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A young woman diagnosed with HIV at 21 in 2018 on her 1,199 days of silence, the book of lies she kept to track her cover stories, and why being called brave is part of the problem.

Summary

In the summer of 2018, Ellie Harrison was 21, working in London fashion, and ordered a routine STI test because she thought a break-up was coming. The clinic called it a false positive. It wasn't. She found out for certain on a Monday lunchtime, walking towards a Greggs in Birmingham, when 40 missed calls from an NHS number lit up her phone. She never made it to the sandwich.

What followed was 1,199 days - a number now tattooed on her arm - during which Ellie told fewer than ten people and kept a physical notebook of lies to remember which cover story she'd given for the daily tablet she took at lunch. She showered in water so hot it blistered her skin. She convinced herself she was the only woman in the world with HIV. When a boy she'd drunkenly told at a freshers' party spread her status across the university, it felt like the whole of Birmingham knew. Nobody came back with anything useful. They just said: that's really shit.

On World AIDS Day 2021, she filmed a video in her bedroom with a glass of wine, got too scared to post it, went out, got blackout drunk, asked a room full of people at an afterparty to watch it, and then put it on Facebook. By morning, her phone was unusable with notifications. She went on to work with the Terrence Higgins Trust and volunteer at the George House Trust in Manchester, where she met Paul Fairweather - the first person living with HIV she'd ever knowingly had a conversation with, four and a half years after her own diagnosis.

Key Moments

• [01:37] Summer 2018 - a routine STI test ordered as a precaution before an anticipated break-up, and the habit of regular testing that meant Ellie was checking for chlamydia, not HIV
• [04:28] The false positive - a clinic that reassured her it was probably a transport error, and the night out where she joked about her 30 seconds of fear
• [06:39] Walking towards a Greggs - 40 missed calls on a Monday lunchtime, the moment she didn't need the clinic to tell her what she already knew
• [08:12] "I didn't carry any of that knowledge with me" - taught about HIV at school, armed with none of it when it mattered. All she remembered was people dying in the 80s
• [10:04] The long corridor - the nurse who kept looking back to check she was still following, the refusal to sit down, and six panic attacks in the room where the words were finally said
• [13:42] Ringing mum and dad - parents hung over at an 80s festival in Levi's T-shirts, a mother who kept insisting it would be something else, and a three-hour drive to Birmingham
• [27:17] 1,199 days - the elapsed time between diagnosis and activism, the book of lies, and showering in boiling water because nobody said it would be okay
• [30:26] Freshers' week and the boy who told everyone - a drunken disclosure, a status shared across the university without consent, and the chaotic pub-to-pub mission to find out who knew what
• [36:03] The video, the wine, the afterparty - filming a disclosure video in her bedroom, being too scared to post it sober, and waking up to a phone full of missed calls that wasn't about a death
• [39:52] "Don't call me brave" - why Ellie believes the word reinforces the idea that HIV should be kept secret, and why talking about a thing that happened to her shouldn't require courage
• [41:53] The George House Trust and Paul Fairweather - volunteering before she'd ever accessed a service herself, and meeting the first person living with HIV she could sit across a table from

About Ellie Harrison

Ellie Harrison was diagnosed with HIV in August 2018 at 21. She is an HIV activist and peer mentor based in Manchester, working with the Terrence Higgins Trust and the George House Trust. She was inspired to speak publicly by the Gareth Thomas documentary, It's a Sin, and the work of Nathaniel Hall.

Resources

• Terrence Higgins Trust
• George House Trust — Manchester HIV support and services
• Positively UK — Peer support for people living with HIV
• National AIDS Trust
• The 2025–2030 UK HIV Action Plan

If you have been affected by the themes in this episode, support is available at tht.org.uk.

Mentioned in this episode:

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:: 00:07:05

Dan Hall

Welcome to HIV the morning after. I'm Dan Hall. I'm a documentary producer and director. I've spent my entire adult life watching ignorance and prejudice play out around HIV. And frankly, I'm tired of it. And I'm sure many of you are too. This podcast is an attempt to do something about that. By doing what I do best, interviewing people and letting them tell their own stories so I can make these episodes.

:: 00:38:05

Dan Hall

But I can't make people listen to them or find them on their algorithms. That bends down to you. Please rate, review and share. HIV the morning after.

:: 00:51:21

Dan Hall

Right then. Let's get started.

:: 01:02:22

Dan Hall

In August: 2018

:: 01:30:13

Ellie Harrison

Thank you so much for having me.

:: 01:33:06

Dan Hall

and take us to that summer of: 2018

:: 01:37:17

Ellie Harrison

It's one of those normal stories, isn't it? I was 21. I'd been working in London at this, an incredible fashion company. I was in a relationship. Everything felt so perfect. All of my dreams were coming true. I was I had this final year of university looming, so I knew I had to move back to Birmingham. I knew I had to finish my studies, and I just didn't really know if my relationship could stand.

:: 02:01:01

Ellie Harrison

Not just the distance that like the change of pace, like being uni is very different to working in 9 to 5 job. So just as a precautionary measure, I made the decision on the basis I thought I was going to go through a Break-Up to order, and I see I get.

:: 02:13:11

Dan Hall

To help people understand that better. Why did you feel that was a good thing to do at the end of the relationship?

:: 02:19:02

Ellie Harrison

It's just I guess it's something I'd always done whenever I'd sought partners, whether that be in long term relationships or just, you know, a one night stand. I had always taken the test, so I just got in the routine of it, and I guess I was pretty sure if I was going to go through this Break-Up, I was going to be a little bit sad.

:: 02:36:22

Ellie Harrison

That was every chance that I was going to go back to uni and have a little bit of fun and just kind of let my hair down. So I just wanted to be, I guess, safe and precautionary.

