Should I Delete That? - I was diagnosed with HIV at 21... with Ellie Harrison

Episode Date: November 25, 2024

Ellie was a 21 year old university student in a long term relationship - then she found out she was HIV positive after taking a home STI test - and her life changed… and in her opinion, it might have been for the better. Ellie is incredibly inspiring and she is a force for change - she tells us her story and how it drove her to become an activist, raising awareness and breaking the harmful misconceptions a lot of us hold about HIV. Be prepared to be blown away - Ellie is an amazing person and you are going to love this interview. Follow @elliemharrison on Instagram!World Aids Day is on Sunday 1st December 2024 - https://worldaidsday.org/ Email us on [e-mail] us on Instagram:@shouldideletethat@em_clarkson@alexlight_ldnShould I Delete That? is produced by Faye Lawrence Music by Alex Andrew Hosted on Acast. See acast.com/privacy for more information.

HIV is the best thing that ever happened to me and it's given me so much in life. However, it did take part of my life. Hello, and welcome back to Should I Delete That? I'm Alex Light. And I'm Ben Parkson. Welcome back, Al. We missed you last week.

Oh my God. What an idiot. I'm so sorry. How was Paris? I know you're itching to tell us. Thank you. Thank you so much. I'm going to go straight.

in my god I went to Paris not sure if everyone remembers but I once lived in Paris and every time I mention it's just getting further and further away and now it's like it's a long time ago since I lived there it's like 15 years oh my god yeah so

I know I know I was a little Robin I think cute little bird anyway I can see how old you've got it's been 15 years since he lived in Paris and there's a nice little bird out the window to make a note of things are rapidly going downhill guys um i went to paris had such a good weekend

honestly absolute ball apart from my awkward all good i organized the weekend and my mom and dad were there which was hilarious um it was my sister's hand do with my with my dad i had some questions about that please i have one question about that why? Why is dad on the hen do? Did he ruin the vibe? Because I feel like you can't have like willy straws and like bottlers in the bath and like, do you remember at my head in the breakfast? We just talked about like anal beads for like the whole time. I feel like that's kind of off the table when your dad's there. That's off the table when my mum's there for a start. My mum will kill that vibe instantly. So it was my dad wasn't the problem. It was it would have been my

mom. I'd much rather talk about that stuff in front of my dad than my mom. As we know, famously, Norma, very prudish, birthed as all wearing dresses. But, oh my God, you won't believe it. So I organised the weekend and I'd done everything apart from, Sophie, who is the, who's the bride, really wanted to do a show on Saturday night. And I haven't been to a show in Paris, despite, you know, her just like being practically basically a citizen but Ellie

Sophie's twin had and she was like oh I've been to a couple shows try this one or try this one or the crazy horse is really good it's like a cabaret show so I was like okay looked at them like checked out prices

of them all and like availability and I was like the crazy horse works best so I'll just book that didn't look into it completely did not look into it and even in the run up did not look into it. So we just went to the crazy horse, all dressed up, all excited for cabaret. I kind of imagined

it to be like, what was that show that we went to? Maddie Mike? No, for Alex's, um, 30s. Leo. Leo. Leo. I imagine it to be like that. Like loads of different acts, like dancing, singing, you know, like fire breathers. I don't know, stuff like that. Cabaret. It was not that. You anticipated cabaret. It was not that. It was a very sexy show. How sexy. Tits. So many tits. Guess where I was sitting? Tit height? Front row. No. No worse. Way worse. Next to my mum. Next to my mum. And next to my dad. In between them? I, in between them, wanted to die. No! No! The whole time, my mum said to me, why did you bring us here? Why did you bring us here? As there was like, because there was, there was tits and there was all so funny.

Like, it kind of, they got progressively more nude, but at the end, there was funny. actual funny. And I was like, honestly, ground, solo me up. There were no willies, no men. This is what I'm talking about. This is, this is, this is sexism. This is the gender imbalance. This is what I'm not okay about. Uh-huh. I'm sick of seeing boobs and panties. I want to see willies. I want to see testicles. I want to see all of it. And I bet Norma does too. Yes. That was a sentiment echoed by my sister, Sophie, who texted me halfway through saying, where's the cock? Where's the willies?

I was like, fair question. There is none. There is absolutely none. There is just loads of tits and loads of labia. Oh, God, I'm sorry I said that. There's a lesson, there's two lessons here. One, research of shows before buying tickets. But mostly two, maybe, like, separate the hindoos from your parents. Yeah, you have a point.

You have a point. Have they come on all your hendos? Mum did. No, dad didn't know. Dad was kind of there to accompany mum to Paris, really, basically. That's so fun. But we did a pink limo. truly a pink limerourne in Paris sounds trashy and it was and it was perfect and it was like

one of the best things I've ever done I'm so pleased does that mean you have no bards this week oh no I've got bad but no no don't rob me of my bad um last night me and you we went out we went to a dinner a brand dinner was loxatan yeah it was absolutely beautiful yeah it was a Christmas dinner and it was decorated like it was an absolute festive dream, just gorgeous, a very fancy swanky hotel in Covent Garden. The dress code was festive and it was like, we want you to be casual first and foremost, but it is festive, like you can go all out, sequins, sparkles. Yesterday was not a great day in terms of, there's just a lot going on, and I had to take Tommy to the doctors again, he's got bloody bronchitis now. It's like,

he's getting every, every bug that the winter has to offer us, which is fab. So my head wasn't in the game, but I really wanted to go, I really wanted to support, well, the brunties. Brandon and Jenny, who's the PR, who I just love. She's so nice. And I also wanted to light out. I wanted to go out. So whatever. Anyway, so I had about 20 minutes to get ready and 20 minutes to decide what the hell I was going to wear. And I was like, what have I got that sequined? And my eyes went to, the only thing that I've got that sequin, which is a sequin skirt, silver sequin skirt, which is very cool and I love it. However, I didn't know what to put on top to go with it. I pissed around for a few minutes and I was like, I don't have time for this.

And then I pulled out a black and white striped jumper. I thought it looked quite cool. but I got there and I felt so self-conscious because everyone was really, really dressed up and it was like knitwear, just didn't feel like the vibe. Anyway, I felt self-conscious, but that isn't my bad. My bad is that I put a picture of it on Instagram. I said, like, oh, put a picture of my outfit and said, I'm off to a brand Christmas dinner.

