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