Episode 12: Growing up with HIV


Sex Talk Episode 12- Growing up with HIV

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Horcelie: So I was 11 years old, but it all started when I was 10 years old my mum was giving me medications every day before I went to school, she told me that it was vitamins. As young as I was I didn't really know so much about HIV but I knew a little bit about it based on heresy, based on what people say in a Congolese community so at that age I just knew that okay am I going to die and do I have AIDS?

Voice Over: Sex talk.

Adele : Hello and welcome to Sex Talk! If you're new to Sex Talk, this is a podcast all about Sex presented by me, Adele Roberts,

Hilary : And me Hilary Ineomo-Marcus

Adele: On Sex Talk so far we've learnt loads of things about sex that we didn't know, from how different STI's can be spread, to what PrEP is. You'd have heard us chat to lots of people about HIV in series one. If you haven't heard our previous episodes, make sure you subscribe to the podcast so you can go back through the archive.

Hilary : Generally, when we've talked about HIV on Sex Talk, it has been about HIV being passed on through sex. However, HIV can also be passed on from mother to baby during pregnancy, child birth and breast feeding. This is known as 'Vertical Transmission'

Adele : In the UK very few babies are now born with HIV. 99.9% of babies born to mothers with HIV do not get infected, as long as the mother is on effective medication. The majority of people living in the UK who are living in the UK who contracted HIV through vertical transmission were born abroad.

Hilary : During pregnancy a HIV test is offered in the UK, and in 2015, 98% of pregnant women were screened for HIV; 720,590 women. Of those screened, 1,082 tested positive for the virus. These tests are vital in making sure pregnant women with undiagnosed HIV start taking medication during pregnancy so they can't pass on the virus to their unborn child. We will be focusing having children when you're HIV positive in another episode of Sex Talk.

Adele : Today we're going to be joined by Horcelie, who was diagnosed with HIV as a child.

Hilary : We'll also be hearing from Abi who works for a Children's HIV Charity, CHIVA.

Adele : There are currently just under 1000 children under 18 living with HIV in the UK,

Hilary : We're now joined in the studio by Horcelie, a 23 year old woman who was born in Congo. Welcome to Sex Talk Horcelie!

Horcelie : Thank you.

Adele : Horcelie, thank you so much for coming into the studio to talk to us today on Sex Talk. Could you tell us a little bit about your childhood and how old you were when you moved to the UK?

Horcelie : So I was 9 years old when I moved to the UK so in 2004, and I didn't know a word of English because I came from the Congo so we only spoke French and Lingala. So I learned everything from scratch.

Hilary : Wow we would't have been able to tell.

Horcelie : I did a lot of reading

Hilary : Well you sound better than me!

Adele: I know, me too! And you speak three languages?

Horcelie : Yeah.

Hilary : Incredible. Right, so how old were you when you found out you had HIV, and what was your initial reaction?

Horcelie : So I was 11 years old, but it all started when I was 10 years old my mum was giving me medications every day before I went to school, so I would take them and I didn't know what it was for… she told me that it was vitamins. Then one day we went to the doctors again and this time the nurse took me in and she started speaking to me about what HIV is and what it does to the body and what AIDS is. As young as I was I didn't really know so much about HIV but I knew a little bit about it based on hearsay, based on what people say in a Congolese community, but basically what people say is HIV and AIDS are the same thing, so at that age I just knew that okay am I going to die? Snd do I have AIDS? So what is it? So basically that's when I found out.

Adele : That is a lot to deal with.

Hilary : Absolutely. where you scared?

Horcelie : In a way yes I was scared, but because my mum was there, my family was there they were very supportive so it was easing the pain in a way.

Adele: So we know that your mum was there for you and supportive but what about, you know you just explained about going to see the nurse, do you think the support was there for you mentally and emotionally?

Horcelie : I'm not sure. Because I was so young. I think throughout the years because I've had the same nurse throughout the years yes, she has been very supportive throughout the years but that day in that moment I don't think I felt her support so much. I felt like she was being professional and she was doing her job. She had no choice but to deliver it to me in that sense but throughout the years she has been supportive yeah.

