Episode 8: Living with HIV

Sex Talk Episode 8 – Living with HIV

Voice Over: You're listening to Sex Talk. A podcast all about sex. In this episode expect to hear some colourful language and conversations of a sexual nature. You may want to pop on a pair of headphones for some privacy during this podcast.

Voice over: Sex talk. Coming up on this episode of sex talk

Garry: So when I was diagnosed 27 years ago I was given 5 years to live and I was 23 at the time in college. So I went to get support and there were people very, very sick sitting around having lunch waiting for bingo and I just thought this is not what I want. It was very much about how you supported people to die, and to die well and I was very determined that I wasn't going to die.

Voice Over: Sex talk. Real stories. Real issues.

Adele : Hi, and welcome to the sixth episode of Sex Talk. I'm Adele Roberts and I'm joined by my co-host Hiliary Ineomo-Marcus for our final episode of series 1!

Hilary: Adele I'm sad, but it's been a great journey with you. It's not the end, there is going to be more.

Adele : We'll be back for series two but series one has been wonderful and I'm really happy that you've come in your favourite shirt today for me.

Hilary: I had to it would have been criminal not to.

Adele: And you've ironed it as well. What a guy!

Hilary: What are you trying to say I always iron my shirts Adele. But if you've listened to the previous episodes, you would have heard us delving into different aspects of sex, from sexual health to addiction, sex and dating to sexuality and religion. We have been joined by a host of doctors, therapists, experts and sexperts who have been sharing their experiences and advice on how to stay safe and healthy.

Adele: If this is your first time listening to Sex Talk- welcome! Please subscribe to this podcast so you can go back and listen to our previous seven episodes, and so you're ready to receive series 2 as soon as it's released in June!

Hilary: In the last episode of Sex Talk we were talking all about the adult industry, and in this episode we are going to be discussing living with HIV.

Adele: Today we'll be hearing from two people living with HIV, who are doing amazing work with the charity, Positively UK.

Leasuwanna: When someone says to me no I don't need to be tested I say 'do you know what the H stands for in HIV?' and they're like 'what?' I go 'human. Every single human being can be effected by this.' 50% of the time they will test because of that sentence.

Adele: HIV is something we've spoken a lot about on Sex Talk, as although medical advances have been made, the public perception of HIV is often still stuck in the past. We want to open up the conversation on Sex Talk to try and clear up some misconceptions!

Hilary: In 2017 there was an 18% decline in new HIV diagnoses in the UK. Although there is still no cure for HIV, we now have the tools to end the epidemic. We've spoken a lot on this podcast about testing, and I took a HIV test myself on episode 1 to show just how easy it is. We've also talked about Prep, currently on trial in the UK, which is a daily pill which can be taken to prevent a HIV negative person contacting the virus when having unprotected sex with somebody who is HIV positive and not on treatment.

Adele: People with HIV who are on effective treatment can live long and healthy lives, and not pass the virus on to their partners, or even their unborn children.

Hilary: Although HIV in the UK is more prevalent in certain key populations, including men who have sex with men and black African populations, the prevalence of HIV is growing in heterosexual men and women due to low levels of awareness and stigma around testing. HIV doesn't discriminate against age, gender, sexuality or race, it effects everybody, which we'll be talking about more in today's episode.

Voice over: Sex talk.

Adele: Today we're going to be joined by two people who work with the charity Positively UK. Positively UK provides peer-led support and information to women, men and young people living with HIV, to help them manage any aspect of their diagnosis, care and their life with HIV.

Hilary: Positively UK run a programme called Project 100, which aims to provide access to peer support for everybody in the country living with HIV. Since the programme began 3 years ago, 450 peer mentors have been trained to offer support to those recently diagnosed with HIV.

Adele: Joining us in the studio now is Garry Brough, the co-ordinator of Project 100.

Hilary: Welcome to Sex Talk Gary!

Gary : Hi.

Hilary: So Gary can you tell us a little more about project 100 and why it was set up in the first place.