:: 02:45:13

Dan Hall

And I totally hear you on on that habit as well. The habit was I think it's a hugely important thing. And I remember way back in the early 90s, having it drilled into me by friends of mine who works in sexual health. Just go for an eye check-up every three months, whether you're in a relationship or not or wherever, just because of the level of sex I was having in the type of sex I was having.

:: 03:06:09

Dan Hall

They just said, do it. Do it as a habit. And I still do it now as a habit. And I've been in and monogamous relationships where I've had partners have an issue with that. They've been like, surely you should only do that if you're cheating on me. And I go, nope, it's non-negotiable. It's just a habit that I do.

:: 03:22:13

Dan Hall

And I think it's it is so important that we build it. We built into our sexual health habits such as this, just simply because there's there's so much shaming around going to CI clinics or going for Check-ups, which I think is ridiculous. And, and I think we can just bypass so much, certainly internally bypass so much of that shame by just making it part of a habit.

:: 03:43:14

Ellie Harrison

I think, especially when I was at university. Not that I never I mean, it's not that I didn't think I could catch HIV. I knew the it was a possibility. I just thought the chances were so incredibly low that the thing that I was most worried about was like getting chlamydia, because everyone used to joke about it all the time.

:: 04:00:15

Ellie Harrison

And I think I did have that ingrained fear of being like, I need to have this habit. I need to be safe. I need to be checking. But it was never HIV that I was probably checking for.

:: 04:11:11

Dan Hall

And I have to say, I do think chlamydia. It sounds like the daughter of a Greek god do all.

:: 04:16:11

Ellie Harrison

When you said, oh, that's kind of sexy, isn't it? I don't think I should be glamorising it, but.

:: 04:24:24

Dan Hall

So you got your home test kit through what happened next?

:: 04:28:16

Ellie Harrison

So it's one of the ones that, you know, you just send it off in the post. So I've done on my swabs. Done the thing that you send off, I don't say memorialise the day I was diagnosed, but it is a it is a calendar day that I always remember and I do something special on. But technically my doctors have me diagnosed three weeks before that day on the basis they go from the day that I submitted that first blood test.

:: 04:52:20

Ellie Harrison

So I think it took about a week and a half to get a text. And it was back in the habit where I think you've got like random text, as in when the results came in. So I've been like had a negative, I think, for syphilis or something like that. And then I was waiting on the rest of them to come and I didn't get a text.

:: 05:09:23

Ellie Harrison

I got a call. And I think everyone who's done STI tests know when you get a phone call, it's normally because it's something bad. So received this phone call and they just very calm at the time and just said, look, one of the results has come back. You just got a pop in. Again, I think I just assumed I had chlamydia, so I was a bit worried.

:: 05:29:07

Ellie Harrison

Went to the clinic the next day. I was, until I sat down. And you could just tell that, like, the vibes were a little bit off. And then she explained to me, she was like, look, you've had a false positive for HIV.

:: 05:42:18

Dan Hall

But she said you had a false positive for HIV.

:: 05:45:04

Ellie Harrison

He called it a false positive. Yeah. So she explained to me that, I mean, everything she said is actually incorrect, but I'll repeat it for the sake of the story. But she said it could have been the way the blood was transported because it's from the singer. Maybe I hadn't seen my single well enough, and all of these little markers could have potentially made it come back as a false positive.

:: 06:04:06

Ellie Harrison

Now, what I know about HIV now is the only way to have a false positive is normally if you've got antibodies for another illness, it can sometimes flagged that Covid was quite similar. So there are viruses that can flag out as HIV, but it's not technically HIV. But she reassured me at this point that it's highly likely you will take bloods in the arm, and I'll just get a text.

:: 06:23:07

Ellie Harrison

Everything's fine. So I left that clinic and I made I went on the night out and I made jokes about the fact I thought I had HIV for about 30s. I was like, there's 30s of my life. I was scared to think I had HIV and I don't how funny how now.

:: 06:37:02

Dan Hall

And then what happened next?

:: 06:39:17

Ellie Harrison

I think it would have been about a week later on a Monday. I at the time I just moved back to Birmingham. I timing like two weeks. And I was working in the warehouse doing a little like it was just like a shift manager role basically before I went back to uni. And I wasn't normally allowed my phone with me until lunchtime.

:: 06:59:10

Ellie Harrison

So I went off at lunch, picked my phone up, was walking towards a Greggs.

:: 07:06:12

Ellie Harrison

And was just going through like everything on my side. And I had. Honestly, it must have been about 40 missed calls from NHS number. And it left me a voicemail saying I basically needed to ring back as soon as I possibly could. So I called them walking towards Greggs.

:: 07:24:14

Ellie Harrison

And she then just said, look, we need you to come back in. And I went into full panic. So I never even had my lunch because I didn't make it to the correct. I just turned straight back round to walk to the office. And I bust into the office, crying my eyes out looking for my manager on I need to, I need to go.

:: 07:41:03

Ellie Harrison

Does it that point. I didn't need to go to that clinic to know what was about to happen. And I, you know, I mean, it's like the house of cards was falling and I knew what was going to happen.

:: 07:55:13

Ellie Harrison

I really perpetuated a lot of my own stigma and fear at that point, because I, I 100% was taught about HIV at school. And I say this a lot. I must have been it would have been in some sexual health class that I had, but I didn't carry any of that knowledge with me. I wasn't armed with any of the details about it.

:: 08:12:20

Ellie Harrison

So before I got to the clinic, I basically on Uber stroke test and I was 20 minutes early and they wouldn't let me in. So I sat I'm basically ranks ringing, my parents crying to everyone, but I was sat there thinking, I'm going to die. I was like, I didn't know that medication existed, I didn't know. All I remember is the like these scary things of people dying in the 80s.