Hilary : Were there people when you were growing up that you could speak to about your diagnosis?

Horcelie : No there was no one at all. No one. Because don't forget in school you don't really get taught about HIV. No one really knows what HIV is. I do remember telling my best friend at the time – we're still best friends now – we were 12 years old and she had no idea what it was. It wasn't until we turned 18 that's when she started to understand. So all that 6 years she had no idea what it was, so I didn't tell anyone and I couldn't tell anyone.

Adele : So it was just your friend who was 12?

Horcelie : We were both 12 years old yeah.

Hilary : How did that impact how you made friends in school?

Horcelie : I'm a very confident person so you can't really tell unless you know me that something is wrong. So it wasn't something that I isolated myself from around my friends so I had many friends growing up, mostly African friends because we can relate to the same kind of conversation, I didn't feel isolated at all.

Adele: What about teachers?

Horcelie : No I didn't tell my teachers. I do remember I had to leave school before I was told I was HIV positive, I had to leave school, and after as well a couple of times, because at that time you had to go every three months for your check-ups and I do remember one day I think it was my citizenship teacher who asked me 'why are you always leaving class all the time?' and I said I need to go to my appointments but I didn't tell anyone.

Adele: And you're having to deal with citizenship as well so there's so many things you're having to go through. So what have been the main obstacles you have faced growing up with HIV compared to your friends, so you know your friend that you told when you were 12, how was it different for you?

Horcelie : I think it was different because in a way I felt like they, not necessarily they were ignorant but they were uneducated on what HIV is, so the difficulty was yes okay everyone is going through something in their lives, but with HIV it's different because HIV education is what comes with it if that makes sense, so you can't just deliver disclose your status and tell someone 'oh I'm HIV positive' because you don't know whether the person is educated on HIV, you don't know if they are ignorant, you don't know what they've heard about HIV so you're concerned and because I was young, let's say 13, 14 years old, in my head I just thought I'm sick, it's something different I have compared to my friends.

Hilary : You mentioned having to take on all this responsibility from a very young age and it comes across, you're an extremely confident woman, it definitely comes across so that's a massive congratulations to you, but how did you find taking your medication when you were younger?

Horcelie : It wasn't so much a big deal because I was taking three tablets a day. At first I was taking liquid because I was very young so I started taking three tablets a day and then eventually two tablets a day and now I think they've changed it to one tablet a day so that's because the medical research and all of that.

Adele : So so far you are smashing this. You are amazing- this is so good!

Hilary : It's like you brush it off your shoulder kind of thing.

Adele: You're a credit to your family. So now you get to the point where maybe you're interested in relationships, how do you deal with that?

Horcelie : The only difficult part I had when I was around 18 years old, telling someone that you like and again not knowing whether they're educated or know anything about HIV. It was slightly, no it wasn't slightly, it was very difficult at the time, but after winning the beauty pageant in 2017 last year, because now everyone in the community knows I'm HIV positive it's just like okay so she's HIV positive and I can just talk to anyone about it, I don't feel the need to always disclose my status everywhere I go if that makes sense.

Adele: Tell us about the beauty pageant.

Horcelie : I went to volunteer in South Africa for two months in 2016 so when I came back I joined a beauty pageant as a way if I did win to raise awareness about HIV and AIDS in the Congolese community and I worked extremely hard and I also when on tour with Youth Stop AIDS after winning the beauty pageant so I learned more about policy making and campaigning and learning more about HIV in terms of a global health issue.

Hilary : That's absolutely fantastic. You mentioned you're from the Congolese community, what is the mentality within the Congolese community, how prevalent is it as well?