Gary : One of my previous roles was in integrating peer support within a clinical setting to create the role of a patient rep in the clinic, so when somebody was diagnosed they would meet somebody living with HIV who would then be able to have those conversations that maybe they wouldn't be quite as confident or comfortable having with a doctor. Or just to get that experience to know how did you manage telling somebody else? Or how did you manage taking your medication? That process has moved on, and the British HIV association had recommendations in the 2013 Standards of Care which said that there should be access to peer support from clinics. So Project 100 was funded for 4 years to train people living with HIV to provide the support and to link that both into clinics and voluntary sector organisations across the UK. One of the issues and one of the misconceptions is that peer support is something that's needed for people that have just been diagnosed, and clearly that's a really important point to engage with somebody, but we're seeing lots and lots of people who didn't have the engagement within services and support who have been diagnosed for a very long time who've lost friends, lost family, and who are very isolated now so the longer term diagnosis. Those people who are aging with HIV and are now starting to face other health conditions, as well trying to navigate those services and manage a life which might be really shrunk and isolated, and peer support can be a lifeline for those as well. So it's at any point that somebody might need a helping hand whatever their live issue might be is where peer support really comes in.

Adele: How effective is Peer support?

Gary : For me I think it's essential. I would say that, it's why I've been doing this work for that last 20 years, because I've recognised in living with a condition having medical information is essential but having the skills of managing day to day on how you process that diagnosis, how you manage medication, how you manage disclosure, relationships, all of those things need that social perspective and the personal and individual perspective that you don't get from a clinician. Certainly in relation to things like increase in confidence, reducing isolation, they're the big benefits that you see with peer support.

Hilary: You were diagnosed with HIV yourself some time ago. Why did you decide to go into this line of work at a time HIV was still seen as this big scary monster?

Gary : So when I was diagnosed 27 years ago I was given 5 years to live and I accessed some support services. I was very uncomfortable, I found the nature of those services really problematic. It was very much about how you supported people to die and to die well and I was very determined that I wasn't going to die. There's a very fine line between healthy living…

Adele : So somebody had already decided basically that you were going to live for 5 years and not discussed the fact that you might live longer? It was you that had to do that for yourself?

Gary : Well that was the average. I asked what the prognosis was and he said 'ah 5 years? A couple of years of deteriorating health and you know within 5 years you'll probably be dead'. And I was 23 at the time in college. So I went to get support and there were just people very, very sick sitting around having lunch waiting for bingo and I just thought this is not what I want. I need to do something very different. For me knowledge is what I wanted. Knowledge is power so I started reading research so back in those days that meant getting magazines and newsletters because there was no internet – I feel so old when I say that. And so I got information from America about the characteristics of somebody that survived more than 5 years so from peer support organisations there was that information available as to what people did to stay well longer. It was all about personal empowerment, engagement, refusing medication at the time because the treatment was imperfect it was just being trialled, so patients were guinea pigs so I just decided I need to find out what I can, engage with people that are of the same perspective as I have and see how I fight this and see how I live with HIV instead of die of it.

Adele: The change, and obviously you look amazing, you look so fit and you're not 23 anymore, this is an incredible story, is it the drugs, is it your personal attitude because you are so positive and strong mentally or is it a combination of both?

Gary : I think my personal attitude got me to the point of being able to survive until the drugs became available in '97 which is when I started. So I had an AIDs diagnosis in '95, I was on chemotherapy for 2 years because I had one of the HIV related cancers, and so I was very, very ill but I just wasn't willing to die yet. So when treatment did become available and it was effective I took it and made that slow process of recovery, and really as I got better then the combination of medication, a really proactive and positive attitude, and the recognition of how much I'd benefited from the support and the engagement that I had made me think what do I do now and that's when I came into the HIV support work, as a provider rather than somebody accessing support.

Adele : And that's how you know peer to peer is so powerful.