The dress code is festive, so the sequined skirt came out. Someone replied this morning with, sorry, but, new message, you really went out in that jumper, dot, dot, dot, question mark. Oh, my God, what? I know. What a horrible person. How mean is that? I want to go and just block them.

That's not... That's not punishment enough. I want to go and say, I want to go and sorry about them about something. That's so cute. So I said, I said, what do you mean? Because I was thinking maybe I've missed something and she said, sorry, that was actually rude of me. I thought you changed into something else and wanted to just show the skirt, which is really nice. But I don't think it goes with a jumper.

I follow you and appreciate your content. I know how stylish you are and we're sure that you change into something else. I'm actually speechless. She was sure that you'd change into something else. You've let her down that catastrophically by staying in your disgusting white and black striped jumper. That is so mean. Isn't that mean?

And then I was like, oh, okay, well, yeah, I did go out like that. And she says, in my eyes, that jumper did not compliment you, but it shouldn't have come out from me in that way. No. I don't think it should have come out from her anyway, let's be honest, but whatever. Oh, my God. So now I just hate myself. I hate my life.

and we got fancy pictures taken last night that are going to be sent to us today and I think I'm just going to delete the email before even looking because I just feel very self-conscious I think you should send them to her and say No

Any further notes Oh no I'm so sorry I hate that for you No that's that's fine That's okay I just yeah just never want to be seen again

But that's fine Yeah It's all fine Yeah I'm fine I feel like I've got too much I've got too much just going on that I can't I'm actually okay

I'm going to just I'm going to just do a quick roll the decks of some bad things one obviously I've been looking forward to the end of this pregnancy for the whole time that I've been in it

it's coming and people could go so you're ready have you got hospital back have you nothing nothing nothing like not even miles away

it's bad and obviously I've got to the point in the pregnancy where I'm having the dreams where it's like she could come early And we were at that long-stown event last night and so people are like, oh, she could, you know, because they're monitoring her now because of the sickness. So it's like, well, she could. And I'm like, no, no. No, she can't. Stay we are, bids. So careful, you wish for there on a, on your, on your, on, wishing it, time to speed up. Because when it does, it's like, well, hang on, slow down.

So, yeah, that's, that's a low-key stress that exists consistently. Also, like, I'm just generally very stressed and overwhelmed with the amount of work that we have in the pod. serious and everything and I'm not handling it perfectly. I think it kind of was encapsulated perfectly when we were in the studio on Tuesday and I walked to prayer because the thing about HG, the really conflicting thing is ironically the nausea is at its worst when you are hungry. So you kind of have to get the balance right all the time of not being starving but not overeating because if you put too much in, then you'll throw it up. So you've got to consistently put in bland, boring foods. interviews had run over. Our prep was closed. We had to go to the further away prep. You and Faye

were like, fuck it, I'll get a falafel. I was like, fuck a falafel. That will literally send me right away. Can't do that. I need to go prep. I need to go blam. So all the way to prep, waddling. Forget how pregnant I am. In my little boots, having bracts and hicks the whole way, crying like a normal person. In the pissing rain. It was pissing down. Pissing. It was sleep, really, snow. And as I was walking back, my paper bag from prayer broke because it was all wet. And all my bits and bobs, including the cookie that I had got, landed in the puddles. And I had, the ground is so far away from me at this point. I not only did I have the indignity of my back having broken and my cookie landing in the puddle and my lunch just rolling away from me.

But I had to like hunker down, like all of me. And I like with both of us, you know, we're big now. Squat. And going down is one thing, going back up again. That's hard. It was just, it was a commotion. Everyone was on their little siggy breaks. It was lunchtime.

I was like, oh, I'm a, I'm, I'm, I'm, at the world. And that just encapsulated it. I was like that, so that encapsulates the week, really. That's just the story. My, I guess bad to awkward, no, awkward. I think I'll take it as an awkward. It was last night when we went to the Lox 10 of M, which, again, loved it. Felt the same as you needed to see Jenny,

because I haven't seen this since we've been with our babies and, like, she's lovely. And I'm so pleased I went, obviously, I've got through you as well. It actually wasn't perfect for me because I did wake up at two in the morning. being sick in my own mouth, which is probably the worst way a person can wake up. And I say that as someone who had someone else be sick in my mouth about a month ago as a wake up. And I would take my child being sick on my face than me being sick on my face as it transpires. Anywho.

So it was a high risk, high reward evening. But on the way there, lots of town really kindly organised me. They know it haven't been well. So they were like, we'll send a cab and pick you up, which is so nice. So I was in a cab, and it was in Addison Lee, and the driver was just playing Candy Crush the whole way in. And I was like, that's so bad. I hate this. And I was like, oh, you know what?

Like, I'm such a people pleaser. I could be in a car accident for you, but I can't put my daughter in this position. Like, I am too pregnant for this. So I kept, like, trying to, like, get his attention. Because we kept being hooked up to that. Like, we missed all the lights went green and we were still sitting in the car. like he was in he was he was he was playing candy crush he was not driving the car um and it wasn't great anyway and so eventually i need to start a conversation with this man so that i can you know

like steal his concentration a little bit so we started having a conversation and he said oh you're going to a loxetan event and i was like yes and he was like i've got a business idea about loxetan and i was like yeah so i want to open a restaurant but like within one of their shops do they have one in Mayfair. And I was like, I don't know. I don't know. Why? And he was like, yeah, so, you know, Ralph Lauren have this anyway. And, like, he was like really pitching it. And I was like, actually doesn't sound like a bad idea. Good luck. No, sounds great. And then he was like, can I, do you know who I can talk to about this? Like, would you be the person to talk to? I was like, I am not the person to talk to. And he was like, well, do you know

the person? I don't, uh, I'm not sure. And he was like, well, well, the person. I don't, I can't, I can't give you the answer on that and then it's like well the person be it's at the Christmas party the person will be at the Christmas party I was like yeah I suppose probably I don't know I don't know and then he's like can I come in can I come in and talk to them and I was like I don't know no I don't think probably not and it was horrible and then I was like but if I let this conversation end then he goes back to Candy Crush will probably be in a car accident so I had to keep going and then like not invite him to the party which was horrible because he He'd literally asked to come.

