Speaker 1: You're listening to a MoMA Mia podcast. Mamma Maya acknowledges
Speaker 1: the traditional owners of land and waters that this podcast
Speaker 1: is recorded on.
Speaker 2: I barely sat down by the time a nurse and
Speaker 2: pulled my name to go into a room. And we
Speaker 2: had to walk down quite a long corridor for us
Speaker 2: to get to the room we were going to, and
Speaker 2: she kept looking back at me, and you know, it's
Speaker 2: that look where you're like, Oh, I know she's about
Speaker 2: to tell me something bad. She knows it too, and
Speaker 2: we're both just looking at each other, like Oh.
Speaker 3: Ellie Harrison, like a lot of us, at twenty one,
Speaker 3: was having fun. She was working in fashion, studying, going
Speaker 3: out partying with her friends, and she had a boyfriend
Speaker 3: who we can't name for reasons you'll hear soon. Ellie
Speaker 3: had been with her boyfriend for about a year when
Speaker 3: she decided to get a routine STI test to be
Speaker 3: a responsible near adult. The results changed her life. Ellie
Speaker 3: was diagnosed with HIV three letters that sent her into
Speaker 3: a panic. What did this mean, would she survive? And
Speaker 3: of course, how did she get it. Ellie's life is
Speaker 3: divided between before HIV and after HIV. So we started
Speaker 3: in the before times. Ellie Harrison, Welcome to No Filter.
Speaker 3: Thanks for having me in thinking about you and the
Speaker 3: story that you're about to share with us.
Speaker 1: I think that.
Speaker 3: Sometimes in life, when seismic and cataclysmic things happen, you
Speaker 3: tend to see your life as like a before and
Speaker 3: an after.
Speaker 2: It before and after.
Speaker 1: Right, what was your before?
Speaker 3: Tell us where you were in twenty eighteen and what
Speaker 3: itly looked like then.
Speaker 2: So I was twenty one at the time. I was
Speaker 2: still studying at university. So my university, the way it
Speaker 2: worked is you do two year studying, you do one
Speaker 2: year away and a placement year at work, and then
Speaker 2: you come back for your final year. I had just
Speaker 2: finished my placement year. I was working in London. It
Speaker 2: was like really fun. I worked at a huge fashion company.
Speaker 2: I was having like the time of my life, and
Speaker 2: then this kind of all unraveled. Probably the best point
Speaker 2: I've ever been in my life. It just kind of
Speaker 2: fell apart from them.
Speaker 1: What happened when it fell apart.
Speaker 2: So I'd been in a relationship for just over a year.
Speaker 2: Because I'd moved to London to study. I then moved
Speaker 2: back to Birmingham to finish my university degree, and I'd
Speaker 2: made the decision because it was a long distance relationship
Speaker 2: that I wanted to get tested. I didn't think my
Speaker 2: relationship can go the distance, and I thought it's safe
Speaker 2: to get tested, and I just ordered a routine home
Speaker 2: SDI test. Didn't for any reason. I'd no symptoms, didn't
Speaker 2: imagine anything was going to happen. It was just a
Speaker 2: precautionary measure. And then I was diagnosed as HIV.
Speaker 1: Positive from your at home taste. Yeah, and what was
Speaker 1: the at home taste?
Speaker 3: Was it a leak taste or a saliva taste or
Speaker 3: how do you do it?
Speaker 2: So it tested for every single STI So there's two
Speaker 2: swamps you do one for the throat, one for downstairs,
Speaker 2: and then you aught to do a blood sample. So
Speaker 2: I'd done all of these tests center off obviously expected
Speaker 2: it to come back completely clear, and it didn't. This
Speaker 2: was back in twenty eighteen, and I think maybe the
Speaker 2: education in especially in the UK, for sexual health wasn't
Speaker 2: as good as it should have been. I got a
Speaker 2: text to say I needed to come back into the clinic.
Speaker 2: I had gone back in and my immediate thought was
Speaker 2: I've got chlamydia or I've got gonorrhea, some kind of
Speaker 2: lesser SDI. It wasn't until I walked into the clinic
Speaker 2: they explained that the test that had come back as
Speaker 2: reactive was HIV. At that point, the nurse advised me
Speaker 2: it was highly likely it was a false positive and
Speaker 2: I had nothing to worry about. I'd been in a
Speaker 2: long term relationship, I had tested negative literally a year
Speaker 2: prior before I met my boyfriend, and I had nothing
Speaker 2: to be concerned about. So I left that appointment kind
Speaker 2: of thinking it's a clerical error, maybe the bloods were
Speaker 2: mixed up or something went wrong. And I then about
Speaker 2: a week after that, got a call to say could
Speaker 2: you come in immediately? And I was like, well, how
Speaker 2: soon as immediately? And they were like now right.
Speaker 1: And in that moment, did you know.
Speaker 2: Yeah, I had only been retested for one thing. So
Speaker 2: I'd been retested for HIV and nothing else. And at
Speaker 2: the point they said come back in, it was pretty
Speaker 2: clear cut to me that the only thing that was
Speaker 2: going to be coming back was that as a positive.
Speaker 2: I panicked and I cried, and I was like I
Speaker 2: don't know what to do, Like I don't know where
Speaker 2: to go, and I'm so fortunate. I have a fantastic
Speaker 2: relationship with my mum and dad, so I rang my
Speaker 2: my dad instantly to be like, I think this is
Speaker 2: about to happen to me. Could you come and sit
Speaker 2: with me?
Speaker 1: Where were you in that moment? Were you still in
Speaker 1: the clinic?
Speaker 2: I was at work, So I'd actually took a summer
Speaker 2: placement like a second internship, to basically work in Birmingham
Speaker 2: before I went back to UNI, and I had, I
Speaker 2: want to say about forty missed calls. I went on
Speaker 2: my lunch break, I didn't have my phone with me,
Speaker 2: and as soon as I got to my phone and
Speaker 2: I was like, oh, something has happened.
Speaker 3: Oh yes, and your first thought was to call your parents.
Speaker 2: That was your first call immediately Mom and Dad?
Speaker 1: Yeah, and what did you say in that fine call?
Speaker 2: So they were aware of the fact I'd had this
Speaker 2: false positive, so bless the hearts. They were actually at
Speaker 2: an eighties festival, so it's a Monday morning, they were
Speaker 2: about to head back home from a big weekend of drinking,
Speaker 2: and I'd called them and I was like, can you
Speaker 2: can you come to me? I think in the next
Speaker 2: hour or so I'm going to be told I'm HIV positive.
Speaker 2: Could you could you get here? My mom and dad
Speaker 2: are in choose live T shirts, violently hungover, and like,
Speaker 2: we will do what we can. We will be there.
Speaker 2: It's going to take us about four or five hours,
Speaker 2: but we will get to you.
Speaker 1: What did you do then?
Speaker 2: So I went back to work crying my eyes out,
Speaker 2: and I was like, look, I need to leave. I've
Speaker 2: got this doctor's appointment. At the time, I didn't really
Speaker 2: want to give away too much information, so I was like,
Speaker 2: I've just been called by the hospital. They say I
Speaker 2: need to come, and now got myself an uber. I
Speaker 2: arrived probably twenty thirty minutes early for the appointment, so
Speaker 2: I got a coffee and I just sat on a
Speaker 2: church bench and wasted.
Speaker 1: How were you mean to leading?
Speaker 2: I explain it to everyone, and I think it continued
Speaker 2: like this for months. But you know in Chicken Little
Speaker 2: where he says the sky is falling, That's what it
Speaker 2: felt like to me, that I was saying to everyone,
Speaker 2: the sky is falling, but no one else could see it,
Speaker 2: Like everyone's life was continuing normally, but to me, the
Speaker 2: sky had fallen in and no one was hearing me.
Speaker 2: Like desperately being like this is something bad is happening?
Speaker 3: I do, And was your intention to wait for your
Speaker 3: parents or did you after the church bench you went
Speaker 3: to the clinic.
Speaker 2: Went to the clinic on my own. I think in
Speaker 2: my head I expected it that when I walked into
Speaker 2: the clinic I'd be sat in this waiting room for
Speaker 2: like twenty thirty minutes, and I was like, God, it's
Speaker 2: going to be so daunting. It all actually happened quite quickly.