Gary : Yeah, I mean I was supported through those years of ill health by my peers in different workshops and recovery groups in order to learn how to live because I was diagnosed at 23 and didn't have a clue about myself in any way. The diagnosis was a wakeup call for me to think about where I was at and what had gone wrong clearly.

Hilary: Do you feel people's attitudes towards HIV have changed since when you were diagnosed.

Gary : Lots have changed, we're in a place where you've got a combination of two extremes. There's a group of people that still have that thought process where HIV means AIDs and death and then you've got another generation that thinks 'oh well there's a cure for that now, somebody just takes pills or an injection and it's all sorted'. The difficulty it is that we live in that grey area in between. It's much closer to the cure, the jab, the pills, than the death which is the great part of it but I think the nuanced perspective is still something that most people don't understand, even in the gay community where you expect a greater level of knowledge there's a huge amount of ignorance still.

Hilary: Having lived with this for such a long period of time how has it effected your relationships?

Gary : Well when I was diagnosed I was dating somebody and I got the diagnosis and went on a fourth date and at the dinner the next night I said hey I've got this test back and it's positive and he said 'oh wow I don't know what to do with that… I don't know how to cope we've just started seeing each other. I really like you but I can't begin to think about forming a relationship with you knowing that you're going to get sick' and I said 'no I understand that that's fair enough' and I left. I didn't have my dinner and I never saw him again and I thought well that's how it's going to be from now on. It was only really within the next few years after a period of deciding okay well I just can't have sex, I'll never have sex again because I was so afraid of passing HIV on, even with the thought of condom use it was too terrifying. As that changed and as I started to get more information and become adjusted to the diagnosis I met other people with HIV and so I got into relationships with people with HIV and then once I was on medication with people who were HIV negative and HIV positive, and really I guess just because of the fact that I'd always been open about my status and I knew that I was not ashamed of the fact that I'd had it – I'd had sex, anybody I was going to be dating had also had sex – so I didn't have a judgement about that. It was a mistake, but it was a mistake that we all make not to use a condom sometimes.

Adele : When you put it like that you just had sex that's all you did.

Gary : Yeah. On the rare occasions that I got a judgement from that I'd bat it straight back at them and say 'well did you ever have sex without a condom? Well then you're at risk of having HIV. When did you last test?' That kind of perspective and attitude helped me navigate relationships much more easily. I'm in a great relationship now with a wonderful man and you know I couldn't ask for more.

Adele: It's great to see you smiling, beaming and he's a lucky guy! And just thefantastic work at Positively UK and providing a life line for people who really need it. We'll be speaking to somebody who has used that support very shortly.

Voice Over: Sex talk. Coming up on this episode of sex talk:

Leasuwanna: My partner at the time, I found out he knew but he hadn't informed me.

Adele : Oh gosh. So you had to deal with that as well.

Hilary : Did it make you angry?

Leasuwanna : Yeah, I was very, very angry and because I hadn't been in any other relationships over the last 3 years, I'd been tested before, I was able to say I know who gave it to me, where I got it, when I got it, and I kind of think he already knows.

Adele: Gary's got to go soon. Before Gary goes can we play our game with him?

Hilary: Gary are you up for it?

Gary : Yep, tentatively.

Voice Over: Sex talk. Word porn.

Adele : Okay so Gary I have a dictionary of sex here, you just need to give me a letter I'm going to look through the pages of this and enjoy it and then I'm going to read out a word and I'm going to give you that word and you just need to guess what it means.

Gary : Okay then I'll go for the letter C.

Adele : Okay why C?

Gary : I don't know just the first that came to mind.

Adele : Okay interesting. Callomania.

Gary : Could you spell it?

Adele : Yes. Only because I've got it in front of me. Callomania.

Hilary: Gary don't get it mistaken for calamari. What do you think that would be?

Gary : A fetish for sex workers? Calle is Spanish for street, it was a tentative link.

Hilary: You didn't tell me you spoke Spanish.

Adele : I was thinking is it Susan Calman who was on Strictly? I thought it was a love of Susan Calman.

Hilary: Where did you get that from?

