and the care of HIV positive people, and the panels inside are full of useful information and resources about risk, testing, diagnosis pathways and so on. So it's not just a slogan.

The message around HIV now in the UK and especially in gay meccas like Brighton is to do with getting people to test regularly, so that cases are picked up and people can get onto the right medication.

So that message is not so much about minimising HIV as it is about demystifying/destigmatising it.

It was people being 'scared' of HIV that prompted so much denial and avoidance. Fear leads people to make bad decisions. To confront something means confronting and overcoming fears about it as well.

Convincing the young shaggers of Brighton that HIV testing and even potential diagnosis isn't scary is a really good way to get more people to start getting regular sexual health tests, in my view.

@Triffid1 I think because treatment is so successful it seems possible that some developed countries could virtually eradicate it. The U.K. government announced a year or so ago that they plan to eradicate any new HIV infections by 2030 which will obviously rely on making sure people are aware of their infection and on treatment to prevent them transmitting it. This was pre-Covid however.

Fuckadoodle - that's sad, i guess they weren't willing to take the risk at the time.

Over50andfab - the one I read is poz.com.

Fratellia - I remember that. She was a blonde girl wasn't she?

African disease? It's shocking how many can know so little about it isn't it?

I watched a documentary yesterday, a recent one based in Jackson missisippi (sp?) and it stated that young black gay men had a one in two chance of getting it.

It is still scary but in a different way.
I know three men living with HIV - and for two of them I can say it’s taken a massive toll on their mental health. One was diagnosed early 2000s aged about 20 the other maybe 2012 and he’s a bit younger,

Its not a death sentence and there are some amazing drugs but it can still take a bit toll I think.

Imagine the money the drug companies would lose if they did find a cure.

@Carolbaskinstiger

It is still scary but in a different way. I know three men living with HIV - and for two of them I can say it’s taken a massive toll on their mental health. One was diagnosed early 2000s aged about 20 the other maybe 2012 and he’s a bit younger,

Its not a death sentence and there are some amazing drugs but it can still take a bit toll I think.

I can imagine. I don't know how I would take such news, but it's different hearing it today than it would have been in the 80s and 90s. Its the drugs that have changed though, not the virus, so there is still a deadly virus inside the person which would be fatal if it weren't for medication. I think that's what I find so scary about it. Then there are different strains, some more resistant than others, building resistance to medications that may have previously been working.

I'm a doctor but even at school I was also fascinated by it. Have you read And the Band Plays On? If not would highly recommend!

I remember learning Freddie Mercury had it, and when Queen came on the radio, I would cover my ears as I thought I would catch it.

Freddie announced he had AIDS and died 24 hours later. Did you honestly think you were going to catch it from a dead person's voice?

Obsess about it if you like but lurking on forums for people who have HIV is voyerisric and disgusting. They’re posting about their real life, its not some drama to entertain people with.

@freddiesmoustache

I remember learning Freddie Mercury had it, and when Queen came on the radio, I would cover my ears as I thought I would catch it.

Freddie announced he had AIDS and died 24 hours later. Did you honestly think you were going to catch it from a dead person's voice?

Sorry, yes it would have been after obviously. I know how ridiculous it is. Stupid child that I was!

@LadyCatStark

Obsess about it if you like but lurking on forums for people who have HIV is voyerisric and disgusting. They’re posting about their real life, its not some drama to entertain people with.

I'm certainly not treating it as entertainment.

Then why are you lurking about on forums? There’s enough stigma in real life around HIV, surely people who have it should be free to post about it anonymously without having other people lurking around, reading all about their lives. Many can’t talk to anyone in real life about it, they should be able to have a safe space.

@pumpkinbump not the same but still a huge thing to live with. I remember telling my mum about the friend (early 2000’s - and actually may have been just before) and her still saying “have you shared drink etc with him”.
The stigma was still there then, and am sure it’s still there today to some degree.

@pumpkinbump yes she was a blonde girl, stuck out in my mind because I was the same sort of age as her when I watched it and she was simultaneously just trying to get on with having a normal teenage life. She must be 30ish now.

@pumpkinbump
Have you read "How to survive a plague" ?
It's about the HIV/AIDS epidemic, including a lot on the activism, up to today where for the western world at least you can hope for normal life expectancy, and suppression to the point of no transmission. There has been incredible medical breakthroughs, but for those suffering in the earlier years and the attached stigma; truly horrific.

@LadyCatStark

Then why are you lurking about on forums? There’s enough stigma in real life around HIV, surely people who have it should be free to post about it anonymously without having other people lurking around, reading all about their lives. Many can’t talk to anyone in real life about it, they should be able to have a safe space.

Lurking makes it sound like I'm getting some sort of perverse kick out of reading their misfortune, or as you say, finding it entertaining.

I use it for educational reasons, and to gain insight into what it is like to live with HIV, from real experiences. It is an open forum, you don't need to register, and posters are told that before posting.

It's no different to reading people's stories here, mental health or general health ones such as cancer etc. There have also been HIV posts on mumsnet. Are we to ignore those?