Horcelie : It's very, it's such a poor mentality. And when I say poor mentality it's because of the country already and its instability in terms of education and health, so people just gather any kind of information that they hear and pass it on and it becomes the truth, even though it's not the truth. So it's to say that some parts of Congo, some people are not educated and I think around 65% of people in the Congo that are educated and have some form of education, so that's what makes it poor in a sense, because you can't just blame people for being ignorant if they've never been educated on the topic or on health issues that are happening in their country. So that mentality has been brought over here, those who live in the Diaspora, those who live in France, those who live in the UK, everywhere. So when someone is HIV positive instead of them comforting the person, they will spread the news and start gossiping and sadly it does happen and this is the reality even in 2018 people will commit suicide after that so the person's not going to go to the doctors. For example, I remember before everyone knew my status, before I was going to volunteer in South Africa I was doing fundraising so I went to visit a Congolese woman who lives nearby and I told her I'm going to South Africa to learn more about HIV and to educate young people and to learn more about poverty and youth development, and she said 'that's fantastic' and she said 'on the topic of HIV I had a friend of mine who was also HIV positive' and I was like, oh okay what happened? She said 'in the church everyone was gossiping and they were saying you have AIDS, you have AIDS, and your husband is sleeping around and you have AIDS…' so she said 'I told my friend you need to go and get tested because the way people are talking about you is embarrassing' and a couple of months or even weeks later the woman passed away of AIDS. And when she was telling me this story she said 'even I didn't help the situation because I could have been her support at that time, but because I didn't know much about HIV or AIDS myself I played a huge roles towards that stigma and towards her death'. So this is the reality of people today in the Congolese community.

Adele: What would you like to see happen, how would you like to see people change? If someone's listening to this podcast what things can we all do to be better?

Horcelie : The number one thing is education, it's to be educated. Anyone can contract HIV it doesn't chose your race, ethnicity, where you come from, where you live, what class you are and I think that's what I've learned through Youth Stop AIDS is learning about HIV or AIDS as a global health issue, because there are many people who are living with HIV everywhere. It's not just in Africa. And the association of HIV and black people and that's another thing, or African people, 'it's an African illness' and a lot of people forget that HIV can affect anybody, so I think the number one thing is to be educated and there are so many organisations that I've heard about and worked with, there's Terrance Higgins Trust, there's Youth Stop AIDS, there's Stop AIDS, there's CHIVA, there's so many and of course there's a few in the African community but I think it becomes a matter of choice. People don't necessarily want to learn about HIV. And to me… not just HIV, generally I think here in London people don't really care so much about their health and I think that's the problem, that's the issue. Although you have young people who come from school, who go to universities but you'd be surprised, they actually don't know much about health. Even women, young women as well. I was speaking as a panellist about women's health and cervical cancer and I was shocked myself at how I didn't even know much about this, because I wasn't taught about it in school and so it's just a lot and I think that's what it is. I don't know if I can use the word naïve but it's become normal to say 'oh yeah this happened so what, I'm fine I'm living I'm eating well', so I think that's what the issue is.

Adele: Thank you for being so visible and vocal because I think you're the start of the change. I think we can get better in schools, we can get better in terms of education but it's thanks to people like you just speaking your truth and also not being ashamed and understanding that this is something that can happen to anyone which is what you pointed out. It doesn't discriminate. I think that hopefully the rest of the world will get on board and start to understand that it's not what it used to be. That medication's got better, the world's moved on and you're just the same as everybody else. Well no she's not the same as everyone else, she's amazing. I wish I was you!

Hilary : A fantastic ambassador and you're one that truly uses your platform to get the message out there and literally in the few minutes that we've been speaking I've learned so much and I'm just in awe of your courage and wisdom, so thank you.

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Hilary : Still to come on this episode of Sex Talk, we'll be chatting to Abi Carter from the HIV charity CHIVA, about what they do to support children and young people growing up with HIV.

Adele : And we'll once again be joined by our resident sexual health specialist Dr Stuart Flanagan who will be busting another myth!

Hilary : Bur before that… Adele, you know what time it is right?

Adele : Word Porn!

  • -- Voice Over: Word Porn –

Hilary : Adele do you want to go?

