Where to find information about HIV

People learnt about HIV from television, leaflets, newsletters, books, attending support groups, the Internet, academic publications and talking to health professionals and friends. Clinics often provide a wealth of written information, including booklets and magazines such as Positive Nation. The quality of information about HIV varies greatly, and so people said you need to weigh it up carefully.

Incorrect information is available on the Internet.

Age at interview 39

Gender Male

Age at diagnosis 34

View profile

Because all sorts of material is available, especially on the internet. And you, you end up reading things and you’ The problem is that you don’t know who wrote them and, and where they came from, whether the person who wrote them was sane! And you know I remember coming across websites, I mean there was, there, I remember coming across this website by this man who, he was dedicating his entire life to campaigning against the use, any use of AZT. And he was a, you know he was a doctor and he was speaking with all the authority of a doctor. And these are things which can sort of really lead you astray, because AZT is part of my current combination. I mean God, you know it kept me alive.

Embed Print Transcript

When it comes to information, people have very different needs. Of those we interviewed people generally wanted some information, but they also wanted to avoid information overload: “I’m not sure that showering me with heaps of information would be necessarily productive.” Sometimes the danger with too much information is that you can get distracted from looking after yourself: “I sort of hid behind information,” said one man. However, gaining extensive information about HIV really helped some people.

To a certain extent he dealt with HIV by becoming informed.

Age at interview 37

Gender Male

Age at diagnosis 24

View profile

My way of dealing with it was to try and inform myself. Once I got a diagnosis I spoke to my friends about it, and told my friends, the people I was living with who was supportive. I told another friend who was incredibly practical and said okay let’s go and find out what we can about this, let’s go and research and meet people and talk to people about this and’ which is exactly my way of dealing with things as well. And so that is what we did, we went to a drop-in centre, and chatted about everything and took away a whole load of information and leaflets and brochures and things. And then I kind of having I guess having informed myself to a level where I knew all of the fundamentals about it, I decided that I really didn’t want to think about HIV anymore. And there was nothing I could do, and so until there was something I could do I should just carry on with my life and get on with it and do what I needed to do.

Embed Print Transcript

Keeping abreast of new HIV information helps her to cope. (Read by an actor.)

Age at interview 30

Gender Female

Age at diagnosis 29

View profile

And normally information changes from time to time, and maybe there is certain information that you needdepending on your, maybe things like, how you adhere to your drugs. Drug resistance and things. And all the other research that is coming up.

So you need to keep abreast of what is happening. So as to cope with your own condition.

Embed Print Transcript

People said that there were limits to our knowledge about HIV so our understanding about some things seemed shaky. For instance, why is it that some people survive with HIV without medication and without getting sick?

The success of modern anti-HIV drugs means that people do not need to be as well informed about treatments as in the 1980s and early 1990s when many felt that information could mean the difference between life and death. Treatment information is very complex and constantly growing, and only a few people we talked to tried to keep up-to-date with it.

Keeping up with information about safe sex mattered to a number of people. Anal and vaginal sex without condoms is still the most common way that people get HIV. Only a small proportion of people get HIV through oral sex as the risks are much lower. But sexual activity is not the only way people can be infected by HIV. Other ways people can be infected are: injecting drugs or receiving medical care with unsterilised equipment; women can pass HIV on to their unborn baby during pregnancy, labour or delivery; the process of getting tattoos and piercings, and; blood transfusions and blood products, although this has dramatically reduced since blood screening was introduced in the 1980s.

Some of the gay men we interviewed believed that people should all now know about how HIV is caught, since safe sex information has been around for two decades. However, sex education in schools can be patchy and young people can still miss out on safe sex information. The number of older people (over 50) who are newly diagnosed with HIV is increasing which may be because they are also less knowledgeable about HIV and less likely to sexually protect themselves. Some people said that there had not been a high profile general education campaign like the frightening ‘iceberg and tombstone’ since the 80s and so another public education campaign was long overdue. One man said he was 7 years old at the time of the ‘tombstone’ advert and so “he missed out.”

Believes that basic sex education in schools is failing many young people.