Speaker 2: So I went in, said my name, got took into
Speaker 2: a waiting room, and I barely sat down by the
Speaker 2: time a nurse had called my name to go into
Speaker 2: a room. And we had to walk down quite a
Speaker 2: long court corridor for us to get to the room
Speaker 2: we were going to, and she kept looking back at me,
Speaker 2: and you know, it's that look where you're like, oh,
Speaker 2: I know she's about to tell me something bad. She
Speaker 2: knows it too, and we're both just looking at each
Speaker 2: other like oh oh oh.
Speaker 3: And it's like with every step, were you like, I
Speaker 3: don't want to take the next step.
Speaker 1: How did they deliver the news to you?
Speaker 2: So for me it was one on one. She'd basically
Speaker 2: walked me into the room and before we have time
Speaker 2: to like shut the door behind us. I was like,
Speaker 2: just say it now, Like, just just say it. I
Speaker 2: was like, I just need you to say it. And
Speaker 2: she was like, look, calm down, like we can do
Speaker 2: this slowly, and I was like, no, I need this,
Speaker 2: I need to process. I need to go through this quickly.
Speaker 2: So she shut the door and went, I'm really sorry
Speaker 2: your HIV positive. Yeah. I then had about six or
Speaker 2: seven panic attacks, so they were quite concerned at that point.
Speaker 2: They kept trying to get me to lie down, and
Speaker 2: they were like, do you need us to call anyone?
Speaker 2: And I was like, I don't have so my best
Speaker 2: friend at the time, I had been wringing her constantly
Speaker 2: to be like come, come here, come here, but she
Speaker 2: worked nights, so she was fast to see. It was
Speaker 2: like ten o'clock in the morning, fine off, and I'm
Speaker 2: like desperately ringing me like, I was like, she will come.
Speaker 2: My parents are on the way. I was like, I
Speaker 2: just need someone to get me through like the next
Speaker 2: thirty minutes for my friend to wake up, and then
Speaker 2: we can like figure the rest of this out.
Speaker 1: What happened? Did you lie down for the thirty minutes?
Speaker 1: Were you?
Speaker 2: Yeah? The nurse was wonderful. So she laid me down
Speaker 2: and she basically started talking to me about like everything
Speaker 2: that hid and I don't think at that point in
Speaker 2: time nothing went in right. I was not listening to
Speaker 2: anything they were saying, but she was going through everything
Speaker 2: about this is the medication you can take, this is
Speaker 2: the life you can live. Everything's going to be okay.
Speaker 2: But all I'm doing is like fast tracking, being like
Speaker 2: I don't know what's going on. Am I going to die?
Speaker 2: What's going to happen? They asked me to wait at
Speaker 2: the clinic until someone could meet me. I refused that
Speaker 2: and I said, look, I just I need to get
Speaker 2: out of here. I really need some space. So after
Speaker 2: about forty five minutes of talking with her, they did
Speaker 2: let me leave. I then walked towards where my friend lived.
Speaker 2: She'd woken up in that time and she was like, look,
Speaker 2: I just need to jump in the shower and get
Speaker 2: some clothes on. I'll come meet you. And I sat
Speaker 2: on a canal in Birmingham with a can of Stella
Speaker 2: and twenty cigarettes and waited for someone to done up.
Speaker 1: Oh do you normally smoke?
Speaker 2: No? Oh?
Speaker 1: Oh wow?
Speaker 3: Well at that point you would have been like well,
Speaker 3: what are these health warnings?
Speaker 2: Yeah, I think my immediate con is I do not
Speaker 2: ever recall having any knowledge of HIV, so I don't
Speaker 2: remember being taught as well. I'm sure I probably was,
Speaker 2: but I don't have that memory. So I kind of
Speaker 2: had carried a lot of the eighties stigma through and
Speaker 2: I was like, I think I might die? Is this
Speaker 2: a death sentence? Am I going to live? So I
Speaker 2: think for a lot of that first day I was
Speaker 2: still in a lot of panic of I didn't know
Speaker 2: what was going to happen to.
Speaker 3: Me, and the irony really of your parents being at
Speaker 3: an eighties festival because they would have been very cognizant
Speaker 3: in the eighties of yascourge of AIDS and HIV at
Speaker 3: the time, and what were they doing? So they're still
Speaker 3: en route to you in they choose Life TA shirts.
Speaker 2: Yeah, bless their heart. So one of the leading HIV
Speaker 2: charities in the UK is called Terence Higgins Trust. My
Speaker 2: parents remember Terence Higgins from back in kind of the eighties,
Speaker 2: nineties and the noughties. And when they weren't on the
Speaker 2: phone to me, they were on the phone to them
Speaker 2: and they had called the support line to ask for
Speaker 2: help to be like, what do we do Our daughter
Speaker 2: has just been diagnosed, and they gave them powerful information
Speaker 2: of oh, this is what Ellie needs to know, but
Speaker 2: this is also what you need to say when you
Speaker 2: get there, because she's currently doing one thousand miles an hour.
Speaker 2: So don't turn up and list all of these fantastic
Speaker 2: things because she's not ready. What you need to be
Speaker 2: ready for is to like be her mum and dad
Speaker 2: and just support and get her through the next few days,
Speaker 2: and then you can give her all the information of
Speaker 2: what's going to happen next.
Speaker 3: In that period of time, Ellie, when you're waiting for
Speaker 3: your friend and you're waiting for your parents and your
Speaker 3: chicken little and your sky has fallen, well, you like,
Speaker 3: how did I get this?
Speaker 1: How did I get this?
Speaker 2: I think I carried that not just from that day,
Speaker 2: for like a good three years of not just how
Speaker 2: did I get it? But why me? Like why did
Speaker 2: this have to happen to me? I was in a relationship.
Speaker 2: I had always been very good at testing. This was
Speaker 2: not a test I did for symptoms. This is not
Speaker 2: something I thought I'd contracted. So I was like, why
Speaker 2: if I'm so safe at getting tested? Between partners, has
Speaker 2: this had to occur.
Speaker 1: And how did it occur?
Speaker 2: I don't fully know the ins and the out of
Speaker 2: what happened. In the UK, is a legal requirement when
Speaker 2: you're diagnosed that you do partner tracing, So any person
Speaker 2: six months prior to your last negative tests you contact,
Speaker 2: you can do it yourself where you can get it
Speaker 2: done anonymously and the clinic will do it for you.
Speaker 2: I from my knowledge, there is only one person that
Speaker 2: I know that I have had sexual contact with that
Speaker 2: has HIV, so I can make deductions from that of
Speaker 2: what I think occurred. Unfortunately, my yeah, my relationship broke
Speaker 2: down very quickly after being diagnosed, and therefore there's a
Speaker 2: lot of unanswered questions of how did it occur, how
Speaker 2: did this happen, and where did this kind of stem from.
Speaker 2: So I think that's also like something you carry because
Speaker 2: you always want to know the ifs, the wise, the wares,
Speaker 2: and it's something I've just had to learn to accept
Speaker 2: that I'm not going to get.
Speaker 1: That so you had to make how many fine calls?
Speaker 2: So for me, there was three people that I had
Speaker 2: contact with. One was basically currently my boyfriend, One was
Speaker 2: a boyfriend I had before I met him. And another
Speaker 2: one was someone that I had just had sex with
Speaker 2: at university. My boyfriend I told before I got into
Speaker 2: the clinics, when I sat on this church bench. I
Speaker 2: had told him. He knew about the whole positive and
Speaker 2: he was aware that this could happen. The boyfriend before that,
Speaker 2: I told personally and said, look, get yourself tested. The
Speaker 2: guy from university I did anonymously, So the clinic told
Speaker 2: him on my behalf, because at that time I thought
Speaker 2: if I told him, he would tell everyone at UNI,
Speaker 2: which is not what I wanted when I was about
Speaker 2: to go back to my final year.
Speaker 3: Right, So if they tell him anonymously, did I tell
Speaker 3: him who you are or just that's been in contact
Speaker 3: with someone?
Speaker 2: Just that he's been in contact.
Speaker 3: And the other guy that you told personally, how did
Speaker 3: he take that?
Speaker 2: Incredibly well because he'd already had Bear in mind, I've
Speaker 2: not been with this guy but almost like maybe like
Speaker 2: sixteen months. At this point, he'd already been tested and
Speaker 2: had had negative HIV results, and therefore the chances of
Speaker 2: us passing it back and forth or whatever were very slim.
Speaker 3: Right, and then the conversation with your current boyfriend.