Adele : Me pick a letter? Alright no problem.

Hilary : You're smarter than I am, you're a boffin.

Adele : Oh I'm not oh my god! Okay I pick a letter out that dictionary, you're going to give me a word and I have to try and guess what it is.

Hilary : She's looking at me very seductively this week… the cover of the book that is.

Adele: Yeah, not me!

Hilary : Adele, let's get into it.

Adele : I've got my game face on, I know you can't see this but I am ready to take you down.

Hilary : I'm trying to throw you off as well.

Adele : You're doing well! Let's go for the letter D please.

Hilary : Interesting, so I'm looking through the book and I'm finding a word for you Adele. The first that came to mind was going to be far too easy for your experienced mind. Right I think I've got one Adele. What's a dressing ring? I don't know why you're laughing!

Adele : Gosh okay a dressing ring…

Hilary : A fashion item…

Adele : Do they come in sizes, different sizes?

Hilary : Yes!

Adele : Okay and if I was going to go to the shop to buy a dressing ring would I want to try it on in the shop.

Hilary : You would not be able to try it on. Once you buy it you've got to keep it.

Adele : I'm thinking that a dressing ring is something that you might put on your singular finger that might exist between one's legs if you're a man.

Hilary : Yes.

Adele : It goes on your penis?

Hilary : Absolutely spot on.

Adele : What does it do though? I've heard legends of these so they put a ring around their penis at the bottom so it's kind of like a game that you'd play at the fairground. As a woman you get the ring and try and chuck it on and when it lands you're like yay but what happens next?

Hilary : I think it just keeps you rock hard.

Adele: Does it? So do you put it on before or after?

Hilary : Good question I've never tried it but I'll let you know next time! So the actual definition is it's a metal ring about one inch in diameter inserted through the glands or tip of the penis as a means of achieving greater sexual excitement during intercourse. Through the Victorian era the ring was also used to secure the organ in the right or left trouser leg, also called a Prince Albert.

Adele : Oh my gosh.

Hilary : So guys would wear it in order for the penis to stay in a particular position within their trousers.

Adele : They'd strap it to their leg? Did they not wear underpants?!

  • -- Voice Over: Sex talk. Word porn. -

Hilary : Today's episode of Sex Talk focuses on growing up with HIV. So far we've heard from Horcelie, a 23 year old woman who was told she had HIV at the age of 11, after contracting it through Vertical Transmission, which is where the virus is passed on from mother to baby.

Adele : There are currently just under 1000 children living with HIV in the UK

Hilary : Joining us on the line is Abi Carter, a Participation Officer for CHIVA, a charity supporting children and young people living with HIV in the UK.

Adele : Welcome to Sex Talk Abi!

Abi : Hi.

Adele : Hi. Thank you so much for joining us, can you start by telling us a little bit about CHIVA? What is it that do you do?

Abi : Yes, CHIVA is the children's HIV association for the UK and Ireland and we support children and young people growing up with HIV. We educate them about living well with HIV, we provide them with peer support opportunities for them to meet other people like them, we work with young people and their families when they're in a crisis and we provide support and guidance in clinics who are working with children and young people living with HIV.

Hilary : What are some of the common issues young people living with HIV face that perhaps those without the virus do not?

Abi : One of the main struggles for young people living with HIV is isolation. So because children and young people born with HIV in the UK is a very small group, there's only about 1000 living in the UK at the moment accessing treatment through clinics so they're very isolated and they feel often when they get told about their HIV they feel like there's nobody else in the same situation as them and then they also have additional needs that come for anyone living with HIV because of the stigma that still exists in the UK about HIV, the misunderstanding. And then there's other misunderstandings like poor mental health. Although most live well with HIV and have medication that keeps the virus under control some have additional physical needs that are related to their HIV. Many of the young people who we work with live in poverty have problems with their immigration status and have also suffered family bereavement so it's a very long list of lots of different issues that are going on for a teenager with HIV in the UK.