Gary : And what's the answer?

Adele : I do love her. Callomania, a pathological delusion of having extraordinary personal beauty. So it's a love of something.

Hilary: It sounds like vanity, or is it just a love of something?

Adele : People that love themselves. Do you know any collamaniacs? name and shame go.

Gary : I thought narcissism myself, that's the easier one to go with, but no, no none of course.

Voice Over: Word porn

Adele : Gary thank you so much for joining us and congratulations on all of your success and Positively UK you sound like such a great foundation and you do what you say on the tin.

Gary : Thank you.

Voice Over: You're listening to sex talk. Find out more by going to sextalk.radio and share your thoughts across social media using hashtag #SexTalkPod.

Hilary: Around one third of people living with HIV in the UK are women, and a quarter of all new HIV diagnoses are in women.

Adele: The biggest killer of women aged 15 to 49 on earth is HIV, and the only time women are routinely screened for HIV in the UK is if they access maternity services.

Hilary: That's incredible. So what if the woman doesn't want to have a child?

Adele : That is the only time, so I've never got pregnant so I've never been screened. Wow.

Hilary: So we've got things for cervical cancer which women have to get tested, a smear test?

Adele : Yes I get offered smear tests all the time but me and my friends who are sexually active, we've never been offered this service and I think that's something that needs to be addressed.

Hilary: Definitely.

Voice over: Sex talk. -

Hilary: Joining us in the studio now is Leasuwanna, who has been trained as a peer support worker by Positively UK. Welcome to Sex Talk Leasuwanna!

Leasuwanna : Hello.

Hilary: The room brightened up as soon as you came in.

Leasuwanna: thank you!

Adele: Lovely to meet you, when did your journey with Positively UK begin?

Leasuwanna : It began I'd say about 13 years ago. It was originally called Positively Women and I didn't find out about the organisation until I left London and moved back to my hometown of Bedford and from then I've always tried to be active with them, volunteering, accessing whatever opportunities that they have.

Hilary: You were diagnosed 15 years ago, can you talk us through this time in your life?

Leasuwanna : I accessed a HIV test when I was pregnant but I had already been taking regular tests. The problem was that I wasn't getting my partners tested. So when I found out I was pregnant, because we stopped using protection to have a baby, on about the third month I did a blood test and routinely they asked if I would like to add the HIV and I said yes. Then I received a letter saying there was something wrong with my blood. I instantly knew that it was HIV because I wasn't anaemic and I didn't have sickle-cell so that was the only thing I could think of and I went back to the hospital for an appointment and they told me.

Adele: That sounds – the way you recount it, is like they're ticking boxes, 'would you like this?' 'Yes I'd like it.' 'Okay' and they send you the results. Was there much support because it doesn't sound like from what you're saying there was enough support there for you?

Leasuwanna : No. There wasn't enough support. At the time most of the organisations were geared towards gay men. And I was, well am, a British black Caribbean woman who was pregnant and kind of in limbo because I had no clue what was available to me, what kind of support I would need, so I just carried on as normal because I already had a child and this was going to be my second and focussed on being a mother.

Adele: Wow all those things spinning round in your head so not only are you having to deal with this diagnosis, the fact that you're pregnant, the fact you already have another child and the information going your way wasn't enough.

Hilary: And having to give that information to your partner as well at the time.

Leasuwanna : My partner at the time, I found out he knew but he hadn't informed me.

Adele: And again you didn't have support in terms of that as well because mentally that must be a lot to deal with.

Leasuwanna : I don't know what happened when I was pregnant but I didn't like him. My hormones made me not want to be around him so we broke up and until I had the baby was the next time I spoke to him.

Adele: And having to deal with that as well.

Hilary: Did it make you angry?

Leasuwanna : Yeah. I was very, very angry, because at the time the way when you're told one of the first questions is do we have to contact anybody else so how many partners have you had? I basically got slut shamed straight away and because I hadn't been in any other relationships over the past 3 years I'd been tested before I was able to say I know who gave it to me, where I got it, when I got it and I kind of think he already knows. It later came about that he was literally in the same hospital where I was being diagnosed recovering from AIDs.