I don't know how I would take such news, but it's different hearing it today than it would have been in the 80s and 90s. Its the drugs that have changed though, not the virus, so there is still a deadly virus inside the person which would be fatal if it weren't for medication. I think that's what I find so scary about it. Then there are different strains, some more resistant than others, building resistance to medications that may have previously been working.

Ok it can be shit to get an HIV diagnosis but learning the facts from reliable sources helps. Yes, it's certainly different now (in the UK at least, though as has been mentioned by @Triffid1 it's still very much a life threatening condition in other parts of the world). It's treated here as a chronic condition. I don't see it so much as a deadly virus - why would I when I have treatment to suppress it? Ok I know what might happen if I stop taking my 2 pills a day but for me I prefer to think of it as it feels an unwelcome lodger kept firmly under control so it doesn't do any damage to my immune system. As a lovely lady I mets once said "I am the landlady and I dictate the rules"

As for resistance, this isn't quite correct. Before we start meds we are tested to see if we have any resistance to any of the medications. I like many others have HIV 1 wild type virus which means I can take any of the combinations (taking into account other blood test results). If we are adherent to our meds the virus is kept at undetectable levels so no resistance can develop. It's when someone regularly misses taking them or stops and starts that resistance can develop.

[quote GeorgiePorge]@pumpkinbump
Have you read "How to survive a plague" ?
It's about the HIV/AIDS epidemic, including a lot on the activism, up to today where for the western world at least you can hope for normal life expectancy, and suppression to the point of no transmission. There has been incredible medical breakthroughs, but for those suffering in the earlier years and the attached stigma; truly horrific.[/quote]
Yes, there's also a documentary called the same too. Very interesting. The fact they wouldn't release the drugs, just absolutely terrible. The work they did was amazing. It's heartbreaking to see a lot of it, they used to use black rubbish sacks to remove the men who passed from the hospitals. Can't imagine having to have seen that. It's really chilling.

@LadyCatStark

Then why are you lurking about on forums? There’s enough stigma in real life around HIV, surely people who have it should be free to post about it anonymously without having other people lurking around, reading all about their lives. Many can’t talk to anyone in real life about it, they should be able to have a safe space.

poz.com is an open forum attached to an informative website, although if not living with HIV would can only post in a couple of sections like "do I have HIV?" Quite handy if you want a risk assessment doing but be aware that Jim has a good but very no nonsense approach. Anyone interested can start via this link and go though Community to forums www.poz.com

@HIVpos

I don't know how I would take such news, but it's different hearing it today than it would have been in the 80s and 90s. Its the drugs that have changed though, not the virus, so there is still a deadly virus inside the person which would be fatal if it weren't for medication. I think that's what I find so scary about it. Then there are different strains, some more resistant than others, building resistance to medications that may have previously been working.

Ok it can be shit to get an HIV diagnosis but learning the facts from reliable sources helps. Yes, it's certainly different now (in the UK at least, though as has been mentioned by @Triffid1 it's still very much a life threatening condition in other parts of the world). It's treated here as a chronic condition. I don't see it so much as a deadly virus - why would I when I have treatment to suppress it? Ok I know what might happen if I stop taking my 2 pills a day but for me I prefer to think of it as it feels an unwelcome lodger kept firmly under control so it doesn't do any damage to my immune system. As a lovely lady I mets once said "I am the landlady and I dictate the rules"

As for resistance, this isn't quite correct. Before we start meds we are tested to see if we have any resistance to any of the medications. I like many others have HIV 1 wild type virus which means I can take any of the combinations (taking into account other blood test results). If we are adherent to our meds the virus is kept at undetectable levels so no resistance can develop. It's when someone regularly misses taking them or stops and starts that resistance can develop.

Thank you. I hope none of this thread has offended you. And thank you for putting that right. I have read that people have had to change medication because viral load has increased and CD4 has decreased but this must be why. I am glad you are able to live a normal life with the medication that is available.

I grew up in the 80’s petrified by that advert . Now a close member of my family is hiv positive it no longer feels scary.

Regarding the Brighton HIV bus - exactly what @LadyCounterblast said - thank you. "HIV isn't scary any more" is only written on one side of the bus. Here's a pic of the other side, and as mentioned there's further info inside the bus itself.

There is a lot of work being done in trying to demystify HIV and give reliable up to date facts, this with the aim to get to zero new infections by 2030. However it's not only that, it's also zero stigma by then too, something that some of us can still experience.

It also needs to reach all communities to get tested as there are still so many people living unknowingly with the virus. It's HIV testing week this week so worth getting one if, say, in a recent relationship or not tested for some time. Easy to book one online.

@Wonkydonkey44

I grew up in the 80’s petrified by that advert . Now a close member of my family is hiv positive it no longer feels scary.

I could quite understand that. Now we know how it isn't transmitted there really isn't anything to be concerned about. I have never known someone personally with HIV, that I know of. I think it's the images from back then that have instilled the fear of God into everyone. It's come a very long way. There is talk of a monthly or two monthly injection in the pipeline.