And then I got his name, and it was, it's called Adam. His birthday's Christmas. Obviously, he's birthday's Christmas day. And he was asking, yeah, he was asking to come in. It wasn't great. I mean, it was adorable. I would have died if you'd have walked in with him. I'd be like, this is, he just drove me here and he's got an idea to pitch.

Can I speak to someone from the Loxetanine? It is, if I'd have known, if I'd have thought, if I'd have known who to take it to, but also I was like, it's, you'd have let him come in yeah but also it's a risk you know like reputationally it's a you know like I'm putting Adam's business idea it's a risk in if it doesn't work out that's kind of on me I've ruined someone's Christmas party well you did a good job and we had we did have a nice time it was so lovely wasn't it it very nice apart from my outfit um so this week's guest we've got an incredible woman

this week she's called Ellie um she's a campaigner and HIV campaigner and she was diagnosed with HIV at the age of 21 and she very kindly and bravely like I'm always conflicted using that word bravely to refer to people telling their stories but given the stigma that still very much exists around HIV I think bravely is an appropriate word bravely came on to share her story with us break down some of the stigma and some of the miscon and debunk some of the misconceptions and what a wonderful woman. What a wonderful woman. So inspiring, which again is another word overused and whatever, but she genuinely was. Her energy was just impeccable. Obviously

the second she walked in, it was just like, oh my God, we're obsessed with you. And the feeling maintained throughout the conversation and in the days I've followed it. So we're really excited that you guys get to hear this now. Without further ado, here's Ellie. Hello. Hi. How are you? How are you? you. Yeah, I'm good. Thanks. Thank you so much for coming to speak to us. I was just saying to you, which I don't have to repeat, before we started recording that I had read your story in the Metro. And I hadn't realized that they'd republish it a couple of times. I thought it was new news. But I read your story about being diagnosed with or finding out the U.H. I'd be positive when you were 21. And it was just, you tell the, you tell it very bravely, very honestly. But it's so. such an important conversation, because as is cited throughout that article, you see that how much more common HIV is becoming in the UK, particularly among younger people and straight people as well as gay people. And like, we've got a lot of misconceptions. We've got a lot of

assumptions people make. And I think what you're doing to break down barriers and stigma is really cool. So thank you for coming to speak to us. I mean, if it's all right with you, it would be amazing to hear what that was like at 21 years old. I'd been in a long-term relationship, so I'd had a boyfriend for about a year and a half. I had to move back to Birmingham, so I lived in London at the time. I had to move back to finish my studies. And I thought our relationship was going to have a lot of strain. He was older than me.

I was ready to go back to uni. I just didn't see how it was really going to work. So before we broke up, I decided to get a home SDI test, kind of preempting that we were going to have a breakup and I was going to go back to university, didn't expect anything. So I had no symptoms. I wasn't kind of going in because I imagined,

it was ever going to happen and originally they called me in and said there's been a one of your test has come back can you pop in and I thought straight way I've got chlamydia like great um went in and she explained it was a false positive for HIV is what they called it to start with right and because I'd done the test at home and you clean and prick your own finger there's a lot of factors that can happen to that blood so it could have been that it coagulated the marker could have been incorrect for whatever reason it could have come back as a false so they wanted to take blood from my arm She explained to me at this point that the chance of me having HIV were slim to none. She was like, you've been in a long-term relationship, your last negative test was a year ago.

It's pretty much looking like it was just a clerical error and it will all just blow over. And a week later, they just called me and said, can you come in now? So I didn't really need to be told what was about to happen to kind of figure out that I was about to be told I was HIV positive. And I was just shocked, I think. Like I never in my wildest dreams would have imagined that I could have caught HIV. I didn't even realize I'm really at risk of catching it. No, I wouldn't. I'd thought so particularly given as you were in a relationship.

Yeah. How did that transpire? I always say to everyone, I'm 99% positive. I know where I got it from. In the UK, it's pretty much a requirement that as soon as you test positive, they do something called partner tracing. So they want you to go through six months before your last negative test. So mine was about a year before I tested positive.

I had a negative. I'd go six months back from that. And anyone that I had had any sexual contact within that time had to be contacted. You can choose to do it yourself or you can give their contact details to the hospital and they will ring them for you. It's like, you know, in COVID when you used to get the text, you'd be like, you've been in contact with someone. Yeah. They would send that text out. I made the decision to do, my current boyfriend obviously did myself.

He already knew because as soon as I found out, I told him. The boyfriend I'd had before that, I told him personally and I went to go visit him to tell him. and there was one guy at university that I just didn't, I didn't want anyone at uni to know and I was like, well, if I go tell him, he's going to go tell everyone. So I did that one anonymously. Okay. But my boyfriend, the same, he basically went, got tested,

unfortunately, both positive. And then we broke up very shortly after that. Right. Yeah. I don't think a relationship can really, I mean, I was 21. I was going through a lot. And I think mentally I was on a very steep downhill spiral. And I didn't really want people around me.

I kind of wanted to like wallow a little bit and be like, this is awful. So yeah, I've not spoke to him since then. Wow. Do you know who you caught it from? Yeah, I'm pretty positive. Two of them that I've spoken to don't have it, and one does. I've obviously since then done so much activism, public speaking.

It's all over my Instagram. If there was anyone in the woodworks that at some point, I think they'd have come out by now. It's been six years. Okay. So it's pretty conclusive to me. He does deny the fact he says that I gave him it, whatever. I think it's odds and ends. me it doesn't really matter where it came from of course because it's happened now yeah he's not in your

life anymore anyway yeah but you'd gone into that relationship having done a test beforehand and yeah yeah I'm no detective but yeah I think I think what people always say to me is like do I hate him and I'm like I have no bad feelings whatsoever as far as good of you it's not just that the HIV community is small right there's only about 100,000 people in the UK living with HIV and all of us have different battles and traumas to deal with from our own personal journeys and I would never, I think I stand at the front a lot of this community because I'm one of the loudest voices and I would never for a day want him to think he couldn't come and join us. I would never want him to think that he couldn't come stand with all of us and have the same kind of love and

appreciation that I've taken from that community. I wouldn't want him to think that I would take, I would never. Well, that's so nice. Thanks. That is really. That's very, it's very big of you. Yeah. Can we go back to you finding out that it wasn't a false positive and you did in fact have HIV? Yeah. How on earth did you feel? Because I imagine it's something that you didn't know very much about and probably had a lot of misconceptions about. My immediate thought, I thought I was going to die.