:: 08:34:11

Dan Hall

So you said you called your parents. Was was this the conversation that you were having with them? Because many of my guests talk about the loneliness of having to protect people from disinformation, and it just sounds like it was so overwhelming for you. You just had to share it.

:: 08:48:11

Ellie Harrison

I'm a bit of a gob shy. And the way I'd deal with things is by vocalising them. I have to get things off my chest to, like, kind of watch. I ruminate on them. I just can't I can't seem to work out unless I say it out loud. And my mum and dad have always been incredible. Throughout my entire life I've had such a close relationship with them.

:: 09:07:08

Ellie Harrison

I mean, I joke about this a lot when I'm home, but like, my mum could probably tell you everything I've given a blowjob to, let alone have sex with. So we've always had that closeness and that kind of friendly nature that I never worried about telling about. It wasn't even a thought that crossed my mind. I just rang them because I needed my mum and dad.

:: 09:23:19

Ellie Harrison

And I told them they knew I had this false positive. They knew I was waiting for results. And ironically, they were really hung over at an 80s festival. Interviews, live t shirts as well. So we had to get changed before they could come to because I like this is not appropriate today. But yeah, I, I told them and I was like, look, I'm about to insist clinic.

:: 09:43:10

Ellie Harrison

And my mum kept reassuring me again being like it will be something else, like, oh, we got a really good idea, like it's not going to be HIV. And I was arguing with her on the phone because I was like, I've only tested for one. Like, I know you're trying to be encouraging, but like, I only I only took one test this time out.

:: 09:59:04

Dan Hall

So then the clinic opens and you go in and you're given your positive result.

:: 10:04:21

Ellie Harrison

Yeah. And I, I mean, I've really built this moment up in my head because I've had like, this journey to the clinic is South Side Way. And I'd gone and got a call, say, and I was in my head, I was like, I'm invading this waiting room for like 20 minutes. They're going to take the piss. Like, you know, you just have this fear of like, being like a fat in the waiting room, either.

:: 10:24:10

Ellie Harrison

That's fine. I've got HIV and everyone else is going before me, like, call people it, and what actually happened is, like, my arse had barely caressed the seat by the time my name had been called. So I literally walked in and her name sat down like Ellie Harrison. And I had to walk down this long corridor to get to the room that we were in, and I just listened to ask, kept looking back at me to make sure I was still behind, like.

:: 10:48:24

Ellie Harrison

The way she was looking at me, honestly, I could everything was very telling of what was about to unfold.

:: 11:00:09

Ellie Harrison

And we got in the room and I refused to sit down. And I was basically shaking. I always makes me emotional and I say this, I'm sorry if I get a bit like tearful, but, I just remember shaking, be like, tell me, like, just say it. Like just then she was just look at me go. I really need you to sit down.

:: 11:15:21

Ellie Harrison

I was like, I just need you to say it because, like, I can't get past this moment and we just get through it. And then eventually she said, like, I'm really sorry. You're you are HIV positive says, I then proceeded to talk about sex panic attacks like spot. I could sound I couldn't say it like I was just shaken.

:: 11:34:06

Ellie Harrison

She was trying to call people and potentially discussing calling an ambulance. I was like, God, don't do that. And it was just this intense panic I went into. I can't even explain. I was like, ventilating. She eventually she was telling me all this stuff about HIV, but, like, nothing was going in. She then encouraged me to try and get hold of my mum and dad.

:: 11:55:24

Ellie Harrison

So I rang my mum and dad and they were already driving. At this point. I was three hours away. They were driving towards me and I was like, I'm really sorry, but you are going to have to come to Birmingham. I need you to come here. And I said like, yeah, I've got it. I'm not just fine like it was a bag of sweet because like, oh, you go, oh.

:: 12:19:01

Dan Hall

Welcome to HIV. The morning after, I'm Dan Hall. I'm a documentary producer and director. I've spent my entire adult life watching Ignorance and Prejudice play out around HIV. And frankly, I'm tired of it. And I'm sure many of you are, too. This podcast is an attempt to do something about that by doing what I do best, interviewing people and letting them tell their own stories so I can make these episodes.

:: 12:50:01

Dan Hall

But I can't make people listen to them or find them on their algorithms. That bit's done to you. Please rate, review and share HIV the morning after.

:: 13:03:16

Dan Hall

Right? Then, let's get started.

:: 13:14:17

Dan Hall

In August: 2018

:: 13:42:09

Ellie Harrison

Thank you so much for having me.

:: 13:45:01

Dan Hall

and take us to that summer of: 2018

:: 13:49:12

Ellie Harrison

It's one of those normal stories, is it? That I was 21. I'd been working in London at this incredible fashion company. I was in a relationship. Everything felt so perfect. All of my dreams were coming true. I was, I had this final year of university looming, so I knew I had to move back to Birmingham. I knew I had to finish my studies, and I just didn't really know if my relationship could stand.

:: 14:12:21

Ellie Harrison

Not just the distance that like the change of pace, like being uni is very different to working a 9 to 5 job. So just as a precautionary measure, I made the decision on the basis I thought I was going to go through a Break-Up to order, and I see I get.

:: 14:25:06

Dan Hall

To help people understand that better. Why did you feel that was a good thing to do at the end of the relationship?

:: 14:30:22

Ellie Harrison

It's just I guess it's something I'd always done whenever I'd thought partners, whether that be in long term relationships or just, you know, a one night stand. I had always taken the test, so I just got in the routine of it, and I guess I was pretty sure if I was going to go through this Break-Up, I was going to be a little bit sad.