Speaker 2: I think I was very emotionally charged, and I was
Speaker 2: of the opinion I was twenty one, and I thought,
Speaker 2: if it was me and just I have it. And
Speaker 2: I think statistically this is quite well known that it's
Speaker 2: quite hard for a woman to pass it to a man.
Speaker 2: So there was a chance that if I had had
Speaker 2: it for our whole relationship, I may not have passed
Speaker 2: it on to him. And I did say at the time,
Speaker 2: if it's just me, let's break up immediately. Never speak
Speaker 2: to me again. What's about to happen to me is
Speaker 2: going to be horrible, and I don't want you to
Speaker 2: witness this. He ended up also being positive, which then
Speaker 2: poses a question of where did it come from. I
Speaker 2: think the reaction to that from my side, I protected
Speaker 2: him lot. So if my parents ever asked does he
Speaker 2: have it? I was like, it's none of your business.
Speaker 2: Like our only concern as a family should be making
Speaker 2: me better, right, and that's what we focus on. So
Speaker 2: it doesn't matter whether he has it or not. It's
Speaker 2: not a conversation I need to have. He chose a
Speaker 2: different approach and decided to tell people that I had
Speaker 2: given him it, and I did it on purpose, and
Speaker 2: that was kind of a breakdown of our relationship, sure,
Speaker 2: because I was protecting him so much to try and
Speaker 2: soften the blow, and I didn't feel like it's being reciprocated.
Speaker 3: You were saying to your pearents that you were protecting
Speaker 3: the guy.
Speaker 1: Why were you doing that?
Speaker 2: Do you think? I? And it's hard to differential. So
Speaker 2: I'm twenty eight now and I was twenty one at
Speaker 2: the time. I thought he was my soulmate. Right. I
Speaker 2: was so bewilderingly in love with this man that like
Speaker 2: nothing else mattered. So from my perspective, all I wanted
Speaker 2: to do is make a place where if this was
Speaker 2: going to have longevity and continue, I did not want
Speaker 2: him to be in a position of coming to my
Speaker 2: family home and being made to feel like he had
Speaker 2: done something bad. Right, So my immediate reaction was I
Speaker 2: want to shield that because it doesn't matter who did
Speaker 2: what to who. We're in the situation we were in.
Speaker 2: And I think my parents probably sensed that that was
Speaker 2: the case. That I was trying to be very forward
Speaker 2: thinking and being a lot more like, I don't want
Speaker 2: emotional damage for anyone. Really, I want this to be
Speaker 2: like a smooth ride. I wants to be as painless
Speaker 2: as possible, and I just think maybe from his perspective,
Speaker 2: it wasn't seen that way.
Speaker 1: Do you think he knew about himself.
Speaker 2: I don't think he knew he had it. I think
Speaker 2: he may have had suspicions years prior to meeting me.
Speaker 2: So I think from the information that I've had, and
Speaker 2: you never know when you hear like gossip or hearsay,
Speaker 2: I think that perhaps he had an inclination, or he
Speaker 2: had been part of the trace, or something had occurred
Speaker 2: to make him think it could be the case. Had
Speaker 2: never got tested, had never thought this could happen to him,
Speaker 2: and when it all unfolded, I think for him it
Speaker 2: probably felt like everything was falling inwards because all the
Speaker 2: worries he's had before were coming true. And I imagine
Speaker 2: for him that was a lot like it was a
Speaker 2: huge emotional roller coaster. To realize that all the things
Speaker 2: you were saying weren't true are now happening. To then
Speaker 2: have affected someone else that you care about probably was
Speaker 2: quite hard.
Speaker 3: I don't understand. I imagine I'm like a lot of
Speaker 3: people in this regard. Yeah, so you've come back HIV positive.
Speaker 3: What is the link with HIV positive an aids.
Speaker 2: So they are two separate things. HIV itself is a virus,
Speaker 2: so that is the virus you get, So that is
Speaker 2: it basically affects your immune system and it will attack
Speaker 2: directly your immune system selves and replicate. It replicates to
Speaker 2: a point where your immune system will start to degrade
Speaker 2: because your immunitist was being taken over by HIV cells
Speaker 2: instead of replicating as immune system cells. So if you
Speaker 2: imagine that your immune system themselves are like a little
Speaker 2: factory and what they do every day is normally your
Speaker 2: immune system will then just pop out. Now immune system
Speaker 2: selves every day. HV is smart enough, it infects that
Speaker 2: cell and instead of reproducing immune systems, it reproduces HIV,
Speaker 2: which is what causes the virus to become very damaging
Speaker 2: in a person's body because your immune system will drop
Speaker 2: and the virus will increase. At the point that the
Speaker 2: virus gets to a certain level, you reach a point
Speaker 2: that you have no immune system to fight off any infection.
Speaker 2: So whether that's tonsilitis thrush or even like the sarcoma's
Speaker 2: we know from the eighties skin cancers, at that point
Speaker 2: it's what you call acquired immuno deficiency. So your immune
Speaker 2: system is now that compromised that you cannot fight off
Speaker 2: and that is when you develop what they call AIDS.
Speaker 3: But now there's medication that can prevent HIV becoming AIDS.
Speaker 2: Yeah, so, especially in the UK, and I think it's
Speaker 2: the same in Australia. Now there's not really any level
Speaker 2: of degradation to your immune system that you can't come
Speaker 2: back from. The medication is that powerful that even if so,
Speaker 2: a normal person like you will have about one thousand,
Speaker 2: six hundred per mili liter immune system cells. Someone living
Speaker 2: with HIV typically has between eight hundred to one thousand.
Speaker 2: It can go higher, but that's normally where you float
Speaker 2: if you get below two hundred. That's what the classes
Speaker 2: AIDS back in the eighties. Even if you get below
Speaker 2: two hundred, now you can come back up because the
Speaker 2: medication is so fantastic it can still cure it and
Speaker 2: get your immune system better. You could have long lasting
Speaker 2: issues if you've had if you've developed like a lung cancer,
Speaker 2: a skin cancer of course, is to have long lasting damage.
Speaker 2: But in most developed countries AIDS doesn't typically happen anymore.
Speaker 3: After this short break, we go back to the bench
Speaker 3: that alla set on after she was diagnosed and find
Speaker 3: out what happened next. We'll be right back. Let's go
Speaker 3: back to that moment. You didn't know any of this thing.
Speaker 3: You're waiting for your parents, the first moment that you
Speaker 3: saw your parents.
Speaker 1: Where were you and how is that moment?
Speaker 2: So I had still been sat on this bench by
Speaker 2: a canal. My best friend at this point had got
Speaker 2: to me, and I had cried probably for about three hours,
Speaker 2: to the point that every time I ran out of
Speaker 2: beer or cigarettes, I kept sending her back to the
Speaker 2: shop and I was like.
Speaker 1: Just keep me going.
Speaker 2: Yeah. When my mum and dad got there, I made
Speaker 2: a decision that I didn't want them to see me
Speaker 2: cry because I'd already had such kind of emotional conversations
Speaker 2: with them while they were driving that I was like,
Speaker 2: I don't want them to leave. So I lived in Birmingham,
Speaker 2: they live in Lincoln shel which about another three hour
Speaker 2: drive away, and I was like, they've got to go
Speaker 2: home tonight, and I don't want them to leave worried.
Speaker 2: So I was like, by the time they get here,
Speaker 2: I just I don't want to shed a tear. I
Speaker 2: just want to have a very adult conversation about what's happening.
Speaker 2: So I kind of met them as if we were
Speaker 2: just going for like a normal drink or dinner.
Speaker 3: How are they had they also made the same resolve
Speaker 3: or were they just picking up their cues from you?
Speaker 2: I think a lot of it was picking up cues
Speaker 2: for me. So immediately they took me to the pub,
Speaker 2: which I think a lot of people it sounds like
Speaker 2: they were trying to drown my stories. For us as
Speaker 2: a family, it's a very normal place for us to
Speaker 2: have gone anyway, like we would normally just go to
Speaker 2: the pub. We went and sat in a beer garden.
Speaker 2: They are anti smokers to the limit, so I apologize
Speaker 2: to be like, I'm sorry I today, I just I
Speaker 2: need to do this. We sat down and we were trying.
Speaker 2: I think we were all avoiding the topic, so we
Speaker 2: weren't talking about HIV at all, and my dad all
Speaker 2: of a sudden it's like laughing, like really really laughing
Speaker 2: to himself because I think every now and then I'm
Speaker 2: like just like wiping a little tier, and my Dad's like, oh, like,
Speaker 2: Elliott's really important if you'd stay positive. I was like,
Speaker 2: not really that far?