And I kind of thought like, how long do I... Because I didn't know it had evolved from the 80s, right? I thought it was still pretty much a death sentence. I'm lucky enough, I have a fantastic relationship with my mum and dad. So I rang them immediately and bless them, they're like hung over in 80s festival in Choose Life T-shirts and not really the vibe at all. And they had to drive three hours to basically come and sit with me for the whole day because I was like, I've got HIV, I need you to come.

And they just talked me through everything. My mum rang Terrence Higgins Trust, which is the UK's leading HIV and sexual health charity for the whole journey up to see me. So by the time she got to me, they'd basically coached her into being like, don't say this, don't ask her this, give her whatever she needs. And these are all the things she probably does need to know, but like give her her own time. So they were like ready and armed to kind of just look after me. Oh, what base.

I know. That's so nice. Because your parents will, I'm assuming, have grown up, well, I mean, they will have done. They will have grown up at a time where, and like you say, like, it is, it is amazing how the stigma of the 1980s and the AIDS crisis has transcended generation. 100%. I wasn't even born in the 80s. I know you were. But, you know, I wasn't born in the 80s.

And still, I've grown up with all of this misconception, preconception, which is really interesting. But obviously there was so much misinformation at the time. There was a lot of fearmongering. There were a lot of people very scared. And it was our parents, really, that were the scared ones. And I suppose it's kind of inevitable that what we've learned in turn has been what they knew, which is, which was that it was really, really scary. So it's kind of amazing for your parents, for having lived through that time

with all the noise and the misconception and everything else and the stigma, that they were able to be so positive and informed. in... Pun intended. Yeah, sorry. But it's amazing that they were able to do that. Is that just to their character? Are they just...

I'm like the youngest of three. And I think when it happened, all they wanted to do was make me better again. So it didn't matter whatever they had to say or do or push through or like convince people otherwise. Getting me to be back to how I used to felt from before was their main priority.

It's funny. So I just said about the joke positive. My dad, they took me to a weather spoon. as soon as they got to me because they were like, we need you somewhere safe. And I am necking Pikes of Guinness and I don't smoke

and I'm having like 20 fags. I'm just like, mum, I'm sorry. Like, it's a rough day. And my dad just starts laughing and he went, oh, you could just stay positive. And I was like,

not the time. Can we give it a few days? Yeah, at least, come on. Bless it. Bless it. Yeah. You left the appointment. You called your parents

and obviously you do have the, you've got all these ideas in your head that it's like a death sentence yeah so my initial appointment i went into back to an sTI clinic to be told that i was HIV positive from that they have to refer you to a HIV clinic and they booked because of how quick HIV can move obviously when you're on medication it's not a dangerous drug you can get to sorry not a dangerous um virus you can get to a point where with drugs you can't pass it on in the early stages there is no telling how transmissible you could be. And I think there's a lot of fear where some people get told they're positive and don't come back. So they try and do the appointments quick to get you in,

sorted on medication and with all the help you need. So on the Monday, I got told I had HIV. By the Tuesday, I was in the HIV clinic. And by Wednesday, I had medication. Wow. Yeah. So it was rapid. Yeah. That's great. Yeah. They had no idea how long you'd had it before it was detected. They can make rough deductions. So when you get diagnosed of HIV, there's two things they test for. viral load, which is basically the level of potency, the virus is in your blood. The higher that is, the more contractable it also is. But it also can suggest slightly if you're in a stage of seroconversion, which is when the virus first takes over in the body, your viral load will spike, and then it will start dropping back down, and then it will slowly rise again. So you can make

guesses based on that. The other thing they test for is your CD4, which is your immune system cells. Now, HIV directly attacks and lives in your immune system cells. So instead of you producing new immune systems, it replicates into HIV instead. So as the HIV develops, your immune system drops as your viral load goes up because it takes over all those cells. So normally, based on where you are in that level, they can make a rough deduction. There's also certain things they ask you in terms of have you had any of these symptoms, conditions. I had a really bad flu in the January. The point I was flawed for like three days, I couldn't get out of bed. I was really sick. Went to the hospital. And do you remember what

like Australian flu went round and it was like this big crisis when I was like this horrible flu going around London my doctor basically told me I had that in hindsight it looks like that is when I serro converted and obviously I didn't know because normally you get quite a bad flu when you sarah convert so and I am really ignorant and I hope you can forgive it but I'm anticipating that a lot of our listeners will be as well given as we say like there's not a lot of sort of rational or yeah conversate I don't know actually

I stand by it there's not a lot of rational conversation about HIV and I think there are obviously some obvious misconceptions and assumptions people would be making if it had been left uncought if you hadn't done the SCDD, what would that have looked like? My CD4

so in a normal person your CD4 count an immune system is between about 1,600, back in the 80s if it dropped below 200 it's what they would call AIDS now AIDS technically doesn't really exist in the UK anymore because the medication is so advanced you can come back from any level of kind of degradation to that immune system but 200 used to be the benchmark that if you drop below that you were in trouble I was at 84 when I got diagnosed so

I was probably three four weeks off being hospitalised and I had no idea oh wow yeah so in this sort of time where AIDS was coming up yeah it would have been diagnosed it would have been an AIDS diagnosed yes it would have been yeah that's interesting so age doesn't exist anymore because? It does. AIDS and HIV are different. So for people listening, HIV is the virus itself. AIDS is an acquired immunodeficiency. So it's basically when HIV has attacked your immune system so much that you can no longer fight off any other infection. So all your opportunistic infections like tonsillitis, thrush, the sarcomas, so the skin cancers people used to have back in the 80s, all of that will start attacking you at once and you have nothing

to fight back with. At some point, you will succumb. So you will never die of HIV. You die. You an AIDS-related illness, and one of those infections will basically can take you down. But because the medication is so advanced and they can give you antibiotics, antiretrovirals, they can get you quite quick treatment. You can come back. Sometimes there's long-term effects if you've dropped that low and you've had other conditions, but normally you can come back. Obviously, we're in the Western world where medication is accessible and possible and obviously affordable thanks to the NHS here. In other countries, and then obviously, less to develop the countries, it's still...

It's still a thing. Yeah, still as it was, right. Interesting statistic, most people don't know. So of the people globally living with HIV, 60% are women. Wow. Yeah, mental. Because if you look at like the UK, I want to say it's like 75% men, 25% women. But when you go to a global picture, the women do really dominate.