:: 14:48:18

Ellie Harrison

That was every chance that I was going to go back to uni and have a little bit of fun and just kind of let my hair down. So I just wanted to be, I guess, safe and precautionary.

:: 14:57:09

Dan Hall

And I totally hear you on on that habit as well. The habit was I think it's a hugely important thing. And I remember way back in the early 90s having it drilled into me by friends of mine who works in sexual health. Just go for an eye check-up every three months, whether you're in a relationship or not or wherever, just because of the level of sex I was having in the type of sex I was having, they just said, do it.

:: 15:19:19

Dan Hall

Do it as a habit. And I still do it now as a habit. And I've been in and monogamous relationships where I've had partners have an issue with that. They've been like, surely you should only do that if you're cheating on me. And I go, nope, it's non-negotiable. It's just a habit that I do. And I think it's it is so important that we build it.

:: 15:38:05

Dan Hall

We built into our sexual health habits such as this, just simply because there's there's so much shaming around going to see clinics or going for check-ups, which I think is ridiculous. And, and I think we can just bypass so much, certainly internally bypass so much of that shame by just making it part of a habit.

:: 15:55:09

Ellie Harrison

I think, especially when I was at university. Not that I never I mean, it's not that I didn't think I could catch HIV. I knew the LDC, it was a possibility. I just thought the chances were so incredibly low. But the thing that I was most worried about was like getting chlamydia, because everyone used to joke about it all the time.

:: 16:12:10

Ellie Harrison

And I think I did have that ingrained fear of being like, I need to have this habit. I need to be safe. I need to be checking. But it was never HIV that I was probably checking for.

:: 16:23:07

Dan Hall

And I have to say, I do think chlamydia always sounds like the daughter of a Greek God do all.

:: 16:28:06

Ellie Harrison

When you said, oh, that's kind of sexy, isn't it? I don't think I should be glamorising it, but.

:: 16:36:20

Dan Hall

So you got your home test kit through what happened next?

:: 16:40:11

Ellie Harrison

So it's one of the ones that, you know, you just send it off in the post. So I've done on my swabs. Done. The thing that you send off, I don't say I memorialise the day I was diagnosed, but it is a it is a calendar day that I always remember and I do something special on. But technically my doctors have me diagnosed three weeks before that day on the basis they go from the day that I submitted that first blood test.

:: 17:04:15

Ellie Harrison

So I think it took about a week and a half to get a text. And it was back in the habit where I think you've got like random text, as in when the results came in. So I've been like had a negative, I think, for syphilis or something like that. And then I was waiting on the rest of them to come and I didn't get a text.

:: 17:21:18

Ellie Harrison

I got a call. And I think everyone who's done STI tests know when you get a phone call, it's normally because it's something bad. So receive this phone call and they're just very calm at the time and just said, look, one of the results has come back. You just got a pop in. Again, I think I just assumed I had chlamydia, so I was a bit worried.

:: 17:41:02

Ellie Harrison

Went to the clinic the next day. I was, until I sat down. And you could just tell that, like, the vibes were a little bit off. And then she explained to me, she was like, look, you you've had a false positive for HIV.

:: 17:54:12

Dan Hall

But she said you had a false positive for HIV.

:: 17:57:00

Ellie Harrison

They called it a false positive. Yeah. So she explained to me that, I mean, everything she said is actually incorrect, but I'll repeat it for the sake of the story. But she said it could have been the way the blood was transported because it's from the singer. Maybe I hadn't seen my single well enough, and all of these little markers could have potentially made it come back as a false positive.

:: 18:16:01

Ellie Harrison

Now, what I know about HIV now, it's the only way to have a false positive is normally if you've got antibodies for another illness, it can sometimes flagged that Covid was quite similar. So there are viruses that can flag out as HIV, but it's not technically HIV. But she reassured me at this point that it's highly likely you will take bloods in the arm, and I'll just get a text.

:: 18:35:04

Ellie Harrison

Everything's fine. So I left like Sonic and I mate. I went on the night out and I made jokes about the fact I thought I had HIV for about 30s. I was like, there's 30s of my life where I was scared to think I had HIV and I don't. How funny. How?

:: 18:48:22

Dan Hall

And then what happened next?

:: 18:51:12

Ellie Harrison

I think it would have been about a week later on a Monday. I at the time, I just moved back to Birmingham. I mean, like two weeks. And I was working in the warehouse doing a little like it was just like a shift manager role basically, before I went back to uni. And I wasn't normally allowed my phone with man to lunch sign.

:: 19:11:05

Ellie Harrison

So I went off at lunch, picked my phone up, was walking towards a Greggs.

:: 19:18:07

Ellie Harrison

And was just going through like everything on my side. And I had. Honestly, it must have been about 40 missed calls from NHS number. And I left me a voicemail saying I basically needed to ring back as soon as I possibly could. So I called them walking towards Greggs.

:: 19:36:09

Ellie Harrison

And she then just said, look, we need you to come back in. And I went into full panic. So I never even had my lunch because I didn't make it to the bread. So I just turned straight back round to walk to the office. And I bust into the office, crying my eyes out looking for my manager.

:: 19:51:06

Ellie Harrison

I need to go. I need to go. Does it that point. I didn't need to go to that clinic to know what was about to happen. And, I mean, it's like the house of cards was falling and I knew what was going to happen.

:: 20:07:08

Ellie Harrison

I really perpetuated a lot of my own stigma and fear at that point, because I, I 100% was taught about HIV at school, and I say this a lot. I must have been it would have been in some sexual health class that I had, but I didn't carry any of that knowledge with me. I wasn't armed with any of the details about it.