Adele : Such a delicate thing that you have to deal with and as you say the amount of issues those young people have to take on board so with that in mind, when are most children told they have HIV and what support is there?

Abi : Well we've been doing some work on this recently with clinics around the country. Children and young people are generally told about their HIV at around the age of 10. We actually think that this should be a bit younger. We think HIV should be talked about with them more openly from a younger age otherwise it becomes this huge secret that gets told to them, something that you're living with but you can't tell anyone else, you can't talk about it but don't worry about it. In reality that doesn't happen. If somebody gets told you can't talk about this or keep it a secret they automatically start to think of it as a negative thing, and if they're not in a situation in their family where it's not something that can be talked about openly, and if it's also not being talked openly about in clinics then it becomes more and more negative or more and more negativity can be attached to it. So there are places where young people are very well supported particularly in London or Manchester where there's more people living with HIV and there's bigger clinics but in a lot of cases they're unfortunately not very supportive and it's quite a big thing to deal with at quite a young age.

Adele: Yeah 10 seems young anyway but now you've explained I understand why even younger would be better. Do you think it would beneficial for children who don't suffer from HIV to also be told about it?

Abi : Yes absolutely, it's something that I think we can talk about generally more widely with all children and young people but because of the connection with sex people think we can't talk about sex with children or in primary schools so don't want to talk about HIV. There's some really interesting work that's been done in Sweden and they never keep it a secret, from the very beginning they talk about HIV very openly and they've found it has that transformative effect on the families and how they cope with their HIV.

Hilary : Abi, Sex Education in schools isn't really geared towards children with HIV, does CHIVA support young people who might be starting to think about sexual relationships?

Abi : Yeah absolutely. All our work when we run residential and all our peer support work we have sexual health sessions where young people can ask questions and look at doing things like condom demonstrations and learn more about how to have a healthy sex life and we spend a lot of time talking about this in all the work that we do.

Adele: What about when someone reaches the age of 18 and starts accessing adult services are they treated differently?

Abi : When they transition to adult services you're right it's usually around the age of 18, that can be really difficult because suddenly it might be presumed that they have a lot more independence with taking their medicine or remembering to go to their appointments or all the other aspects of going to a clinic in the NHS and the other challenging part is often the adult clinics don't understand the particular circumstances for children and young people who have grown up with HIV and so they're treating other people that have acquired HIV in their adult life and the circumstances for a child or young person growing up with HIV is really different, and there's the whole family part of this condition as well.

Hilary : How do you at CHIVA support young people living with HIV,how do they benefit from CHIVA's support?

Abi : Well the young people that we've worked with over the years, over the 10 years now, tell us that meeting other young people with HIV like them is life changing. They feel free, they feel part of a community, suddenly everything makes sense, they make friends for life who they can call on when they need to for support. It's like their own second family and there's nothing that makes us happier than hearing stories about young people that have attended our residentials years ago and are now all going on holiday together, or some of them live in a house share together and they've taken that support that they've gained through meeting each other and made it part of their life, but I do understand that there are young people that can't come on our residential or we meet them in clinics and they don't feel able to take that step, and it can be very daunting and it can also be very hard if their family don't want them to and that's holding them back, or if their family because of confidentiality or trust they don't feel they can let them come away with another group of people. So we understand how it's difficult and that's why we broadened our work to include things that are just for the day or an afternoon and not always for the night.

Adele: It's wonderful to hear the range of facilities you provide for young people. CHIVA received a lot of publicity recently, can you tell us about that?

Abi : Yeah we were extremely fortunate to be selected as one of the Royal Wedding charities that Harry and Meghan Markle chose for people to donate to rather than give them a wedding present so it's been incredible, we've had a lot of interest in our work, we've had people donating, we've had things gifted to us. There's only four of us who work at CHIVA and we're all part time so it's been a pretty manic month but it's also been pretty exciting.

Hilary : Congratulations.

Adele: What sorts of things have you received? Can you share?