Because in a lot of countries, mainly in like Africa, etc., there is no medication. And it's very culturally not acceptable to treat HIV because of, HIV is seen as being gay related and gay is still illegal in a lot of these countries, you cannot access medication. Okay. Yeah, so it's kind of a byproducts of that homophobia that HIV treatment can be really hard to access. But women are being able to access it.

Is that why they... No, so even in some country, I think, like, I want to say it's like... So I have a Ghana or Uganda. I can't remember which one it is, but they basically had to set up a charity and the charity was getting heavily stigmatized by the government because it was a HIV charity and everyone was saying well HIV it's gay men women don't have it even though that's not true they were perpetuating that much hate that you would block people from access to medication wow and am I right in thinking that HIV is passed down if untreated if you had a child so you could

have a child be born HIV if you weren't on medication yes if you're on medication what it's called vertical transmission has been entirely eradicated in the UK yeah so I will chances are I will never unless something goes wrong and I don't take my meds obviously it's all kind of reliant on me doing the correct treatment process but yeah I would never pass it onto a baby even you can breastfeed now wow yeah I think that guide guidelines on that only changed like the last five years wow yeah that's amazing are there any side effects of the medication that you have to take some people do personally the only thing I had I started taking originally basically when I got diagnosed they told me I had to wait to see a doctor and it was going

to take two weeks before I could get medication and I was adamant that I was not waiting two weeks because I was in such a kind of a hole of I don't know what's going on that I was like I need this. I kept calling it a magic pill. I was like if that tablet is going to make me better, I need it now because mentally I can cope if I know I'm taking it. And they just said they couldn't do it because I had to see a geneticist and all my blood had to be checked properly. I think one of the doctors took pity on how devastated I was. I was like crying under a table in a hospital room so it wasn't And they called me the next day and went, look, we're going to put you on tablets. In two weeks, it's likely you'll change.

But at least you've had something now to kind of hold on to and get you through the next two weeks. When I started that medication, my skin blistered. Right. Really back to all over my face. It was like bright red blisters. And it didn't lift for about four months, which was awful because it's like a really obvious side effect. What my doctor explained is it's not the medication.

It's because my immune system was so low. my body then started fighting everything. So any bacteria that went near any of like my skin on my face, my body was just trying to fight it off. But yeah, that's the only thing I had. Like in the run-up to getting the diagnosis, had you been poorly? No.

Because obviously your immune system was so low. I was going out like four nights a week. And was that just luck then that you didn't get poor? I mean, because... Yeah, I think from what the doctor said to me, I think if it had gone any longer, I'd have started noticing things. I had lost a considerable amount of weight. So I'm, well, I'm six foot and I think I was about 58 kilos when I got diagnosed,

which is really quite skinny for someone's six foot tall. But I hadn't noticed it because I'd been like, I mean, I worked at ASOS. I was partying. I was having fun. Like, I just kind of thought I wasn't eating properly is what I put it down to is I was doing a lot of late nights without having dinner. And I just kind of chalked up to that without thinking there was a problem. Yeah.

Also, I imagine that that problem, wasn't like the obvious place that you jumped to. Yeah, yeah, yeah. So obviously, like, when you start the medication, you've got four months of reacting to the pills that you were taking, which that's unfortunate because otherwise, because it's invisible, right? Yeah, yeah.

You could have not said anything. What led you to wanting to, I mean, speak about it publicly is huge, but I imagine before there there's steps where you've got to tell your friends and the people that you work with. Yeah, so the first three years, so I've had HIV for six years, The first three, I was very quiet about it to an extent. So I didn't tell anyone other than my mom, my dad, and my best friend for about a month. Then I went to university, obviously, it was my final year.

We'd gone to a party and one of my friends was like, look, let's just get out, let's have fun. And no one at university knew. One of the boys has then tried to take me to his room. I just panicked. Randomly had actually found out that day that I was undetectable. So it's supposed to take six months and they say, give the guideline is six months. but I had tested undetectable that day. So I had been called that day to be like,

just to let you know your first undetectable's come in. You're not supposed to have unprotected sex, etc, for six months after that. But I had been told I was undetectable. But I still felt filthy. Is the only way I can just went. Like I felt so dirty that the fact he was trying to take me to his room

just made me panic. So I wanted to go, I just wanted to go home. I ended up finding my friend Caitlin and she'd left the preys early. So I was a bit like, well, where are you? And I just ran in and like, screamed at her. I was like, I've got HIV. And she was like, are you all right? And I was

like, no. And then after that, I think it continued that spiral of like going out and shouting at people when I was drunk or in the girl's toilets. Do I mean, sharing a cubicle being like, by the way, I've got this. And people are looking at me like, what is wrong with you? I don't know. So I didn't tell people correctly. I think because I was like building up so much that it wasn't until I'd had enough to drink that I wanted to talk about it. And then I probably didn't say the right things because I wasn't explaining that like, I can take this tablet.

I can never pass it on. I was just crying being like, I need help. Yeah. And obviously your friends are going to panic then because it's like I've got it to be... So many of them cried. It was awful.

Yeah, because they probably felt like you did on that first day thinking... Yeah, yeah, yeah. It wasn't a death sentence. Yeah. And I did kind of say to them all, I think by the time I'd got through most of uni, I'd told probably like 10, 12 people.

And I kind of said to them all, please don't tell anyone. like genuinely just don't tell anyone outside this group. I don't mind if you want to talk amongst the group, but don't tell anyone else. What had actually transpired is the boy that I tried to take me to his room on the first party, I had told in like my panic of like,

I can't come to the room with you. He told everyone at university immediately and I had no idea. So I'd basically gone through this whole year thinking that I was confiding in people and telling them and everyone already knew. Oh. Yeah.

So then it wasn't until we're in like, the pub one Sunday afternoon and one of the rugby boys just kept saying like are you okay and I was like yeah I'm fine and he kept asking me he kept being like we know you going through a lot like do you need to talk about anything and I was just like it just clicked to my head I went there's no way you would ask me that unless you knew so I went on a rampage we literally grab on everyone like do you know do you know and they all said yes and I was like this is actually really mean that you've all been discussing this and no none of you have bothered to think I'll let Ellie know that we know and like maybe she wants to talk to us and I felt like

like I couldn't walk anywhere without, like, thinking people were talking about me. Because it's probably hundreds of people that had been told without my consent or knowledge. And they'd all not kept it a secret because they knew that I didn't know that everyone knew. And they weren't saying the good stuff. They're being like, Ellie's got an STI, Ellie's got AIDS. So I mean, it was very much classic uni bullying in some sense. So I did make the decision after that. That's kind of what started, I think, the journey of me taking my life back, I guess.