:: 20:24:15

Ellie Harrison

So before I got to the clinic, I basically on Uber stroke test and I was 20 minutes early and they wouldn't let me in. So I sat and basically ranks I and my parents crying to everyone, but I was sat there thinking, I'm going to die. I was like, I didn't know that medication existed, I didn't know.

:: 20:41:15

Ellie Harrison

All I remember is the like the scary things of people dying in the 80s.

:: 20:46:07

Dan Hall

So you said you called your parents. Was was this the conversation that you were having with them? Because many of my guests talk about the loneliness of having to protect people from disinformation, and it just sounds like it was so overwhelming for you. You just had to share it.

:: 21:00:08

Ellie Harrison

I'm a bit of a gob shite. And the way I'd deal with things is by vocalising them, I have to get things off my chest. Like, kind of. Otherwise I'll ruminate on them. I just can't I can't seem to work out unless I say it out loud. And my mum and dad have always been incredible. Throughout my entire life I've had such a close relationship with them.

:: 21:19:03

Ellie Harrison

I mean, I joke about this a lot when I'm home, but like, my mum could probably tell you everything I've given a blowjob to, let alone have sex with. So we've always had that closeness and that kind of friendly nature that I never worried about telling about. It wasn't even a thought that crossed my mind. I just rang them off because I needed my mum and dad.

:: 21:35:14

Ellie Harrison

And I told them they knew I had this false positive. They knew I was waiting for results. And ironically, they were really hung over at an 80s festival. Interviews, live t shirts as well. So we had to get changed before they could come to because I like this is not appropriate today. But yeah, I, I told them and I was like, look, I'm about to insist clinic.

:: 21:55:05

Ellie Harrison

And my mum kept reassuring me again being like it will be something else. Like, oh, we got a really good idea, like it's not going be HIV. And I was arguing with her on the phone because I was like, I've only tested for one. Like, I know you're trying to be encouraging, but like, I only I only took one test this time out.

:: 22:11:00

Dan Hall

So then the clinic opens and you go in and you're given your positive result.

:: 22:16:17

Ellie Harrison

Yeah. And I, I mean, I'd really felt this moment up in my head because I've had like, this journey to the clinic is South Side Way and I'd gone and got a call, say, and I was in my head, I was like, I'm invading this waiting room for like 20 minutes. They're going to take the piss. Like, you know, you just have this fear of, like, being like, sat in this waiting room either.

:: 22:36:06

Ellie Harrison

That's fine. I've got HIV, and everyone else is going before me. I can't be bothered. And what actually happened is, like, my arse had barely crossed the seat by the time my name had been called. So I literally walked in and hadn't even sat down and like, Ellie Harrison, and I had to walk down this long corridor to get to the room that we were in, and I just listened and kept looking back at me to make sure I was still behind, like.

:: 23:00:19

Ellie Harrison

The way she was looking at me. Honestly, I think everything was very telling of what was about to unfold.

:: 23:12:05

Ellie Harrison

And we got in the room and I refused to sit down. And I was basically shaking. I always makes me emotional and I say this, I'm sorry if I get a bit like, tearful, but, I just remember shaking, be like, tell me, like, just say it. Like, just then she just look at me go, I really need you to sit down.

:: 23:27:17

Ellie Harrison

I was like, I just need you to say it because, like, I can't get past this moment and we just get through it. And then eventually she said, like, I'm really sorry. You're you are HIV positive says, I then proceeded to have about six panic attacks like spot. I could sound I couldn't say it like I was just shaken.

:: 23:46:02

Ellie Harrison

She was trying to call people and potentially discussing calling an ambulance. I was like, God, don't do that. And it was just this intense panic I went into. I can't even explain. I was like, ventilating. She eventually she was telling me all this stuff about HIV, but, like, nothing was going in. She then encouraged me to try and get hold of my mum and dad.

:: 24:07:19

Ellie Harrison

So I rang my mum and dad and they were already driving. At this point. I was three hours away. They were driving towards me and I was like, I'm really sorry, but you are gonna have to come to Birmingham. I need you to come here. And I said like, yeah, I've got it on. I'm not just fine.

:: 24:20:24

Ellie Harrison

Like it was a big as sweet as, like, oh, as you go, oh, hang up. And I was also so moody. And then my dad rang me back was. I'm really sorry. We'll get to you now.

:: 24:36:12

Dan Hall

I wonder why is, as human beings in the way that we think when there is something unsaid in a room and you know what is unsaid, and the other person knows what is unsaid, and the whole room knows what hasn't been said, it is still important for that thing to be said out loud.

:: 24:53:10

Ellie Harrison

I mean, I'd probably known at that point for at least two hours that I was HIV positive. I mean, I tested for one thing, they called me back and there was no way I was coming out of that room without HIV diagnosis. And I knew that, but I put such a linchpin. I think for me, honestly, I clung on to hope until I think it took me a good year to even accept the fact I was HIV positive, because every second I was just clinging on to this hope of like, maybe if she doesn't say it or should say something else like, I won't, this won't be happening to me.

:: 25:24:13

Dan Hall

But that's curious because you're sort of almost battling with your own denial, aren't you? You're wondering if your head is going. It can't be true and accomplished in the other part of your brain is going to say it, say it. So I know it's true.

:: 25:35:07

Ellie Harrison

Yeah. And honestly, just so the I got this diagnosis in the clinic the next day, they obviously referred me to a HIV clinic to go kind of get enrolled, get everything kind of sorted. And when I got to the HIV. So the next day they asked to retest me. They wanted to do the, you know, just the quick fingerprint test.

:: 25:52:02

Ellie Harrison

And even at that point I've gone, oh my God, thank God they're going to retest me because they don't think I've got it. And I was like, this is perfect. Like another one. I'd honestly, I think a lot of the stories I tell, I say I did it three times. I actually think we did it about 8 or 9 times before.