Speaker 1: Did he mean that he meant the joke.
Speaker 3: And then was that like an icebreaker or do you
Speaker 3: Then it opened the flatgates of your diagnosis and what
Speaker 3: it meant and what happens next?
Speaker 1: What does happen next?
Speaker 2: So for me, I got diagnosed in just like a
Speaker 2: normal sexual health clinic the next day, so we've got
Speaker 2: diagnosed on Monday. The next day they sent me to
Speaker 2: a HIV clinic. So I woke up at nine o'clock
Speaker 2: in the morning, went to this HIV clinic. And as
Speaker 2: I walked into this clinic, they told me that there
Speaker 2: was like formalities we needed to do and they're like,
Speaker 2: you need to do a prick test. So that's a
Speaker 2: test where you prick your finger. It goes on kind
Speaker 2: of like the COVID test where you know you used
Speaker 2: to like drip on it and within like ten minutes
Speaker 2: you'd have a result. There's a HIV test similar to that.
Speaker 2: So they told me I needed to do this test.
Speaker 2: And my head has gone if I need to do
Speaker 2: a test, I might not have.
Speaker 1: It right yes, And I was like.
Speaker 2: The only reason the test to me is because they're
Speaker 2: not sure which down. But I convinced myself that the
Speaker 2: reason they were asking these questions is because like they
Speaker 2: you know, they weren't sure either, and I was like,
Speaker 2: oh great, like this is an error. This is what
Speaker 2: I've been looking for for like the last twenty four hours. Fantastic. Obviously,
Speaker 2: as soon as I pricked my finger, They've gone are positive.
Speaker 2: And I was like, well, I just went let's do
Speaker 2: it again?
Speaker 1: What did they say?
Speaker 2: I was so defiant. I was like, let's just do
Speaker 2: it again, like I'm sure it's an.
Speaker 1: Error, right. Did they do it again?
Speaker 2: And then we did it about yeah three times?
Speaker 1: Oh really yeah?
Speaker 2: And then on the third time the nurse apologized. It
Speaker 2: was like I'm really sorry. We can't. She was like
Speaker 2: I can't let this keep going on, like we're going
Speaker 2: to have to at one point accept it. And then
Speaker 2: from that point on, they took blood from my arm,
Speaker 2: spoke to me about the medication I could take, and
Speaker 2: again I think I then got over excited because they
Speaker 2: were like, what I'd call it is like a magic pill,
Speaker 2: and they were like, there says tablet you can take
Speaker 2: that will suppress the virus. It means you can't pass
Speaker 2: it on. And I was like, give me it a
Speaker 2: media na, like now I want it now.
Speaker 1: Yeah, and there a ten dose.
Speaker 2: Yeah. They were like, we can't give you it now
Speaker 2: because you have to go through like genetic screening. We
Speaker 2: need to test of your hb's resistance to anything, et cetera,
Speaker 2: et cetera. And I was so defiant. I was like no.
Speaker 2: I was like, I can't go two weeks waiting for
Speaker 2: a doctor to look at results to have this pill,
Speaker 2: like I need it. So I left on the Tuesday
Speaker 2: without tablets and I was distraught. So the hospital is
Speaker 2: about three miles from my house and I walked there
Speaker 2: every day and back on the phone to my dad
Speaker 2: crying being like I don't know why they're doing this
Speaker 2: to me, Like I just want the tablet, and they
Speaker 2: took pity on me. So by the Wednesday, I got
Speaker 2: a call and they were like, if you want to
Speaker 2: come in now, we're going to give you some meds.
Speaker 2: And I was like, oh, Tony Grail Wow.
Speaker 1: And in the meantime, are you because you did have
Speaker 1: any symptoms at all?
Speaker 2: Yeah, and you were in the.
Speaker 1: Rudest of good health.
Speaker 3: Were you doing this mental inventory of yourself all the time,
Speaker 3: like is this seat?
Speaker 2: Is that?
Speaker 1: Have I got a cough? Have I?
Speaker 3: Were you very internal at that point in your own body.
Speaker 2: Yeah, and no, I think that in hindsight, I didn't
Speaker 2: have symptoms at the time. In hindsight, now I know
Speaker 2: HIV well enough. I did present with symptoms that I
Speaker 2: just wasn't aware of. So I had I'm six foot
Speaker 2: tall and I had dropped to about fifty kilos in weight, which.
Speaker 1: Is oh stick thin, right, Yes.
Speaker 2: And I just kind of boiled it down to I
Speaker 2: was working at a fashion company, I was drinking a lot,
Speaker 2: I was skipping dinner, and I was like, look, that's
Speaker 2: just what it was. And obviously, in hindsight it is
Speaker 2: one of the symptoms of HIV is wasting and I
Speaker 2: have really wasted away. And so my CD four, which
Speaker 2: is your immune system at the time when I got tested,
Speaker 2: was about eighty So I was below the threshold of
Speaker 2: what they were in the eighties classes aids right, And
Speaker 2: I was probably weeks off being deathly sick. And I
Speaker 2: had no idea.
Speaker 3: And when you say you had no ideas, so your
Speaker 3: life was you were living your life normally because you
Speaker 3: said the time of your life and going out and
Speaker 3: having this great job and big circle of friends, I was.
Speaker 2: I think it was just like I was blindsided, Like
Speaker 2: I also never thought and I think a lot of
Speaker 2: women think this. I didn't think it could ever happen
Speaker 2: to me, Like I didn't know that HIV affected straight
Speaker 2: people because I was so incorrectly of the assumption that
Speaker 2: was like a gay disease that I had never even
Speaker 2: put any of it together.
Speaker 3: But so at this point, so they've started giving you
Speaker 3: the meds. Yeah, and what does that mean? How often
Speaker 3: are you taking them?
Speaker 1: Is it daily? Is it once?
Speaker 3: What happens? What's your regimen with it?
Speaker 2: When I first got diagnosed, the tablets that gave me
Speaker 2: immediately was two pills once a day. I then after
Speaker 2: two weeks when I spoke to a doctor, swapped to
Speaker 2: one pill once a day. I've recently swapped back to
Speaker 2: two pills once a day. But other than that, that's
Speaker 2: it in terms of treatment regime, Like that's all you do.
Speaker 2: It's just two pills a day.
Speaker 1: So you going magic pill is kind of right? Yeah?
Speaker 3: And then how long before you started to feel more
Speaker 3: like yourself?
Speaker 2: The big target for people living with HIV is something
Speaker 2: that we call undetectable. So undetectable is when so your
Speaker 2: viral loads, So you get two tests when you get
Speaker 2: diners HV your CD four, which is your immune system
Speaker 2: that we've talked about, and your viral load. Your CD
Speaker 2: four often will drop low when you have HIV, and
Speaker 2: then you can build that back up. Your viral load
Speaker 2: is the level of potency of the virus in your blood.
Speaker 2: What you want to do is drop that viral load
Speaker 2: below fifty counts per million. Once you drop below fifty,
Speaker 2: you are classed as undetectable. What that means is, in
Speaker 2: normal blood tests, you cannot detect the HIV virus in
Speaker 2: your blood anymore. It also means you are unable to
Speaker 2: pass the virus on through sexual contact, through breastfeeding, through
Speaker 2: having children, and that's the target you weigh for when
Speaker 2: you're first diagnosed. So I was diagnosed on the twentieth
Speaker 2: of August. I first got told I was undetectable mid September.
Speaker 1: Oh so that quickly, yeah? And is that a usual
Speaker 1: progression or was that particularly good?
Speaker 2: It's pretty common. What they normally say is before you
Speaker 2: ever have any encounter of unprotected sex, you should wait
Speaker 2: six months from being told you're undetectable, just to make
Speaker 2: sure that level holds where it needs to be. And
Speaker 2: then you're one hundred percent safe. But typically these tablets
Speaker 2: are impressive, like they are as magic as we talk about,
Speaker 2: and they can just car crash you to the floor.
Speaker 3: Okay, So at this point, so mid siptimber, where are
Speaker 3: you in your life? Was he still your boyfriend then?
Speaker 3: Or was your breakup pretty immediate?
Speaker 2: We just broken up, so I think it was about
Speaker 2: a week before that we fully cut ties, no contact
Speaker 2: at all, and I had just moved back into university
Speaker 2: halls ready to start my final year.
Speaker 1: Wow, how was that?