So I went out the day after I found that everyone knew and I got a positive symbol on my middle finger to be a bit of like an F off to everyone like I want to take this back that I have nothing to be ashamed of I also didn't want the pity like people were looking at me like I should be sad and by that point I'd lived with it for eight months and I was all right like

I'd realise that it didn't affect me at all and I was ready to just have fun and like carry my life on so I wanted to do it as a bit of a statement to everyone to be like leave me alone like I am great I'm good I am owning it Like, if you all want to know, I'll tell everyone too, I don't mind. And it was just kind of a reclamation at that point.

And then I said for the next two years after that, I went into work. And I didn't tell many people. I probably saw like one or two colleagues, if that. And it felt like this. All I can explain it was, we were in lockdown in COVID. And I'd moved back to my mum and dads because I'd been asked to shield because HIV technically class as being like immunosuppressed. So although my immune system was fine, the doctor had asked me to shield.

and I was like, I'll just go live with mum and dad. And my dad kept saying to me and he always had, he was like, I feel like you just need to talk about it more. He was like, I think you'll feel a lot better. Like, it's been almost two years now. I think you just need to talk about it. And I sat on that for a while. And then it got 2021 World AIDS Day, which is the first December.

And I just filmed a video to put on YouTube. Well, originally it was like for my personal Facebook because there's so many people that didn't know. And like, I take my tablet at lunchtime and people like, what's that for? and I'm like, oh, I've got an immune condition. And I just thought like, I was hard to cover up the lies because I couldn't remember what I told people or what excuses I made for doctor's appointment.

So it was getting a bit like hard to manage. So I just put it on my personal Facebook for everyone to just be like, well, it's this, like, this is what it means, these are all the facts about HIV. And the response was that great. I moved it to YouTube, which has now got like, I think it's got like 180,000 views, which is insane. And then from that, I just really started on quite aggressive activism

in some points. because I just felt like I wanted to talk about it and the more responses I had from women being like I have HIV to it and I'm scared I was like I don't want anyone to ever have to feel like that and if one of us needs to stand up and say it like I'm ready to go and do it you'll be having such an incredible impact on anybody who's received a diagnosis

since you've made that video accessible because I imagine when you did there wasn't a lot of content from young women I don't think there was any exactly I still don't think there's that much Now, my mom says this all the time. She was like, there's not a lot of views out there. And I was like, when you say it in a way of like, there's not a lot of activists my age doing it.

Yeah. There is a lot of women my age that are going through the same thing. And I know some of them personally that came out and was like, I would never would have normally told you this, but like I have it too. And I'm like, oh my God, let's be friends. Yeah. It's so taboo and like people don't want to talk about it and they are really, really scared. And I was too, like the first time I did so funny actually.

So the first public talk I ever did was on Channel 4 Steps Back Lunch But I've never spoken to anyone about it before That is such a really deepens From like drunkenly shouting at your friends I know And then as literally as you're on set about to go live Everyone kept being like, you're really brave

And I went, stop saying that Yeah, it's going to take me over the edge But yes, the first time everyone went public And that was again, World Age Day 2022 And then from that point, weirdly I'd also never met anyone else with HIV then. Really?

Which is only two years ago, but yeah, I'd never met anyone with HIV. So after that, a lot of people were reaching out to me and a lot of charities would be like, come do more with us, like we want you to work with us. And that's when I was like, I also want to meet other people living with HIV, which is weird because I'd say like 80% of my friends now are HIV positive, which is really weird. Really? It seems a shame that they don't offer, that there isn't something that exists for when you're diagnosed that there isn't a support group that you're referred to?

There is, and I was offered one. And whether this is good or bad advice, I don't know. The recommendation from my doctor was that I shouldn't have gone to it because I had a big, why me complex of why has this happened to me? What have I done to deserve this? That was a lot of like my trauma at the time. And it was a room full of gay men. Right.

And he was like, I don't think it's going to fix your current mental health struggles if I put you there, which in hindsight is bad. advice because it's the same lived experience and the conversations you can have. Also the empathy I get. So one of my best friends, he's also an activist, when I talked to him about my experience as a straight woman and he talks as a gay man, he's like, it's so different. And he was like, what you have to go through is so much worse. And you get a lot more like understanding because although it's different and obviously

the gay community is so well educated, it's similar in the sense of like, you know what that stigma feels like and you know the fear. it's interesting what your friend was saying about how your gay friend was saying about how your experience as a year and I was going to ask about that because I do imagine that within the gay community it's an easier conversation in in and of the fact that it is a conversation

you know it is a lot of them are also on prep which is so much easier so if you think when you're as a HIV positive person going into the conversation of I've got HIV and someone goes I'm on prep and you're like well you already know everything because prep is the drug you take to prevent getting HIV and a lot of gay men just take it anyway you can literally just take it every day as preventative measure

so it's so much easy because they know everything about HIV you don't have to sit and tell them that you're undetectable he's like it's fine yeah whereas you don't get that in the straight community no and I want and it's been six years and I imagine in that time you've wanted to date and to have sex and to like reignite that part of your life how has that been me and my best friends to talk about this all this time

dating in your 20s it's already hell without putting this on top of it it got harder so the first three years it was fairly easy because I could pick and choose when I told someone

so I could go on kind of like two three dates establish a bit of a relationship I normally won't go any further than that without telling someone on the off chance they ghost me and then I'd be upset so I try and tell them fairly early on

but I'd control it to a point where they knew who Ellie was and they knew me at least a little bit before I dropped the bombshell on them. But recently, obviously, I've done so much activism that you can't hide from it. Because people are like,

what's your Instagram? And I'm like, I can't give you my Instagram. Because it's plastered all over it. So I now have to tell people so early on that it's almost too early. Yeah. Because they're like, why are you not giving me your Instagram? And I'm like, it's a really long story.