:: 26:07:03

Ellie Harrison

The woman made me stop, because I just would not accept that. It kept coming back as positive. I was like, we're going to do it again. Like I just couldn't. I was in such a state of denial that I would sign on to absolutely anything and everything to make it go away.

:: 26:30:12

Ellie Harrison

It probably will be the biggest thing that will have ever happened in my life. Obviously, that be better things in terms of if I get married or have kids, but in terms of a real change of every single thing in my life. Like I thought I'd potentially lost the guy that gave me HIV, I used to work with him.

:: 26:46:08

Ellie Harrison

So I couldn't go back to that job. My relationship was falling apart. I had to go back to uni saying like a broken woman, my entire life changed. All because someone told me that this invisible thing actually does exist.

:: 26:57:13

Dan Hall

er that? Like what were those: 1199

:: 27:17:03

Ellie Harrison

a tattoo on my arm that says: 1199

:: 27:41:04

Ellie Harrison

The loneliest, the most I can't I say it to people, but like, I had to drag myself through hell and back to be the person I am today, because that diagnosis just stripped me and I know that I let it happen. I like I think I beat myself up a little bit because I say like, I could have done it better or I could have done it sooner, but I just couldn't get past it.

:: 28:02:13

Ellie Harrison

I couldn't understand how my life could carry on.

:: 28:06:06

Dan Hall

So do you think a lot of that was from your own stigma? Do you think a lot of the the, the sense and the challenges were that you were maybe had a shitty attitude towards yourself?

:: 28:19:03

Ellie Harrison

Yeah. I mean, my lack of knowledge around HIV didn't help at all. I think my incorrect, the stigma that I was putting on myself and I joke about this all the time. I'd convince myself that I was the only woman in the whole world that HIV like. That's how I felt. So I wasn't going to any of the groups that I'd been offered.

:: 28:36:13

Ellie Harrison

If I'm honest, the clinic could kind of discourage me from going to them, because I think my big feeling was why it happened to me. And they were worried that a lot of the groups that they had were just they were, but majority of them were gay men. And I think they were worried it would like to pitch like that.

:: 28:50:19

Ellie Harrison

But I even when I was telling people the conversations I was having slowly with my friends and I built up my courage, is people were affirming everything that I was worried about. No one was actually countering my opinion and going, it will be okay, people will going, that is really tough. Like, I don't know how you dealing with it.

:: 29:07:05

Dan Hall

tuff up and I love this isn't: 1982

:: 29:21:21

Ellie Harrison

It's weird right? The living with HIV, it's never bothered me. The taking medications, actually, it's never been the issue. I knew pretty quickly that I wasn't going to die. I know I could take this tablet, everything was going to be fine. The thing I couldn't get past is the fact that I felt like the world's biggest leper. I was like, no one's ever going to want to be with me.

:: 29:38:10

Ellie Harrison

I felt filthy, like I used to shower and boiling water to the point my skin blistered. That's how, like, dirty I felt. And it's so sad that I did that to myself, but it's because every person I told was just saying, yeah, that's really shit. No one was going. It's actually not that bad. You can't pass on.

:: 29:56:16

Ellie Harrison

People were going, I actually don't know how I would navigate that.

:: 30:05:10

Ellie Harrison

I got diagnosed in August, went off to university in freshers week. I told one of my best friends, I'm still my friend's mom now. She reacted really, really well. Her dad works in pharmaceutical. She understood HIV. She was like, you're going to be fine. She appreciated it was difficult, but she was, you know, quite supportive. I then told probably only like 8 or 9 people it wasn't that many.

:: 30:26:13

Ellie Harrison

And the only thing I asked everyone is just please don't talk like don't tell your boyfriend starting friends. I can't, I can't have everyone knowing. I just need I need to be able to talk about it in this group. But other than that, that's all I want. And I actually didn't know. But I in freshers week, when I was back in September, but only had HIV for what, like two, three weeks?

:: 30:47:17

Ellie Harrison

I'd gone to a party, I'd got really drunk. There was a boy that I'd been a bit on and off with for a few years. We ended up going to his room, and I actually don't remember, but I told him because I think we kissed or something like that, and I panicked at, like, the interaction being like, oh my God.

:: 31:01:23

Ellie Harrison

I've had actually fruits like get away. I don't know what to do. I love that. I've told him I've got HIV and I'm like, absolutely liked it. From this party running to my friend Caitlin's arms and then told her to and I thought, I just told her, I don't remember telling this boy. It turns out I didn't know he had then gone and told a lot of people, people were also fine.

:: 31:25:00

Ellie Harrison

I mean, what basically happened, I think it came to like May, I assumed I was getting better. I assumed not a lot of people know. We sat in a beer garden. One of the rugby lads came over and he kept asking, how's all right and can't be like you going, I know you've got going through, etc. I like just it just twitched like something in my head didn't feel right and I was like, he knows.

:: 31:45:24

Ellie Harrison

So I then saw a corner and people go, and what do you know? And people started admitting the fact that they knew, I then went on an absolute chaotic mission to the point I'm running around pubs and cornering, actually. Well, ask them what they know and how they know. And it turns out that he had he had told someone, people that overheard the conversation in the process of me getting angry at people, knowing people at that, also overhearing and finding out from that everyone is that arguing over the fact that I'm really upset and that I'm arguing is also meeting the other people, and I'm hearing them arguing and finding out, and it

:: 32:19:05

Ellie Harrison

just exploded. And it felt like everyone at university know the whole of the fucking city centre of Birmingham know that it was what it felt like to me. And no one was saying nice things. They weren't going, look how great she's doing, like she can't pass it on, etc. they just go and at least got it, at least got on Sky.