Speaker 2: I didn't want anyone to know, so I wanted it
Speaker 2: to be a secret. So other than my best friend
Speaker 2: didn't go to university. I met her because we worked
Speaker 2: for the same bar and my mum and dad. No
Speaker 2: one else knew, and I'd kept it a secret during
Speaker 2: fresh As Week. So although fresher week I was supposed
Speaker 2: to be for first years, obviously, every year goes out
Speaker 2: with parties. I'd gone to a party in fresh As
Speaker 2: Week and a boy had tried to kiss me and
Speaker 2: take me to his room, and I had panicked because
Speaker 2: it was like my first male contacts and at that
Speaker 2: point I felt so dirty and so like shameful that
Speaker 2: I I freaked out and I told him I had HIV.
Speaker 2: It's like he'd walked me up to his room, and
Speaker 2: I kind of thought it was just like a let's
Speaker 2: have a private chat. Obviously we've known each other for
Speaker 2: like three years, and I thought it was just like
Speaker 2: catching up. And as soon as it got to a
Speaker 2: stage of being like anything sexual, I freaked and I
Speaker 2: was like, I'm really sorry. I've just been told I'm
Speaker 2: HIV positive. I've then gone into full panic and have
Speaker 2: ran immediately home to find one of my friends that
Speaker 2: you need to be like, I'm really sorry, but I'm
Speaker 2: also HIV positive, Thank the Lord. Her dad basically works
Speaker 2: in pharmacy, so she knew all about HIV meds and
Speaker 2: she was like, you're gonna be fine, And I was like,
Speaker 2: this is really refreshing.
Speaker 1: Wow. Yeah, that is a blassing, isn't it.
Speaker 2: Yeah, because she took it so well, I think over
Speaker 2: the next eight months, I told maybe ten people and
Speaker 2: I'd had this conversation. I was like, just please don't
Speaker 2: tell anyone, like, let's just keep it with us, like
Speaker 2: I'm all right. Like a lot of them had cried
Speaker 2: when I told them. It was quite like traumatic. We
Speaker 2: then end up in a pub one Sunday as you
Speaker 2: was like Uni students, everyone's just like random me in
Speaker 2: a pub on a Sunday and one of his friends
Speaker 2: came over to me and was like, are you okay?
Speaker 2: And I was like, yeah, I'm fine, and he was like, oh,
Speaker 2: we know you're going through a lot, Like are you
Speaker 2: sure you're all right? And it was like a light
Speaker 2: bulb moment or I'm like you all know?
Speaker 1: Oh, everybody?
Speaker 2: And it turns out that he had told everyone and
Speaker 2: everyone at university. What it felt like to me is
Speaker 2: like everyone in the city of Birmingham knew I had
Speaker 2: HIV at that point because I felt like I couldn't
Speaker 2: walk anywhere that people staring at me, and they weren't
Speaker 2: saying that like Ellie can't pass it on this, that
Speaker 2: and the other. She's doing so well. It's been like
Speaker 2: eight months. They were saying, like, Ellie's got an sci
Speaker 2: Ellie's got aids.
Speaker 3: Be careful in the retrospect of knowing that they'd all known,
Speaker 3: had they treated you differently than they had previously.
Speaker 2: I think people had actively avoided me. You're right, chose
Speaker 2: to not to share drinks or sit next to me,
Speaker 2: or kept me at a distance. Some people had obviously
Speaker 2: tooken pity and gone like the opposite way and have
Speaker 2: been tried to be like overly caring. But from that
Speaker 2: point I basically made the decision. I was sat there
Speaker 2: one day and I was like, I feel like HIV
Speaker 2: is tattooed on my forehead, Like I cannot walk around
Speaker 2: campus without feeling anyone is talking about it. So I
Speaker 2: got a positive symbol tattooed on my middle finger.
Speaker 1: Ah.
Speaker 2: Yeah, because I was just a union I was like,
Speaker 2: can you'll just leave me alone?
Speaker 3: Ye're right, your dad would like the positive the positive symbol.
Speaker 3: There's still so much more to Ellie's story. In just
Speaker 3: a minute, we'll talk about her decision to reveal her
Speaker 3: diagnosis on live TV. Where you are now, I find
Speaker 3: so remarkable, thank you, because this is a thing about secrecy,
Speaker 3: and as you alluded to before earlier, this you feel dirty,
Speaker 3: you feel ashamed, and our tendencies to keep that to ourselves.
Speaker 3: But at some point, and maybe it was the point
Speaker 3: of the tattoo and what that represented, you decided that
Speaker 3: you were going to step into the truth of your situation.
Speaker 2: Yeah. I got diagnosed in twenty eighteen. I got this
Speaker 2: tattoo in twenty nineteen. I did not publicly speak about
Speaker 2: HIV in two until twenty twenty one. I'd graduated UNI,
Speaker 2: I'd gone into work, and it felt like this big
Speaker 2: secret came back. So although having my like HIV diagnosis
Speaker 2: and exposed at university was awful, well, it actually was
Speaker 2: quite freeing because I could talk about it because I
Speaker 2: evere already knew, so like I didn't have to keep
Speaker 2: it a secret anymore. When I went into work. It
Speaker 2: became this thing of I was constantly keeping up with
Speaker 2: a lie of like what excuse have I made for this?
Speaker 2: What have I lied about this tablet being so I
Speaker 2: take my tablet at lunch time and people would always
Speaker 2: be like, oh, what's that alarm for? And I'm like,
Speaker 2: oh god, I've got this like immune thing. And it
Speaker 2: became such a hard task to maintain the secret that
Speaker 2: it felt so heavy and so like weighty. And I'd
Speaker 2: always admired people that spoke about HREV. I was always like,
Speaker 2: oh my god, I would when I'm strong enough. And
Speaker 2: the first day got diagnosed, my dad said he was like,
Speaker 2: one day she will scream this from the rooftops. He
Speaker 2: was like, she will do it well, just let her
Speaker 2: really let her get there. So for World Age's Day
Speaker 2: in twenty twenty one, I made the decision to put
Speaker 2: a video on YouTube. Originally it was just I went
Speaker 2: on my personal Facebook and it was just it's a
Speaker 2: very It doesn't talk about where I got it from
Speaker 2: or anything like that. It just talks about me living
Speaker 2: with HIV, what HIV is. And the response was so
Speaker 2: overwhelming I moved it to YouTube, which now has like
Speaker 2: two hundred thousand views or something crazy. From that, I
Speaker 2: then found HIV charities or they found me, and I
Speaker 2: started getting into activism and it's now become such like
Speaker 2: a force of life, Like it's like my pub I
Speaker 2: think it's like my purpose in life now that like
Speaker 2: I just it put such a fire in my belly.
Speaker 3: Had you tipped off anyone at work? So you you're
Speaker 3: at that point kind of keeping this secret and then you.
Speaker 1: Do you do the vlog?
Speaker 2: Yeah?
Speaker 3: About had were people at work prepared for that?
Speaker 1: Did you think that would say it?
Speaker 2: Yes? And no? So like my friends at work knew.
Speaker 2: So I think that was two girls at the time
Speaker 2: that I worked with that knew. The bigger thing is,
Speaker 2: so I did the video in twenty twenty one. That
Speaker 2: was then kind of like what I call silent activism.
Speaker 2: It was just like me doing my thing. A year later,
Speaker 2: in twenty twenty two, the first time I publicly spoke
Speaker 2: about having HIV I went on live National TV in
Speaker 2: the UK and people always like, that's insane. The first
Speaker 2: time you did, like a good talk on live TV. Yeah,
Speaker 2: but I got invited for World Day's Day to go
Speaker 2: on a Channel four program and I was like, look,
Speaker 2: I'll do it. At that point, I just changed jobs,
Speaker 2: so I'd moved to Manchester. I didn't no one at
Speaker 2: work no I had HIV and I had to book
Speaker 2: the day off because I work in operations. The biggest
Speaker 2: day of the year is Black Friday, Well Day's Day
Speaker 2: and Black Friday next to each other, right, So I'd
Speaker 2: like beg and plead to be like please can I
Speaker 2: have this day off? And people like why and I'm like,
Speaker 2: I've been a bte to go on TV like it's
Speaker 2: a big deal. And they were all like, oh, we'll
Speaker 2: put it on in the office and I was like.
Speaker 3: Oh, oh, so people had you had seen at.
Speaker 1: People I've got to go on TV?
Speaker 2: Yeah? Did they not go what for yeah, but I
Speaker 2: kept being like, oh, it's charity work. It's just a
Speaker 2: charity work.