Adele: So he was getting treatment at the same hospital that you were at?

Leasuwanna : Yeah doing my maternity, having a baby. I told my mum literally the day I found out. I decided I wanted to be open about it. I did have knowledge about HIV and knew that I could continue my life, take medication, but my family decided that I shouldn't be as open as I was being and locked me down and said keep it within the family.

Adele: But you're here now? Which is brilliant. So you decided to go against that and you've been a strong person and you are now helping people that would have been you 15 years ago and I feel like you've probably helped changed the way people are treated when they now find out.

Hilary: You're working now with Positively UK, could you tell us a bit more about that?

Leasuwanna : I am a peer mentor. With the peer mentoring I've mentored women over the phone and one of the last ones that I did she found out that she was HIV positive when she was pregnant, and she was trying to make the decision of whether to breastfeed or not and I advised her on the pros and cons of breastfeeding because I also volunteer as a maternity mate. So if you're vulnerable and on your own and don't have someone to be there when you give birth I go along. So from that I have so much information on breastfeeding and childcare and just rearing a child in general plus my own knowledge of raising 2 kids and breastfeeding myself.

Adele: It's great to hear that you're there emotionally for these women and like you said women that are like you. It's brilliant to have somebody that has walked in their shoes. Listening to them, how rewarding is that? It must feel amazing.

Leasuwanna : When they turn around and tell you what steps they've taken, what decisions they've made about their lives, I feel amazing. Empowering someone else to take control of a situation that is very very hard makes me feel good and because it's still making me realise there is a lot to be done concerning women and the stigma of HIV. But it shows that we can and will eventually get to where we need to be. I don't think people actually are having the best education when it comes to HIV. It's not in schools, the information online isn't detailed and correct. The main thing I will say is U equals U is a campaign to let you know that the people who know their status are currently they ones that are the safest because they're already on medication, they know their status, some are undetectable and once you're undetectable you can lead a normal life but it's the ones that don't know their status that really causes the issue and there are ways to make this stop. It is just trying to get these actions done.

Adele: You're only one woman, I feel like we need to multiply you, put you everywhere in the UK. So what can be done, is it more funding, better education like you said in schools?

Leasuwanna : It's basically three things. Educate the kids from young, sex education. Number two would be routine testing for everybody.

Adele: Not just women when they're pregnant.

Leasuwanna : Yeah, standard. And three, just make sure that there's a massive campaign, not just one day a year about HIV. Everyone still thinks of the tombstone advert and the letters coming through their door and the narrative needs to be changed.

Adele: Needs to evolve and reach people on different platforms, maybe social media can do a bit more along with TV along with radio along with print media.

Leasuwanna : Yeah because they have little snippets of EastEnders and Emmerdale but it's not really pushing that this is something that shouldn't be ignored but isn't that big a deal anymore. When someone says to me no I don't need to be tested I say do you know what the H stands for in HIV? They're like what? Human. Every single human being can be effected by this and 50% of the time they will test because of that sentence.

Hilary: I like that.

Adele: So it's wonderful to see you so blooming today and I feel like you're in a really good place in your life so can you talk about where you're at right now, the positive side?

Leasuwanna : The positive side. I do peer support, I volunteer, but I'm also a mother of two wonderful kids. My son's in university now and my daughter's just going through her GCSEs, that was the child that was born and she's negative. My kids both know that I have HIV and what I do and it's normal for them. It's nothing. But I also have a partner who is negative and very supportive and it just shows that you can have whatever you want. I always advocate to the women that you can have the sex you want, you don't just have to settle for – I don't know how to say it politely…

Adele: Don't be polite that's fine.