Age at interview 46

Gender Male

Age at diagnosis 27

View profile

And were not educating people. I mean that’s the that’s the frightening thing is that schools, although they’ve got to cover HIV, they’re not doing it in sex education, they’re doing it in biology. And the point is not getting across. And we know the point’s not getting across because we have something like 100,000 cases of Chlamydia every year. Which is a very easily transmittable infection, we have, teenage pregnancies are running out of control’ I think we had it right partly towards the late 80s. We frightened a hell of a lot of people, with the government’s campaign, but it kept it in peoples consciousness that there is a disease out there and you can get’ you can get it from unprotected sex.

Theres an interesting guy I spoke to who basically said, ‘Well, if the girl wants me to use a condom I know she was safe, right. But if she didn’t want me to use a condom, then I’d put one on [laughter]. I mean using that weird logic, I was saying, ‘What about pregnancy? Have you ever thought about that?’ ‘Well I withdraw, and I was saying, ‘Well you can still make them pregnant. So basic information like that is not getting through’ And you are not taught about gay sex in school.

Embed Print Transcript

He did not gain the knowledge and skills he needed to have safe sex.

Age at interview 26

Gender Male

Age at diagnosis 17

View profile

I think you’ you know, at 17 I was very na’ve, I was very young, very believing. And when I was lacking confidence it was because I just didn’t have all the knowledge. I wasn’t worldly enough, I was just you know kind of, newly arrived and wanted to experience life and learn as much as possible. But if you don’t have all of the information and knowledge at school you know it boils down to luck. It’s like a national lottery that you get a teacher that’s able to talk about these issues with you and that’s not how sex education should boil down. Everyone should know where their local GUM is, know where you get tested. Know what service is available in case it is a positive result. But even when you access medical services or, you know you speak to medical professionals and you want to get the best advice, because you’re at such a young age, sometimes they want to protect you, they don’t want to just give you the information and that was what happened to me.

Embed Print Transcript

Gay men visiting or migrating to the UK from other countries where sex is not discussed openly may also lack information, or may have received misinformation about how HIV can be contracted. Additionally, “people don’t just absorb information like a sponge” they adapt it to their own way of thinking. This means people can get things wrong. One man believed “because I was a good boy, a good guy because I was so religious, I couldn’t get HIV.”

Coming from a country where sex and HIV was not discussed meant that he misinterpreted advice…

Age at interview 34

Gender Male

Age at diagnosis 30

View profile

I just have to say one thing. Every single person I metI mean thatI was 24, 25 or 26. But every single gay man I was speak to, they thought I’m like 16, 17. I looked really young then. And they always give me lots of long lecture about HIV, AIDS. ‘You have to be very careful. So I knowI already worked out I had to be very careful. So based on that, sex things is justI thought sexHIV isyou only can catch from man to man, you know.

So that’s another thing in my subconscious. So I always worry I can’t have sex with a man. So even kissing, I was concerned. If I kissedI thought I gonna catch something from people. It, it justIt’s kind of a cocktail, I don’t know, background, Catholic traditions, and from Asia. And then the, the scarebeing paranoid about HIV AIDS.

Embed Print Transcript

Says that some Africans may believe that only thin and sickly looking people can have HIV while…

Age at interview 38

Gender Male

Age at diagnosis 36

View profile

So I think that’s the problem that we are facing there. So every person thinks that it won’t catch me, it will catch another person because of the way the message is told. It’s very, very difficult yeah. And in the end, the message is lost

Because if, for example if I see two women and one is good looking and the other one is thin. You see I would take that the one who is thin to be HIV positive. So I’m looking at the outside. So I mean, so that’s the reason why.

When somebody’s healthy, they’re considered to be fit and free from HIV. But if a person from. they are just born thin and you know sickly, they’re taken to be HIV positive. You could be going round and yet you have it. And you’re passing it over and you don’t know, just because you look healthy.

Embed Print Transcript

Differences in professional opinion and knowledge means that messages about safe sex can seem contradictory. And safe sex, like any activity in life, is not completely without risk. So people need to decide for themselves about the level of risk they are willing to take. For instance, some people used condoms for oral sex because they were not willing to take the small risk of transmission. One man used a number of condoms at once for vaginal sex (although this is not recommended).

Says that we need to be clearer in educating people about which body fluids can transmit HIV.