Speaker 1: Okay, okay, wow. And did they put it on in
Speaker 1: the office.
Speaker 2: No, thank god, but they all watched it and then
Speaker 2: the next day, so I felt so awkward. I've then,
Speaker 2: I think it was on a Thursday, and we're all
Speaker 2: in the office on the Friday. I've gone in on
Speaker 2: the Friday and everyone's like, you're insane and I'm like,
Speaker 2: oh no, like it's find and like no, we love
Speaker 2: what you do, and I'm like, can we just in
Speaker 2: the office.
Speaker 3: Maybe, Yeah, concentrate on work, have something to do.
Speaker 1: The start of the truth and telling the truth.
Speaker 3: Yeah, and no longer hiding had a kind of snowball.
Speaker 1: Effect for you.
Speaker 2: In twenty twenty two when I went on TV, I
Speaker 2: don't think i'd fully dealt with the demons I had
Speaker 2: and kind of the issues that I mentally was coping
Speaker 2: with living with HIV. After that, it thrust me into
Speaker 2: this world where I was having the conversation almost daily,
Speaker 2: and having that conversation was almost like cathartic because I
Speaker 2: was able to say things I've never said before or
Speaker 2: discuss aspects of HIV that I hadn't had the opportunity
Speaker 2: to speak about what.
Speaker 1: Were those things? Can you remember any of them?
Speaker 2: I think a lot of it was so if I
Speaker 2: got diynos at twenty one, I'm twenty eight now and
Speaker 2: I'm still single, and I say to people, like dating
Speaker 2: with HIV was something I used to struggle to talk
Speaker 2: about because dating in your twenties, and we all know
Speaker 2: this with like hinge, Tinder, etcetera, is horrific. It's awful, regardless,
Speaker 2: to put this on top of it was like awful.
Speaker 2: And the way that men have treated me and the
Speaker 2: responses that I've had, I used to be embarrassed talking
Speaker 2: about the way people would treat me because I think
Speaker 2: I've felt at that point sometimes like I deserved it
Speaker 2: and like what they were saying might be true. And
Speaker 2: I think being given a platform to speak gave me
Speaker 2: the realization of this isn't okay, and I'm strong enough
Speaker 2: to talk and I want to be a voice to
Speaker 2: people to go if you were ever treated like that,
Speaker 2: that is not acceptable and we do not stand for
Speaker 2: that as a community. And if someone does that, run immediately,
Speaker 2: use it as a litmus test and run.
Speaker 3: But at what point would you disclose to a potential date.
Speaker 2: In the early years, I used to wait like until
Speaker 2: like the second or third date, and then I'd say something.
Speaker 2: Now and it's just the world we live in now,
Speaker 2: like modern technology where you're on hinge and immediately someone's like,
Speaker 2: can I have your Instagram?
Speaker 1: And I'm like, yeah, so I can say everything star.
Speaker 2: I was like give and I was like why, and
Speaker 2: I'm like, oh, I do this all charity work. It's
Speaker 2: like all if my Instagram's a bit controversial, were like,
Speaker 2: what is it? And I'm like, oh, go into it.
Speaker 3: That only makes them, by the way, more intrigued and
Speaker 3: more likely to suit you.
Speaker 2: Well, why can't I have it? And I'm like, oh,
Speaker 2: but the worst thing I realized recently is like you
Speaker 2: can google my name and find it. So I was like,
Speaker 2: if you know my full name, you can also find it.
Speaker 2: So I have to be like, it's not delicate. I
Speaker 2: think the education for HV is awful, especially like the
Speaker 2: straight community, for like heterosexual men and women, the education
Speaker 2: is so poor and across the group it's so poor.
Speaker 2: And because of that, if you find out that I
Speaker 2: have hov too early on to knowing me, you don't
Speaker 2: have the grace of knowing Ellie, like, you've not seen
Speaker 2: my personality and seen why I'm as a person, and
Speaker 2: you go straight off that judgment of well, I don't
Speaker 2: want to date someone with HIV. I lose the opportunity
Speaker 2: to get on my soapbox and be like, this is
Speaker 2: what HIV is like, this is great. But also they
Speaker 2: lose the education, which I feel a bit like downtrodden by.
Speaker 2: So I try and hold it back now to a
Speaker 2: point where someone has kind of had a good conversation
Speaker 2: with me, knows me very well, knows my rapport and
Speaker 2: how I work, and then I'll say, look, let's have
Speaker 2: a conversation. How do you feel about this.
Speaker 3: And what sort of responses have you had You said
Speaker 3: that they'd been you know, you'd had terrible things said
Speaker 3: to you.
Speaker 1: Yeah.
Speaker 2: The thing I find difficult now is you have the
Speaker 2: immediate reaction to finding out someone has HIV, and those
Speaker 2: responses I've had from people are there's incorrect assumptions that
Speaker 2: in order for me to have got HIV at twenty one,
Speaker 2: I have had sex with every man on the planet, right,
Speaker 2: And that's the immediate assumption that most people make isn't true.
Speaker 2: I would love it to be true. Not true, but
Speaker 2: that's the immediate response is like she has done something
Speaker 2: to deserve this or whatever. I then now also get
Speaker 2: a different side of things where I speak about HIV
Speaker 2: very publicly, and I speak about the damage that HIV
Speaker 2: has done to my mental health. Physically, HREV has never
Speaker 2: touched me as a person right, Physically, it has no
Speaker 2: effect on my health. I can't pass it on. It's
Speaker 2: never made me unhealthy. I'm completely fine and well mentally.
Speaker 2: The toll that has taken on me over these years
Speaker 2: isn't pleasant, and I've now had people that find that
Speaker 2: mental issue a lot more dangerous because people are like, oh, well,
Speaker 2: I'm worried about how you cope with this, And I'm like,
Speaker 2: I don't see where that comes from, because I've coped
Speaker 2: with so much and I've come so far from it
Speaker 2: that it almost feels insulting that you think that I
Speaker 2: am weak because I have this?
Speaker 3: Do you think that sometimes people say that as a excuse, yeah,
Speaker 3: for not wanting to pursue things further.
Speaker 2: Yeah, I think there's so much fear, and it's so understandable, right.
Speaker 2: The fear is that, like people don't want to get
Speaker 2: it and I say to everyone else, I would never
Speaker 2: in my life ever want to pass this on to
Speaker 2: someone This was a very horrific, traumatic thing that happened
Speaker 2: to me. Yes, I've taken it in my stride and
Speaker 2: I've become so powerful from it. I would never want
Speaker 2: to pass it on to someone else. I would never
Speaker 2: want someone else to endure the things that I've had
Speaker 2: to endure. What people don't realize is having sex with
Speaker 2: someone that is HATREV positive or medication is one of
Speaker 2: the safest people to have sex with because you know
Speaker 2: you have HREV and therefore you're on leads and you
Speaker 2: can't pass it on. There's so many people in the
Speaker 2: community that don't know when the last test was, may
Speaker 2: have never been tested with phrov let alone any other SI.
Speaker 2: But you would happily have sex with them on a
Speaker 2: night out as a one night stands, but you would
Speaker 2: not end the relationship. Yeah.
Speaker 3: It's so interesting, particularly among a lot of straight people,
Speaker 3: because I think, and maybe that is a hangover from
Speaker 3: the eighties that they think that the community's kind of
Speaker 3: protected from it. Yeah, but that's no longer the case.
Speaker 3: In fact, it's the opposite now.
Speaker 2: Yeah, So I think for the first time ever, in
Speaker 2: twenty twenty three, heterosexual transmissions of HIV overtook homosexual transmissions.
Speaker 2: So typically it's also known with a gay disease. It's
Speaker 2: because the transmission of HIV, depending on the type of
Speaker 2: sex you have, is more prevalent. So like anal sex,
Speaker 2: HATREV is a blood borne virus, So anal sex there
Speaker 2: is naturally more blood, microtares, etc. And therefore the transmission
Speaker 2: is higher, which is why it's more prevalent in gay men.
Speaker 2: If heterosexuals are having anal and vaginal sex, the risk
Speaker 2: is the same. And I think that's where it's been
Speaker 2: incorrectly skewed, is it's just become this stigma of it
Speaker 2: happens to gay people and you don't take the science off. No,
Speaker 2: this is actually where it forms from, and this is
Speaker 2: why that's a bigger risk.