Leasuwanna : So just average dick. You can tell them when you want, show them what pleasures you, have toys and gels and lubes and anything that you want in the bedroom, as long as it makes you happy and you don't have to always allow the man to be in control and I think this is where women are getting HIV and sexually transmitted infections because they don't know how to negotiate in the bedroom and it's condom negotiation. You wouldn't be able to go into a country without a passport so why are you allowing someone to enter your body without any good checks?

Adele: You've changed me so much now. This is it I'm a whole new person. That's a really good point I think we as women, because we don't wear the condom we almost feel like it's totally up to the male and it's not. We are allowed to have a say in this conversation.

Leasuwanna : We're 50% of what happens and there is female condoms so you don't have to let them have all the control.

Adele: I didn't know that, so there's another thing I know, thank you.

Hilary: So do you get regularly tested between yourself and your partner now?

Leasuwanna : Yes. He gets tested once a year. I get tested once a year but I try to go twice a year to make sure.

Adele: Is that a good practice to do, say you're in a relationship you're monogamous is it still good practice to have regular testing?

Leasuwanna : Yes. It's not that you're thinking your partner's cheating on you, but most relationships someone might slip up or do something, it's just to keep that peace of mind that everything is how it's supposed to be.

Hilary: Thank you so much for talking to us today about HIV and giving us all this great insight. Before you go I'd be wondering if you'd be up for playing a bit of a game with the both of us in the studio is that okay?

Leasuwanna : Yep that's fine.

Hilary: Fantastic so it's time once again for that fanfare… It's word porn.

Voice Over: Word Porn.

Adele: So you pick a letter and we delve into this wonderful dictionary of sex and find a word, and tell you the word and you have to try and guess what it means. I feel like you're going to smash this game.

Hilary: Especially because you know so much.

Adele: You're like an oracle. So the letter is…

Leasuwanna : L.

Hilary: Scrolling through the book looking for L okay. Okay. Loaded ship.

Leasuwanna : Loaded ship.

Hilary: What do you think that is?

Adele: You can ask for clues.

Leasuwanna : Okay, is it towards the male?

Adele: No.

Leasuwanna : Oh is it a position?

Adele: Kind of, when you're blooming and as a lady when you're…

Hilary: You've had this experience.

Leasuwanna : Sex while you're pregnant?

Hilary: Yes! Absolutely, so an old term referring to coitus during pregnancy.

Adele: Passed with flying colours! Thank you so much for playing and please don't not come back because we just played that game with you.

Leasuwanna : I actually really enjoyed it, I'm still petrified but I really did like this.

Adele: You're wonderful thank you so much.

• --Sex talk, word porn. -

Adele: Unfortunately, we've come to the end of the final episode of the first series of Sex Talk!

Hilary: I'm sad Adele.

Adele: I'm going to miss you!

Hilary: I'm going to miss you too! It's only for a month but we'll be back.

Adele: With the book.

Hilary: With two books.

Adele: We've got a his and hers sex dictionary. Let's try and explain that to our partners.

Hilary: Yes I'll say Adele gave it to me. What an episode to end on! Thank you so much to today's guests, Garry and Leasuwanna, you have been amazing, and such good sports for joining in with Word Porn!

Adele: We're going to go on a short series break, but we'll be back in June with some more amazing guests and fascinating discussions about sex! If you'd like to find out more about Sex Talk you can visit our website, sextalk.radio and if you've not already please do subscribe so you'll be the first to know when the second series is released!

Hilary : You can also join in the conversation by using the hashtag #SexTalkPod

Voice over: Sex talk.

Adele: If you need further advice or support on any of the issues raised in this episode of Sex Talk contact your GP. They should provide out of hours contact details for emergency calls. Alternatively you can go online - www.nhs.co.uk - to find your nearest STI testing and treatment service. If you're concerned about HIV - Positively UK - can offer advice. Their helpline is open Monday to Friday 10am-4pm on 020 7713 0444.

Hilary: As always, stay safe, and keep talking and we'll be back again before you know it.

Voice Over: Thanks for listening to sex talk. The conversation doesn't stop here. Search hashtag sex talk pod and keep talking. Sex talk.