I do charity work. And people are like, oh, that's great. Can I see it? I'm like, no. So it's really changed because although I'm better with dealing with it now and I handle that conversation so much better. I used to cry when I told men it was awful. Or I'd like, I'd like stand behind the shower curtain because they didn't want to look

them in the eye. Oh, that's so embarrassing. Why did you have a shower curtain with you? If they were at mine and I was like, let's have a chat. I'd like be, they'd sit on the toilet and I'd be in the shower. Oh, that's a nice space to have. It's just so specific. Come to the bathroom with me.

Unless it got really bad. than maybe. How did they, those first few guys, take it? It's a mixed bag. Some people couldn't care less and they're very understanding and straight away were like, oh, I know someone with it, it's absolutely fine. I know you can't pass it on. That's lovely.

I'd say that's 10% of, yeah. Yeah, I was hoping for a bigger number than that. I'd say the other 90, it's a mix of, sometimes I get ghosted straight away, which in the early days offended me. Well, upset me. I'd say now it offends me more because I'm so well practice as an activist. I know I could have said so much great stuff to them. And I've, like, missed the opportunity to go on my little soapbox.

Yeah. And then the worst ones, I've been called some very horrific things on dates. Have you? Yeah. What face to face? Yeah. After telling them. After telling them.

Yeah. I've had people refuse to kiss me after I've told them, which is weird because you can't even catch it from kissing. So that's so silly. I've had one of the guys who I dated for about four or five months made me give him a HIV test after every time we had sex which I don't think what he realises because obviously I got diagnosed from a home SDI test having those tests in my house are quite triggering

and it brings back a lot of very dark memories so him whipping one out every now and then was a bit like a bit heavy can't he test himself well yeah I mean it doesn't even get tested it doesn't need to because I can't pass it on Yeah. Can you explain that? Because I think there's probably a lot of misconception around that as well about transmission and how it works when you are taking the medication and you are undetectable. Your viral load is the level of potency of virus in your blood. The higher is the more transmissible you are and the more likely you are to either pass it onto someone or like through blood, etc. If you drop that, in the EU, you have to drop it below 200. In the UK, they test to 50 just because the labs are so much better here. if you can drop below that level of viral load, you are classed as being undetectable.

The only way to get that drop is to be on medication, which suppresses the virus in your blood. So normally it's a triple combination of medication that stop the virus from replicating and therefore will bring your viral load down. As soon as you hit that, you are, you cannot pass the virus on. Technically, I think the higher, well, the lowest it's ever, the highest or lowest, how do you say that? The highest it's ever passed, it was like 700. Got you. I don't know if you'd say it's the highest or the lowest,

but you go out of the lowest. Like the lowest, yeah. So it's 700. And there was so many other factors in that. I think there was like someone was very sick, had another STI, yada, yada, yada. Typically, if you're below 5,600, you're undetectable. Medically, they'll test you to 50 in the UK.

Okay. Yeah. And how often do you get tested? Once every six months. So this is another fun fact that I think people don't know. I think people think HIV is a lot. life shortening condition. Statistically, I will outlive HIV-negative people

because I get a full blood test done every six months. So my liver and my kidneys, I get a full M-O-T. And therefore, the longest I can be sick is six months without knowing. So statistically, I can live a longer life now. Well, that's nice. It sounds like an advert for HIV, so I always have to disclaim lots of people. I can live up to six months longer than HIV-negative people. It feels nicer.

It feels like you deserve. The HIV community deserves a win. Obviously, that's amazing that you know that you've got it under control. You can't pass it on. But there are people out there and there will be women out there who just don't imagine that it's something that could get them because I think it's, I think that, don't quote me on this number. I want to say it's between 4,000 and 5,000 people left in the UK undiagnosed.

So living with HIV and have not yet been diagnosed. The goal in the UK is to get by 2030, we want to be the first country to eradicate transmissions, which basically means that no one will ever be diagnosed with HIV again in the UK. The only way we get there is by getting everyone on medication and everyone tested. So it's a huge thing to everyone to be like, if you haven't had an SRAIS recently, go and get HIV test, 100% go and get one. But what they were also doing is rolling out opt-out testing in A&Es.

So it used to be, if you had a blood tested A&E, you would not be tested for HIV unless you specifically asked. Now there's 40 A&E's in the UK that will test you automatically, which means you find people that were never going to SCI clinics, would never imagine they had it. And that's the group of people we need to get to.

Because most young people, although they're not getting regularly tested that well, will eventually at some point have a HIV test. There are communities, and it's mainly more like the African Caribbean communities, that it's just quite frowned upon. And they don't really do it, and it's just not what they do in that,

community. So the tests that they do are the ones that you self-diagnose at home. So the one that I did, obviously, you prick your finger, it goes off in the post and if someone rings you to tell you the result. The new rapid HIV test is like a COVID test where you do it and within 15 minutes will tell you if you're positive or not. Bloody hell at home. Yeah, but so I was the same. I was like, God, that sounds horrific. I wouldn't want that. And one of my friends explained it to me is they were like, it's because they don't want it in the kind of the medical records until they're ready. So they would like to find out

on the comfort of their own home and be able to handle it privately, which is why those tests have now men that we can access a lot more communities because they don't feel like they're being boxed in. Of course, and actually imagining that there is still stigma attached particularly for men

and the assumption will be perhaps that if they end up with HIV, it's because they must have had sex with the man, which could in certain cultures be something that would see them be ostracized. So I can see how that, can help but it doesn't also feel very frightening that they might be that there were still be all these vulnerable people finding out on their own I think if I found out like that I wouldn't

have gone to the hospital straight away no it would have took me a while it's the shock and this is what I say to everyone like you know like in chicken little when he says the sky is falling that's what getting diagnosed with HIV felt like because nothing happened to anyone but me and I felt like the sky had fallen but no one else could see it so everyone else was carrying on and life was normal, and people like, go back to work. And I'm just there like, I feel like my life is over. And no one else has noticed it. Wow.

How quickly, after receiving your diagnosis, did you find other women who were HIV positive? Did you have to struggle to find that? They found me, I would say. So I technically did me one older woman. So I tried to do a charity thing called Positive Voices. which is basically people living with HIV that go into schools, doctors, companies and talk about their lived experience. I tried to do that in 2020. And I went to the training session.