Speaker 3: Okay, So what bloke has allowed himself to mate? Ili
Speaker 3: be struck by the beauty of Illy and gone out
Speaker 3: with Illy.
Speaker 2: I've been single pretty much since the day I was diagnosed.
Speaker 2: I've dated, so I very recently had what I thought
Speaker 2: was the love of my life. Right, So I was
Speaker 2: in like a three month relationship. I was spun away
Speaker 2: by the magic of love and fantasticness. And I think
Speaker 2: it's I can be emotionally weak because I've come from
Speaker 2: a place of being ghosted and ignored that that level
Speaker 2: of intense kind of affection is empowering to me. And
Speaker 2: I'm like, oh my god, this is it, like this
Speaker 2: is my prince Ahmi.
Speaker 1: It's nourishing, it's like water to apart song.
Speaker 2: Of course, so my last relationship, ironically, he dumped me
Speaker 2: on World AG's Day this year. Not very nice?
Speaker 1: Oh did he not?
Speaker 2: I was about to talk in front of three hundred
Speaker 2: people and he rang me to dump me, so I
Speaker 2: had to cancel.
Speaker 1: What did he say?
Speaker 2: He basically said, it's not you, it's me. And I
Speaker 2: was like, I feel like there's a lot more to
Speaker 2: im back in and you're not willing to talk. And
Speaker 2: then I asked for a conversation. He was like, oh,
Speaker 2: I'm just going to go for a run with my friend.
Speaker 2: So by I hope you have a nice life. And
Speaker 2: that was the yeah.
Speaker 3: And so, of course, because you live in this in
Speaker 3: this world now, the territory where you don't know. I mean,
Speaker 3: as you said, dating is complicated enough anyway, but you
Speaker 3: don't know really how much of a role your HIV
Speaker 3: positive status plays in the decisions and the reactions that
Speaker 3: you get from men that you're dating.
Speaker 2: I also think it, and I think anyone that's had
Speaker 2: like a big life changing event happened to them, the
Speaker 2: person you are after that is different, right, And I
Speaker 2: would say HREV is like this huge pivotal moment of
Speaker 2: my life where everything shifted. I became more present, more confident,
Speaker 2: and then when I became an activist, that became like
Speaker 2: this purpose I have in life. Men don't always like
Speaker 2: really strong women. Yes, And I think because I am
Speaker 2: career wise, I'm very successful. So like if you take
Speaker 2: HREV entire out of the picture, I've done wonders for
Speaker 2: myself my career, and I continue to achieve and achieve
Speaker 2: outside of that. I basically run like this mini own
Speaker 2: business of activism where I speak and I talk and
Speaker 2: I go everywhere I can to do what I need
Speaker 2: to do to get this voice out there that I
Speaker 2: think it is daunting for someone to look at that
Speaker 2: and go, well, how do you do all this? And
Speaker 2: I'm like, it's just me. That's just who I am,
Speaker 2: Like that's what I want to do with my life.
Speaker 2: That I also have expectations of maybe what I want
Speaker 2: that I find.
Speaker 1: Hard to find, and what do you want?
Speaker 2: HIV gave me presents that I never knew existed. I
Speaker 2: do not remember before having HIV, remembering like a conversation
Speaker 2: or a moment, and I make such a point now
Speaker 2: to live today, like if I'm going out for a
Speaker 2: drink with you or going out for dinner, I want
Speaker 2: it to be the best inn we've ever had in
Speaker 2: our lives, because tomorrow wasn't promised, and I think I
Speaker 2: want someone that can get in that moment with me,
Speaker 2: and not someone that turns up and goes, oh, I've
Speaker 2: had a horrible do at work this yeah, the early yard,
Speaker 2: I fell awful. I want someone to go, let's just
Speaker 2: put it down and have fun and embrace today because
Speaker 2: tomorrow is not doing. I mean, tomorrow is a gift,
Speaker 2: not a promise, and I want someone that can be
Speaker 2: in that presence with me.
Speaker 3: Your optimism and your exuberance.
Speaker 1: Must make you attractive to me. I'd hope so, yes,
Speaker 1: but you don't. You don't have the evidence that that's
Speaker 1: the case.
Speaker 2: I don't think I've found someone yet that is on
Speaker 2: the energy that I am looking for. So I don't
Speaker 2: want to sit here and say like, yes I have
Speaker 2: male suitors. I have people that i've I mean, if
Speaker 2: I wanted to go on a debt, I could go
Speaker 2: on a date. And I think what I've decided for
Speaker 2: twenty twenty five. I want to live like my Carrie
Speaker 2: Bradshaw life, like this is my Sex and the City.
Speaker 2: I'm twenty eight.
Speaker 3: Which series sweeted series because You've got to be very careful.
Speaker 1: I've got to be very careful.
Speaker 3: I don't want you to move moving to Paris with
Speaker 3: a ballet dancer who's monumentally wrong, or hooking up with
Speaker 3: big who's a rotter.
Speaker 2: No, I think I'm like the start of season five exclusively,
Speaker 2: well you know when she starts, she's just like a
Speaker 2: man hater and she's a bit like ready to love.
Speaker 2: I think I've started twenty to five like that, Like
Speaker 2: I've come out of a breakup and I'm like hate men, right,
Speaker 2: and I think it's about to turn. I'm about to
Speaker 2: be like, let's.
Speaker 3: You know what, if there's one thing I know about men,
Speaker 3: they're very attractive to women that hate that. That's really that's.
Speaker 1: Going to be your primo, your primo entree to their world.
Speaker 2: Yeah, well maybe we have a Samantha. Yeah, do you
Speaker 2: know what I mean?
Speaker 3: Like, yeah, right, yeah, Samantha, Samantha. And in many ways,
Speaker 3: you know, it's like spring arrived. Yeah, like with the
Speaker 3: awkward blooming. Yeah, you're so lovely, thank you.
Speaker 1: No, You're just so lovely.
Speaker 3: And I mean that in the sense of when I
Speaker 3: was saying earlier, you know, men must be attracted to
Speaker 3: your your beauty and your the essence of you, but
Speaker 3: women also must be in the course of your life.
Speaker 3: In the last eight years, have people dropped off as friends?
Speaker 2: Yeah? So, and it's really sad. So Like I think
Speaker 2: I spoke about this earlier. My best friend who came
Speaker 2: to sit with me when I was first diagnosed. We've
Speaker 2: got two matching tattoos together. She was Australia and we
Speaker 2: were like sisters. We are no longer friends, which is
Speaker 2: painful to me because I loved her so much. I
Speaker 2: think it was a natural progression of when we were
Speaker 2: really good friends. I wasn't okay, and I think that
Speaker 2: maybe took toll on friendship. But also she was ready
Speaker 2: to go and live a life that I wasn't ready for.
Speaker 2: She wanted to have a boyfriend and have like this
Speaker 2: fantastic life, and I was still in a place of
Speaker 2: like I need to be a bit reckless, and I
Speaker 2: think it deteriorated the friendship to the point that we
Speaker 2: don't talk anyone, which is so sad because I still
Speaker 2: have no bad word to say about I love her
Speaker 2: to pieces, but it just couldn't weather the storm.
Speaker 3: And sometimes I think some friendships can't be the brunt
Speaker 3: of that searing intimacya You know, it's like if you've
Speaker 3: had a friend who's broken up with her boyfriend and
Speaker 3: then she gets back together with him, and in that
Speaker 3: you just can't kind of get back on track. But
Speaker 3: the loss of a friend is painful.
Speaker 2: Oh, it's a worthbreak I've ever been through in my life.
Speaker 3: You've had periods of such growth, Yeah, painful growth a
Speaker 3: lot of us. Yeah, And not everyone in your situation
Speaker 3: would have been capable of that growth or wanted that growth.
Speaker 3: Do you find sometimes that the rest of the world
Speaker 3: has not reason to make you?
Speaker 2: Yeah, I say this to my dad all the time.
Speaker 2: I never understood the word wisdom until about the last
Speaker 2: two years of my life, and I was like, I
Speaker 2: don't know, I not wise meant. But like I look
Speaker 2: back at the versions of Elli, and I go, God,
Speaker 2: I'm so much wiser, Like I have so much more
Speaker 2: growth and experience and wisdom than what I had before.
