Changes: Sasha Goodman
The audio version of this episode is available here.
Annie [00:00:05] Hello. My name is Annie Macmanus. Welcome to Changes and welcome to the week that brings the final month of the year. Christmas is nearly here. We are going to be starting to look back at the year 2022 and all the changes it brought us and we'll be doing that in a really special and very fun episode in a couple of weeks time. But this Thursday, the 1st of December is World AIDS Day. This year, it's 40 years since the first case of HIV in the UK, and the most recent estimate in 2019 suggested there were 106,890 people still living with HIV in the UK today. But how does a diagnosis of HIV change your life?
Sasha [00:00:53] I was quite a free spirit before that, it didn't matter what life threw at me I was kind of just- confidently went through it and dealt with it. I was actually in a relationship at the time. I hadn't been with him that long. So then it was what was I going to tell him? Was he now going to run off? Was he going to stay with me? Is he gonna understand, because I don't understand. No one spoke this through with me. I've just had a diagnosis I know nothing about. And will I kill him as well if he got it, you know? And there was a lot going through my head.
Annie [00:01:26] Sasha is my guest on this week's episode. She was born with HIV, but she didn't find out she was HIV positive until she was 16 by accident when she went to hospital for an injury. She is part of the first cohort of babies to survive with HIV and has struggled with treatments for most of her life. After she found out about her diagnosis, she faced a lot of stigma. Now, in her thirties, she has three children and lives a happy and healthy life. Sasha's mom lived with HIV but was mostly unmedicated. After her mom sadly died, Sasha went on a course and her whole outlook changed. Now Sasha educates others about the realities of living with HIV today, the misconceptions and stigmas, how it affects people and how to live life. Before hearing her unbelievable story I started by asking Sasha if she believed there was still stigma around HIV.
Sasha [00:02:27] Yeah. I think stigma is going to go on for a long time because we're still, still not getting to everybody. I think it's the same with any condition really. Unless it's affected you or affected someone you know or you've learnt about it in like say, the medical sector, you're not really going to have the change of information as easily as someone like myself or my family members or my friends. And there's still not a huge amount of coverage on HIV compared to other illnesses. We are getting more coverage recently, especially since It's a Sin on Channel Four.
Annie [00:03:02] Why do we think that there hasn't been as much awareness or as much knowledge being put out there for HIV as opposed to other conditions?
Sasha [00:03:10] I think the the issue is, in the the UK, obviously we are very fortunate to have advanced treatments and we've had a lot of support in the past growing with HIV from when it came to now. Say in the last 5 to 7 years, HIV funding has kind of dropped dramatically to support people who have HIV because people are living well with it now. And it's harder to pass on when we are treated and undetectable that they're kind of like well, they're okay now. But are we ok. Because being okay on medication is one thing and being mentally stable with our conditions and in ourselves is a whole different circle. So the government have retracted a lot of funding and basically it's kind of getting pushed to the back. People are getting co-morbidities with HIV. People have other health conditions before they had HIV. And children like myself that were born with HIV are growing old with HIV. So we don't know what our bodies were like before we had HIV. We've always had HIV, so we don't know if we're going to be pre-menopausal earlier. There is no science because we are the first cohort so- or the cohort before us that was born before me because I'm late eighties, a lot of them died. So we are just basically going day by day, week by week, month by month.
Annie [00:04:37] You mentioned that- so you were born with HIV. And, you know, you talk about being this first generation of people who were born with it over here. Can you give us a bit of context around you coming into the world as a baby and when people around you realised that you had HIV?
Sasha [00:04:55] Yeah. So my mum was 21 when she had me and she had me in 1988, which this is when HIV testing in pregnant women wasn't around. So it wouldn't have been something that she would have been offered. It didn't come about until about 1992, 1993. I was born a normal, healthy birth. I don't know if I was breastfed or not because my mum unfortunately has died. We'll get to that later. And as far as I'm aware, I was actually okay until I was about four or five.
Annie [00:05:26] Right.
Sasha [00:05:27] In between me being born and me getting to the age, my mum had a bit of a life change herself. She didn't know she had HIV still, but she had gone on a different path. So I ended up going to my grandparents. And my grandparents took me on and I got chickenpox and I reacted extremely badly to them, to the point that I was going to die. So that's when all the tests were done. No one knew what was going on. The last resort was- back then it was called an AIDS test. And I had the HIV test, I believe, in 1993, and I came back positive with full blown AIDS and a six week prognosis.
Annie [00:06:09] So, the difference between HIV and AIDS.
Sasha [00:06:12] There is quite- yeah, there's a big difference between them. So AIDS is an acute immune deficiency syndrome. Which is a collection of illnesses that you can acquire because your immune system has broken down so much by the HIV virus, which is the human immune virus.
Annie [00:06:28] Yeah. And you don't get AIDS without having HIV, right?
Sasha [00:06:31] No, and you don't get- you don't just automatically have AIDS because you've got HIV.
Annie [00:06:36] Got it.
Sasha [00:06:36] HIV attacks the white cells of the immune system. And when it gets to a low enough level that there's nothing to fight, you will get opportunistic infections. Could be pneumonias, it could be anything. Chickenpox, anything. Then when you are at that stage that you're near death, that's when it's then classed as AIDS because it's acute immune deficiency syndrome.
Annie [00:07:00] Got you.
Sasha [00:07:01] So, your immune system is is wrecked.
Annie [00:07:03] Yeah.
Sasha [00:07:03] By the virus.