:: 32:38:02

Ellie Harrison

And it made me so really small, like really, really insignificant and small and like, I just, I just honestly, I felt like I've no one because even though my friends were being supportive, my friends are also friends of the people that are doing this to me. And everyone's a bit conflicted because I don't think people thought what they were doing was wrong at the time because they were like, oh, I know we discussed it, but it's not that big of a deal.

:: 32:59:04

Ellie Harrison

And they didn't realise how much of a problem mental toll it was. I'm going to have a may. So I just because we don't have the community I surround myself with now a very different people and I've exposed to a lot of people living with HIV now. I need that exposure, I think, to get better because I needed people to kind of give me that little bit of hope that it was going to be okay, but also be educated enough on HIV that people didn't care.

:: 33:26:04

Ellie Harrison

And I think that's what all of my friends and the people in my social circles were maybe lacking, is they didn't know anyone else with HIV. It was just me, and therefore they had no comparison to be like, it's going to be fine.

:: 33:54:03

Dan Hall

And you make me think of a couple of previous guys that I've spoken to. The first one is Lawrence, who's episode two of this series, where he talks about how he felt incredibly toxic as well and how his HIV, which he tested positive for in the 80s, led him to incredibly dangerous and negative relationships because he would only be with people who he felt he wasn't, in his words, a burden to that.

:: 34:23:16

Dan Hall

He wasn't dragging them down to his level because he sort of felt like he should be grateful for any attention or any affection he got. Doesn't matter how shitty the person was that it came from, because he just saw himself as this wandering, toxic nothing.

:: 34:40:12

Ellie Harrison

Yeah, and you know what? I don't think I've ever really discussed this before, but I think what I've learned over the last eight years is I was seeking sexual gratification from anyone I could on the basis I needed people to want to have sex with me, because that felt like my biggest barrier was how am I going to go into like, relationships, etc. if I don't feel like I wanted?

:: 35:02:19

Ellie Harrison

So I was just going. I mean, I didn't date a lot. I took quite a while off to start with because I just felt so like filthy. But when I finally got into it, I didn't really care of people. And also because I just liked the fact that they wanted to have sex with me and they didn't care.

:: 35:18:07

Ellie Harrison

That was enough for me. Which is quite sad, because it does mean that, like, I probably did get into some toxic situation ships or hung out with people that I probably shouldn't have just because they were willing to have sex with me.

:: 35:49:16

Dan Hall

So this: 1199

:: 36:03:13

Ellie Harrison

So my dad likes to take credit for that. Well, the day I was diagnosed, he made a lot of, very poignant jokes, one of which he kept telling me to stay positive, which at the time wasn't funny. And now I've kind of taken it in my stride. But he also said to my mum, whilst he hadn't even seen me yet and they were driving towards Birmingham, to come kind of comfort me, and he said I think one day she will want to talk about this and like she will, she'll use it to help people.

:: 36:30:17

Ellie Harrison

And me and my dad had had lots of conversations over the years about when I'm ready. I did want to talk about it. And I'd kind of been inspired by the Gareth Thomas documentary. I'd come out, of him, you know, talking about diagnosis and explaining kind of a lot of things about living with HIV. It's a Sin had come out, which was so powerful.

:: 36:50:09

Ellie Harrison

I'd also become such a fangirl of Nathaniel Hall. I love it now because he's my really close friends. But we actually met because I was finally over the moon. I was like, oh my God, you're so incredible. But I'd really been inspired by all of these powerful pieces of media, and the only thing I felt was still slightly messaged is young female representation in this community, because I'm not the only female in the world living with HIV.

:: 37:17:23

Ellie Harrison

In fact, I think it's like 60% of the people living with HIV are women. I think I wanted to go online and be able to find someone that would make me feel a little bit more normal, like everything was going to be okay. And while I couldn't find out, I guess I just became her. And I just decided that I was ready to join this conversation.

:: 37:37:15

Ellie Harrison

So I oh my God. I filmed a video for my bedroom drinking a glass of wine. I was too scared to post it. So I went out, got absolutely blacked out, drunk, and ended up going to an afterparty. And it's who I am. I ask everyone to watch the video and then I posted it on my Facebook.

:: 37:54:12

Ellie Harrison

By the time I woke up in the morning, I thought someone had died because of the amount of missed calls and notifications that were on my phone. And obviously I came to realise that it was people's incredible reaction to this video. I then moved it to YouTube, but it kind of kept going, and from that it just kind of snowballed that like I felt like I had to keep talking about it.

:: 38:16:02

Dan Hall

But that's a huge jump from silence to going, fuck it, I'm going to, I'm going to social media. And like, why do you think there was no middle ground? And this again, I think this is really interesting because, Lawrence, the guest I just spoke to you about it, talked about being in a toxic relationship. He's decided to record an episode of this podcast as his coming out about living with HIV.

:: 38:41:21

Dan Hall

I think it's a really interesting thing that there isn't the sense of gradually telling more and more people that actually, for you, it was, I'm going to stand at the end of the diving board and I'm going to jump in.

:: 38:54:06

Ellie Harrison

I think I've had enough. I think that's what it was. This was I think it was three and a half years. It was 20, 21 when I posted this video. And it was three and a half years of me lying about doctors appointments or the tablet. I always take one at lunchtime. On the basis I got diagnosed before uni, I was, I mean, I was going to go on chaotic benders basically to deal with that, and I couldn't guarantee that I was going to be off at a certain time in the morning.