Speaker 2: And unfortunately that wisdom comes from pain, and it comes
Speaker 2: from a place where I was treated poorly or I
Speaker 2: got diagnosed with HIV and I had to kind of
Speaker 2: grow and evolve and change and that's where I developed
Speaker 2: my wisdom. And there's a lot of people in life
Speaker 2: that I think, and God bless them, are so fortunate
Speaker 2: that they've never had an encounter of that scale and
Speaker 2: the worst thing that ever happens to them is like
Speaker 2: what they burned their chicken nuggets for dinner, and like,
Speaker 2: God bless them, Like I'm glad that that is your
Speaker 2: that's your epitome of the worst thing's ever happened to you.
Speaker 2: But I don't think you can ever resonate with someone
Speaker 2: that doesn't have the comparison that you have, because they
Speaker 2: see you grow and they're like why, and you're like, well.
Speaker 1: I have to, yes.
Speaker 3: But even some people, many people who are exposed to
Speaker 3: like you, know, as my mum always says, if you.
Speaker 1: Live long enough, terrible things are going to happen.
Speaker 3: Right, It's really she says it in a very kind
Speaker 3: of optimistic way, the most pessimistic.
Speaker 1: Thing you've ever said. But it's true.
Speaker 3: Even when some people are exposed to the most brutal
Speaker 3: of pains, it doesn't seem to unlocking them.
Speaker 1: As you refer to it, the wisdom.
Speaker 3: Yeah, some people like retreat into themselves or or the
Speaker 3: sky's falling head down, hiding from the truth of themselves
Speaker 3: or the situation or whatever.
Speaker 1: You're very unique in the way that you have.
Speaker 3: Stepped into it and you've looked outwards and you've opened
Speaker 3: your arms to the world.
Speaker 2: Yeah, I think. And it's weird because I say so
Speaker 2: everyone like my The only way I saw a way
Speaker 2: forward was thrusting my life open. And the only way
Speaker 2: I could see personal growth and getting through this was
Speaker 2: to stop lying, stop keeping a secret, and just going
Speaker 2: this is me, this is it. I'm an open book.
Speaker 2: Let's go like, whatever you want to know, I'll tell you.
Speaker 2: And it was the most freeing and cathartic thing I did.
Speaker 2: Because the more I do it, the more I'm like,
Speaker 2: oh God, I love this, Like I want to speak more,
Speaker 2: get me on a stage, like I will do it
Speaker 2: and it's not for everyone, but for me. The response
Speaker 2: I also get, especially from like other young women that
Speaker 2: like message me or contact me on Instagram, it like
Speaker 2: it's so nice that they're like, I could never do that,
Speaker 2: but seeing you do it makes me feel better.
Speaker 3: M because nothing is more isolating then feeling that you
Speaker 3: have to keep something about yourself a sacred Yeah.
Speaker 2: And I think the biggest thing I said to everyone.
Speaker 2: There are countless times in my life, even recently, where
Speaker 2: like I experienced loneliness awfully and I feel so alone.
Speaker 2: And I was like, the one thing that stops you
Speaker 2: feeling alone is being given the opportunity to speak. I
Speaker 2: was like, because when I can go on my Instagram
Speaker 2: story or post a YouTube video or do like an
Speaker 2: interview and talk, I don't feel alone anymore because all
Speaker 2: the things that I would have drunkenly said to my
Speaker 2: friend over a pint, I've been able to say and
Speaker 2: get off of my chest. So at least if it's
Speaker 2: not helped anyone, like it's helped me feel better.
Speaker 3: When you think of your future past your carry season
Speaker 3: or your cementth season, whatever, twenty twenty five holes, do
Speaker 3: you have like a mental vision board that has a
Speaker 3: boyfriend on a family marriage, like, how do you see
Speaker 3: your future?
Speaker 2: Yeah, it's weird. I think my understanding of HIV when
Speaker 2: I was first diagnosed was that I couldn't have children,
Speaker 2: And although that I was always told that is not
Speaker 2: true and you can have children without passing it on.
Speaker 2: My kind of issues with having children is, although you'll
Speaker 2: tell me there's a zero point zero one percent chance
Speaker 2: of this happening, my risk of contracting HIV at twenty
Speaker 2: one was a similar risk right as a one in
Speaker 2: a million, Like how did this happen? And I always
Speaker 2: have this thought on the back of my head that's
Speaker 2: like I could do it again. So it's not that
Speaker 2: I don't want kids, it's that I would love to
Speaker 2: adopt one hundred percent would love to adopt. To adopt
Speaker 2: a child with HIV to me feels like insect, like
Speaker 2: I would love to offer a life to someone. To
Speaker 2: be like, this is insanity. So I think there's the
Speaker 2: little girl in Ellie who says, of course, I would
Speaker 2: love to skip off in the sunset with a man,
Speaker 2: like I would love my Prince Charming, I'd love my
Speaker 2: Cinderella story. There is the defiant Ellie who has grown
Speaker 2: over the last six years gone. I don't not that
Speaker 2: I don't need a man, but like I want one,
Speaker 2: but I don't need it. And I could do anything.
Speaker 2: I could conquer the world on my own if I
Speaker 2: wanted to, And that version of me is like a
Speaker 2: whole I would have a whole dumping ground of kids
Speaker 2: and have a foster home and be like you can
Speaker 2: all come live with me, like I'm here for the
Speaker 2: broken hearted. And it's something in that where I get
Speaker 2: the both same like energy, Like the thought of getting
Speaker 2: married and the thought of having a foster home with
Speaker 2: thirty children gives me the same energy. So I don't
Speaker 2: know what path I'm going to go on, but I
Speaker 2: know that there are options either way.
Speaker 3: Yes, I know that too for you, and I actually
Speaker 3: believe that whatever you say you're going to do, you're
Speaker 3: going to do.
Speaker 2: Yeah, because I think the biggest thing I'd love to
Speaker 2: achieve so in the UK we want to end transmissions
Speaker 2: of HIV by twenty thirty. I would love to be
Speaker 2: one of the names quoted as achieving that, Like that
Speaker 2: to me is insanity. If I can be one of
Speaker 2: the people who has done enough work to be she
Speaker 2: helped make this happen insane.
Speaker 1: Amazing in five years time.
Speaker 2: Yeah, and if I can then spread that across the pond,
Speaker 2: so like I'd love to do humanitarian work in Africa,
Speaker 2: Like I would love to go and really in a
Speaker 2: less developed country so they don't have access to medication.
Speaker 2: I would love to help. Yeah, and I would love
Speaker 2: to have that culture shock of And I think it
Speaker 2: would be because I would be sat there with medication
Speaker 2: in my back pocket that could save people that are
Speaker 2: currently dying. I would like to spread my activism further
Speaker 2: and not just stop in like the UK or wherever
Speaker 2: I'm going, but really go far afield and see where
Speaker 2: I can get the impact.
Speaker 1: Oh, ellie, the world wait, the world to oyster. Yeah,
Speaker 1: the world two oyster. And if you don't like oysters,
Speaker 1: the worldier chicken nugget.
Speaker 3: I mean, the sky has to fall for the chickens
Speaker 3: in order for us to enjoy the chicken exactly. It's
Speaker 3: just we have to accept that you are an at
Speaker 3: a delight. Thank you, such a force for good, such
Speaker 3: a piece of God. Emotional and thank you for joining us.
Speaker 3: Well I'm a little bit emotional myself. Thank you for
Speaker 3: joining us on No Filter. And I wish you health
Speaker 3: and wealth.
Speaker 1: In all of its forms.
Speaker 2: Thank you so much.
Speaker 3: Yeah, as someone who vaguely remembers the eighties and the
Speaker 3: panic and shame and misinformation and the bowling ball campaign,
Speaker 3: I kind of thought I knew about HIV and AIDS,
Speaker 3: but there was so much that I didn't know. Ellie
Speaker 3: feels wise beyond her years, and she is, and I
Speaker 3: know that you will have felt the emotion at the
Speaker 3: end of that interview. I truly believe that Ellie is
Speaker 3: going to make a huge difference in this world. Well,
Speaker 3: she already has, but using her voice to be an
Speaker 3: advocate and break the stigma.
Speaker 1: Is a gift to the world.
Speaker 3: I hope to check in with Ellie again and see
Speaker 3: how her year of Carrie or maybe Samantha, how that
Speaker 3: went down.
Speaker 1: Thank you so much for listening. The executive producer.
Speaker 3: Of No Filter is Naima Brown and the senior producer
Speaker 3: is Grace Ruvre. Audio production is by Jacob Brown and
Speaker 3: I'm your host, Kate Lane Brook.
Speaker 1: I'll be back in your ears next week.