Abi : We've been given a Mini Cooper, a special customised Royal Wedding one with a particular design that's connected to Prince Harry and Meghan Markle and we're going to be auctioning that, and we've also – all the charities together as a group have been gifted some really incredible miniature art works, basically a miniature instillation in the eye of a needle and a miniature etching on a pin head, and they're going to be auctioned as a package for all of the seven charities.

Hilary : Fantastic, congratulations. You deserve it.

Adele :That's incredible! Abi, thank you so much for taking the time to speak to us today about CHIVA. We can hear in your voice, me and Hilary are just smiling at each other as you're talking because we can hear how much it means to you so keep up the fantastic work and for those who would like to find out more or want to get in touch, what can they do?

Abi : Well we've got quite an active Twitter account so they can find us @CHIVAprojects and then also our website, www.CHIVA.org.uk

Hilary: Fantastic,Abi, thank you so much for joining us today on Sex Talk, and keep up the amazing work with the massive, massive heart that you have! Thank you.

Abi : No worries thanks a lot!

Adele : Unfortunately we're nearly out of time on this episode of Sex Talk. Before we go, it's time to bust another myth with Dr Stuart!

  • -- Voice Over: Myth busters with Dr Stuart Flanagan. –

Hilary : So every week on sex talk we get sexual health and HIV specialist Dr Stuart in the studio to bust a common sexual health myth. Hello again Dr Stuart.

Dr Stuart : Hi Hilary.

Hilary : How are you sir?

Dr Stuart : I'm really good thank you I'm looking forward to hearing what this week's myth is.

Hilary : This episode's myth is STIs go away on their own. Now you work in a sexual health clinic so you must hear all of these myths. What do you think the public's response was to this question – true or false?

Dr Stuart : I think the public are pretty smart and I think they will get it right.

Hilary : Right well let's hear what some of the people I bumped into had to say.

STIs go away on their own, true or false?









H: General consensus I like that. Adele what do you think?

A: Sounds like they were speaking from experience some of them and I think they're right, I think it's false.

H: Fantastic, another unanimous verdict of false there, but Dr Stuart although the people were pretty clued up who I spoke to, some people do think that some STIs will clear up on their own. What's the truth behind this myth?

Dr Stuart : So my answer would be mostly false. For the vast majority of STIs yes that's correct that they don't go away on their own, they will need some treatment, they will need some management to be cleared and that will be things like chlamydia and gonorrhea. The problem with those is they can hang around for quite a while and the symptoms may go away but the infection remains and if it's been there for a while then it can cause problems with pain when you pee. It can cause abdominal pain, it can even cause fertility problems in the future, but there are some STIs that can self-clear potentially and that could be for example HPV, the virus that causes warts, so some people will clear that virus in a time period where they wouldn't pass it onto someone else. Sometimes you can have for example chlamydia in the throat or gonnorhea in the throat which may clear after a few months and if you don't pass it onto someone else then it may go, but the vast majority of STIs will need treatment and will need check-up and that's even if your symptoms have gone the infection will remain.

Hilary : Wow that's great to know thanks Dr Stuart for clearing that one up for us.

  • -- Voice Over: Myth Busters. -

Adele : Unfortunately that's all we've got time for on this edition of Sex Talk. If you have been effected by any of the issues discussed in this programme, peer led support is available through Positively UK, Their helpline is open Monday to Friday 10am-4pm on 020 7713 0444.

HIlary: You can also contact your GP. They should provide out of hours contact details for emergency calls.

Adele: Alternatively you can go online - www.nhs.co.uk - to find your nearest STI testing and treatment service.

Hilary : Don't forget to subscribe to our podcast to keep up to date with the latest episodes, and to follow us on Twitter, we're @sextalkradiouk

Adele : You can join in the conversation using #SexTalkPod

Hilary : We'd like to thank today's guests, Horcelie and Abi. In the next edition of Sex Talk we'll be talking all about sexual problems.

Adele : Until next time Stay safe

Hilary : And keep talking.

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

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