Age at interview 46

Gender Male

Age at diagnosis 27

View profile

I think the press had a lot to do with hyping it up and people they have this fixation with bodily fluids. Oh my God bodily fluids are infectious. So it’s only when you actually sit down and say, as I do with social workers. ‘What bodily fluids are infectious?’ ‘Are we talking urine are we talking sweat, are we talking tears are we talking blister fluid? What bodily fluids are we talking about?’ And, and basically it just comes down to three which are, potentially could cause an infection which would be blood, vaginal secretion or seminal fluid. The us human beings that are not in the medical field come into contact with, you’ll also find it in cerebral fluid and lymphatic fluid and things, but, trying to explain to people that it’s not all bodily fluids’ that’s the wrong word to use but a lot of people say bodily fluids. And basically what the, it should be more specific yeah.

Embed Print Transcript

It is possible to pick up other, perhaps drug-resistant, strains of HIV if you already had HIV and had unprotected sex with other people who were also HIV positive: this is known as ‘superinfection’, but this is very unlikely if both partners have an undetectable ‘viral load’. Others said there were other serious STIs that you could pick up through unprotected sex, some of which could make it easier to pass on HIV to uninfected people.

Believes that other sexually transmitted infections can make HIV infection more likely.

Age at interview 48

Gender Male

Age at diagnosis 29

View profile

And historically looking at the figures, you can say, if oral sex was a risk then wed see a hell of a lot more gay men infected with HIV than the present just short of 2,000 every year. What were actually seeing in the clinics is multi-infections where oral sex has been the route of transmission. So if they’ve been infected, shall I say if the guy had’ the positive guy had syphilis right, and you performed oral sex on him, not only would you get syphilis but you would also get HIV. Sort of piggy backing on the back of the initial infection, although probably that’s not technically correct but, that’s the way it works. So whether were talking about Chlamydia, again you see a hell of a lot of Chlamydia, something like 100,000 new cases every year right, in the United Kingdom. So if you pick up Chlamydia and you’re HIV positive, theres a good chance you’ll pick up both infections through oral sex. Whereas if they were solely HIV positive, then you’ll probably need, more difficult to acquire HIV as a mono-infection.

Embed Print Transcript

Finally, there is sometimes a gap between our knowledge of safe sex and what we do in sex: “there’s much more to sex than just knowing things.” One man who became infected with HIV through unprotected anal sex said, “I could have written a book on what was known about HIV, I was the ‘good gay’, I knew all about HIV.” (See ‘How people became infected’, ‘Casual sex’ and ‘Sex in relationships’).

Initially he believed he could restrict his sex life because he was not aware of the full range…

Age at interview 38

Gender Male

Age at diagnosis 24

View profile

I would never have dared to admit I had unprotected sex actually. But the reasons why would have been even more taboo as far as I was concerned. But it’ no one had ever said anything about the pleasure aspect of it. And I can remember actually, there was just one ‘I can remember seeing, there was a very, an elderly sexual health doctor at the [sexual health clinic] Clinic and I can remember seeing him in ’90. I mean I was very good, I went to get my Hepatitis B vaccinations and get these regular sexual health screens. I mean what the fuck was I going to get? You know. It’s like you know. Anyway you know, I was very good and went to get all these screens when my risk factors for getting anything was zero essentially. And I can remember him saying, you know looking at what, the sort of sex I was having and he said, ‘And do you enjoy this? And do you think you can sustain a lifetime of this?’ I said, ‘Oh yes’, you know, I was only like 21 or 22 and I can remem’ you know it stuck in my memory and I can remember him just nodding his head. And he went, ‘Fine, fine. And then you know, I know who, I mean, I actually know it was a guy called [name of historical figure] who established the [sexual health clinic] Clinic and was a very human, a very, a very compassionate doctor actually. I subsequently found out and very, really realised what’s involved in the realities of human sexual relationships and what feeds into human sexuality and things like that.

Embed Print Transcript

Talking about HIV

Why talk? The people we talked to felt that chatting about concerns, especially with other HIV positive people, was vital to living well with HIV....

Learning to accept HIV

"Now I have a new life... I feel more happy and I feel more strong." Acceptance A number of people thought that coming to accept...