This is, I feel so bad for saying this. But there was basically loads of slightly older gay men in the session. And they were talking about how horrible it was for them. And I was like, you not need to grow up. Like, I was like, I've had a little worse than this. And we all need to chill out and cheer up a bit. Because this is sad. This is really sad. So I didn't go back because I was like, I can't deal with that. I was like, I've put a lot of, I put a positive spin on a lot of what I've done and I've tried to be quite upbeat about everything that's happened. And to have someone be like, it's the worst thing that ever happened to me. I was like, I can't do this. So I did the organiser of that was a woman living with HIV. So I had come in contact.

I just hadn't really had a lengthy conversation. So it wasn't until I started public speaking and kind of getting myself out there and doing YouTube videos that they all found me, which has been really nice. So I did an event in Manchester, it was just supposed to be a talk, but it was three women. I think we're all about the same age around like 27, 28, all living with HIV. And it was just wild because you're just looking around being like, all our stories are so different. Because you'd expect it to be similar, but they're not. They're so entirely different. Yeah. Because it's, as with all things, with stigma, you do end up sort of like boxed off or push to the side and like group together. It's like, well, everybody over there's got AIDS, so we're just going to leave them to do it. And

that was kind of but that was how like the hospital's like that's how everything like they were locked in rooms exactly and it was like people were just pushed away and left to deal with it as a community and really ostracized for that it makes total sense that it's the like width and breadth of the nation that's affected so of course you've all got different experiences and of course it's been different but it's we we never we've got it's so bad the like you've literally got like the sort of live aid like TV ads that you've that were played throughout school, you know, and I remember that was all our fundraising at school,

was like that was the awareness. And then we had everything about the AIDS epidemic of, like, the gay community. And that's all our education, and that's so bad. Because I had no idea until researching you quite how many women in the UK had it. Yeah. And I think people still, the education is still so poor. And for me, I think telling my female friends has been fairly easy

because I think women are probably a lot more trusting, right? When I explain to my friends that there's this tablet, I can't pass it on, I'm going to be okay, they're very trusting in that. When I tell either my male friends or people I've dated or so I've just recently gone into a relationship and when he told his friends, their reaction was horrific. And they were saying things like, and it's fair, it's just lack of education. They weren't being nasty. They just don't know.

But I don't think they understand that the things they were saying would be nasty to me. What sort of thing were they saying? So it was stuff like, well, how do you know she takes a medication? And I was like, well, that's an easy one. I'd be dead. Not to put it bluntly, but I've had it for six years. It'd be pretty rough by now if I wasn't.

So that's factually I can prove that one for you. And they were like, well, how do you know she's not lying about taking a medication just to get laid? And I was like, well, if I was doing that, would I not just lie about the fact I've got HIV? Why would I tell you in the first place? Exactly. Like it doesn't make any, none of these horrible comments made any sense. They also, these men are not putting any level of these questions. We rely on women to take birth control.

pills with consistency to a tea and none of, I don't imagine any of our husband's friends have ever gone up for me going, are you sure she's taking the pills? Well, I mean, obviously I'm not, but yeah, like, it's so insulting. It's so ignorant. Yeah, well, because I said the worst thing is that he felt the need to repeat them to me. I was like, I don't need to know your mates have said that. Yeah. I was like, you can settle them down privately. But I think he again gets it a lot where people will be like, oh, you're such a good person for dating someone with HIV. And I was like, I don't have anything wrong with me. If I was gluten intolerant, there's more for him to deal with. Because he can't have poster anymore. All he has to do

is hang out with me. Like, there is no change. That's such a good point. It's a picture of a change side. So how long have you been undetectable for now? So technically, this is a funny one for me, six years. So I've had HIV six years. I became undetectable about a month after I was diagnosed. I have what I think is called low-level virilemia. So for the last two years, years for some reason I keep going below 50 and then one day the doctor will be like oh you're at 198 and I'm like that's not good and then they'll be like what do you think it's cool like have you taking your tablets and I'm like yeah I take them every day and it's just slowly for the last two years been bobbing around which to start with was really scary it felt like being diagnosed all

over again because I was like the tablets don't work what are we going to do now I've settled down to the thought of like even at 198 I can't pass it on and I've had to be very like I've had to like be an activist to myself and be like you are literally fine you are completely safe nothing has changed if you lived in france you wouldn't even know it was that high yeah so because i've never gone above 200 and it is fairly normal it has been seen before so there are options to swap medications but there's just not really any point when there is no risk still yeah very big question to end on and probably quite complicated one but do you feel like you are at peace with your diagnosis yes and no i did a documentary with the BBC this year and one of the questions they asked me is like what would you say god

I cried as well so I hope I don't do that again now they were like what would you say to 21 year old Ellie and I was like I have overcome some of the hardest things I think that anyone could have that have to go through and I've done it in my opinion with such grace and I'm so proud of myself for being able to achieve that and for everyone around me for helping me do it there are definitely still things now especially being in a relationship that I'm learning about my relationship with HIV that I didn't realize was a problem. So there's still certain stigmas or certain way people talk about it that really trigger me that I had kind of brushed under and I thought I was okay. So I'd say 90% of the time, HIV is the best thing that ever happened to me. I can't imagine

it's like an old friend now because I've really got to like understand it as a virus and it's given me so much in life in terms of I'm so much more empathetic than I ever was before. I'm so much more confident than ever was before. Like it's given me so much. However, it did take part of my life. And for three years, it was really dark. And it's not until you have kind of when someone says something and it reminds me and I'm like, oh, actually, that was really horrible. That I think I'm still processing a lot of that grief almost. Because I kind of, I lost a life is what I say to people. Like, I had a boyfriend who I loved. I had a job that I loved. My whole life was planned out. I was 21, the world was at my feet and it was ready to go. And then in the blink of a night,

it was all gone. And I said a lot of what I deal with now is still like a grief of something that I thought I was going to have and I never got to have. And what I'm now doing is like building something better for myself. So I don't have to feel that pain. You're amazing. Amazing. Amazing. Honestly, I'm just like, I can't, I couldn't have imagined that you would say in an interview that it's like, it's the best thing that happened to you. But it's so important for people to hear that that something like this can be not just fine but like great great yeah you can just have a great life we always say this you don't have to live with hiv you can thrive with it like you can you do this is not something that has to be a burden in the slightest yeah you will be doing

so much more than you realize to change the way people think about it and we're so proud that we got to have this conversation with you so thank you for coming on thank you thank you should i delete that of the ACath creator network.