:: 39:18:13

Ellie Harrison

So I just locked in lunchtime and obviously in the world of work, I then take a tablet in front of everyone every day, and everyone kept asking what it was and I just kept lying. I had a book of lies that I used to write all my lies down, and because I couldn't keep up with them anymore, and I think it got that suffocating.

:: 39:37:05

Ellie Harrison

But I just had, I had enough. I just wanted it to be out, that I didn't want to live in secrets anymore.

:: 39:43:07

Dan Hall

It sounds like you're not the sort of person for someone to come up to in the pub and go, excuse me, you, Ellie Harrison, I think you're so brave.

:: 39:52:11

Ellie Harrison

Oh, so funny you say that. I hate it when people say I'm brave. Like it's my. I know people are just being nice, but like, I always I don't know what I did that people think it's great because all I've done is talk about something that happened to me. That's not bravery. I should. I have free will and I should be allowed to do that.

:: 40:10:00

Ellie Harrison

The calling me brave, I think, stigmatises the fact that we still shouldn't be talking about HIV in the fact it's a dirty word. I'm not doing anything brave. I'm just proving that this this is completely acceptable.

:: 40:20:13

Dan Hall

I think that's a really, really good point. And Nikolai tiny Alanya, so his episode is in series two. He said something that really, genuinely, really struck me. He talks about the risk of something maintaining being called a taboo. If we keep talking about it as a taboo, he's like it can start to become its own self-perpetuating thing. And I think you're absolutely right.

:: 40:41:02

Dan Hall

And what you're saying about why would people call something brave if they didn't also then think that that's tied in with that something that should be kept secret?

:: 40:49:14

Ellie Harrison

Yeah. And I, I always whenever people say I always explains to them and they're like, oh I never thought about it like that. And I'm like, but that's the issue is your instinctive reaction when you see me do this is to go, oh my God, she's so brave. Because you also agree with the fact that I shouldn't be talking about HIV.

:: 41:24:12

Dan Hall

And taking us back to the times before you then make these very public declarations before you went on TV and you didn't access any of the services that were potentially available, and you had moved to Manchester by this point. I think it's really curious that with the George House trust, which is a brilliant organisation in in Manchester, that you never used any of their services when arguably you should have done it, in fact, in your first engagement with them was as a volunteer.

:: 41:53:22

Ellie Harrison

ter. When was that? September: 2022

:: 42:18:20

Ellie Harrison

I was still very isolated. Moved to Manchester, working with the Terrence Higgins Trust. Ended up going on live TV on world Aids day, and after that I was like, do you know what? Maybe I should reach out. I'm in Manchester at the George House trust here. I'll reach out and see if I can volunteer, maybe do a bit of speaking.

:: 42:36:06

Ellie Harrison

I met one of the co-ordinators and she was like, do you want to do maybe some of the other staff peer mentoring? Let's get you on board. And I was like, yeah, absolutely. Like, let's let's go for it. And she was like, okay, great. I'll introduce you to Paul Fairweather, who is one of the six founding members of the George House trust back in the 80s.

:: 42:52:23

Ellie Harrison

And he then we went for a couple. I think it's it's a cup of tea in the office. And it wasn't till we sat down this cup of tea and he was like, let's. He basically shared his HIV story with me and his diagnosis and he said, you know, do you can do the same if you feel comfortable.

:: 43:08:10

Ellie Harrison

And at that point, I confessed to him and said, you're actually the first person I've ever met living with HIV that knowingly, I can always have a conversation with. And he was like, if I take your data four and a half years now, you've been on TV, you've been talking about it, why haven't you met anyone? And I said, I think I was still I had this incorrect opinion that like, it was going to make me feel awful and it was going to make me, I don't know, like, how is this why me feeling come back that I'd only just managed to get over and God, how wrong I was.

:: 43:39:24

Ellie Harrison

Like the most beautiful thing I've ever given my life is the incredible people living with HIV that I now get to call my best friend.

:: 43:48:17

Dan Hall

om and it just be like a late: 1980

:: 43:58:08

Ellie Harrison

Yeah, I think also, this is such a weird thing to admit. I just assumed that everyone else was going to, like, could've been diagnosed in the 80s, so they were all going to be just, I mean, slightly older game better. I didn't think there was going to be people my age or like me, I just just had this weird opinion that like the 80s, HIV had just stopped, everyone had got it, and they were now living with it.

:: 44:19:20

Ellie Harrison

Fine. But it wasn't getting spread any more, and it was just a weird thing that happened to me. And I was like an abnormality. When I first got into activism, I think I always used to say like, that helps one person. That's enough for me. And I know from my Instagram DMs and the private messages that I have from women that I have far exceeded one.

:: 44:39:15

Ellie Harrison

I'd imagine I'm in the thousands by now of people that I've been able to help or save some of them, which is beautiful, but at the same time is this reminder of it isn't just gay men from the 80s. I have HIV like HRT doesn't give a fuck what race you our gender sexuality. It doesn't. It's a disease.

:: 45:00:09

Ellie Harrison

And it affects absolutely everyone. And it is important that I think particularly with like young women and HIV, there is still probably thousands in the UK.

:: 44:02:13

Dan Hall

If you were moved or informed by what you heard today, please help spread the word. Subscribe to HIV the morning after and leave a rating and a review. It makes a huge difference in helping others to find it. Your support helps to amplify these experiences. If you'd like to get in touch, you can email me at HIV the morning after at gmail.com.

And remember, if you encounter HIV stigma and a bar, call it out. If you encounter it at work, call it out. If you encounter it online, call it out. Because if you don't, you're part of the problem.

The theme tune is by Paul Leonidou at Unstoppablemonsters.com, and many thanks to Moray Laing for his continued support. And thank you for listening. Join me next time for another important conversation on HIV the morning after I've been Dan Hall.