Annie [00:07:05] And we should say now that AIDS is very rarely used by UK doctors, it's just kind of advanced HIV. You know, HIV is treatable to the point where you don't get AIDS here.
Sasha [00:07:15] Yeah, we want to come away from the word AIDS because AIDS is still perceived as what the condition is when it's not. HIV is the condition. And AIDS is not a term used in the UK, hardly. The only time I've ever seen it is on charity names.
Annie [00:07:32] So, but you said as a kid you had full blown AIDS?
Sasha [00:07:35] Yes. Yeah, yeah.
Annie [00:07:37] So the HIV had progressed that badly, it hadn't been treated yet.
Sasha [00:07:41] Yeah, it hadn't been treated because nobody had ever had to test me.
Annie [00:07:44] Right.
Sasha [00:07:44] Because my mum didn't know she had it either. It was only when I got diagnosed that my mum had to come and be tested too. And she was then diagnosed.
Annie [00:07:53] So what happened to you then? As a four or five year old little girl in terms of how did your life change upon other people realising?
Sasha [00:08:02] My grandparents got told to take me away because I only had six weeks and to enjoy life with me.
Annie [00:08:07] Oh my God.
Sasha [00:08:08] So they took me to Austria to visit family over there. And then when we came back, we had been transferred to St Mary's in Paddington from Whittington. And it was when I arrived at St Mary's Paddington, Dr. Gareth Tudor Williams, now professor, he had just come to that clinic from America working with AIDS himself and HIV, and was seeing this massive influx of children born with HIV that were flying in through the doors. And he felt that he had to do something. So he travelled back to America and back to here to try and get treatment for children. Because back in 1993 to 1997, there was not treatment for children.
Annie [00:08:53] So it was just assumed that if they had it that bad, it was like the doctor said, they weren't going to be able to live.
Sasha [00:08:59] Well, they didn't know what to give us because all the treatment that was being tested and trialled was AZT, which was the toxic drugs, were the ones the adults were taking and they weren't surviving on them either. It was like a rapid turnaround of just trial and error, really. And I was trialled on these drugs. You know, the one thing that they all say when they do their speeches is that they didn't know what was right then. And I get that. And actually, for that, there was loads of consequences.
Annie [00:09:28] And what were they?
Sasha [00:09:29] And the consequences are some children died. Some of us had severe issues in our childhood, like I lost the use of my legs and I couldn't eat and drink and things like that. And back then, there wasn't the policies where they couldn't hold you down to put them down your throat. So I had those issues going on. I still remember being forced to take these evil, vile, liquid medications. And so they caused a lot of traumas, but at the same time, they were just trying to keep us alive.
Annie [00:10:01] How old were you when all of this was happening? Like how much of your childhood was spent hospitalised?
Sasha [00:10:07] I think the first time I fully stayed out of hospital was when I was 12.
Annie [00:10:11] Wow. So from the age of four, five up to now.
Sasha [00:10:14] Yeah, I spent most of my childhood in hospital, even after that I still end up back in hospital. I could never understand what was going on. I didn't know I was HIV positive till I was older and no one told me. So for me, it was just my first home.
Annie [00:10:26] What did you believe?
Sasha [00:10:28] What they told me.
Annie [00:10:29] Which was.
Sasha [00:10:30] I had a blood disorder.
[00:10:31] *Short musical interlude*
Annie [00:10:41] Well, let's talk about this moment then when you were 15 when everything changed.
Sasha [00:10:45] My mum had come back into my life properly when I was about 12. She had moved to the area so I was living with her and my grandad. By this point, my nan had died that I grew up with, so it was just me and my grandad and my mum and I was now living with my mum. I was helping my stepdad and I cut myself quite badly. So I went in for that and I sat in the room after triage and the doctor just walked in with a clipboard and just went. Miss Goodman, I understand you're HIV positive. And I just remember that time just stood still. Time literally like- I can remember exactly that moment and freeze it because it was just like, well they taught me about a virus when I was a kid, but I didn't know that's what they were teaching me. They taught me about immune systems, but I didn't know that's what they were teaching me. I've been sick all my life. Oh my God, I'm HIV positive, I'm going to die. Like, that was my first initial thought.
Annie [00:11:40] So what did you know about HIV positive? Like, what were your preconceptions?
Sasha [00:11:45] My preconceptions were, Princess Diana shook hands of people with AIDS and HIV and she was okay. But people died of it. My only conceptions was, AIDS was a killer. And if you've got HIV, AIDS is HIV back then. Now there's a big difference but back when I was that age, we knew it as AIDS more than we knew as HIV. And so I looked at my stepdad and my stepdad was in utter shock cause he didn't know either, that I had it. Everybody around me knew, except for me and my stepdad.
Annie [00:12:21] Wow.
Sasha [00:12:22] So it was just us that didn't know that I had HIV.
Annie [00:12:26] So how did that then change your life from that moment on?
Sasha [00:12:32] It's where all the problems started. It's where all the issues- I was quite free spirit before that. It didn't matter what life threw at me. I was kind of just confidently went through it and dealt with it. I was actually in a relationship at the time, hadn't been with him that long but I also wasn't 16 and I'm a bit of a- I like to follow rules, so I hadn't actually slept with him. So then it was what was I going to tell him? Was he now going to run off? Was he going to stay with me? Is he going to understand because I don't understand. No one spoke this through with me. I've just had a diagnosis I know nothing about. And will I kill him as well if he got it, you know? There was a lot going through my head, but the first thing that was going through my head was dealing with my mum when I got home. That was the biggest issue.
Annie [00:13:19] And when you say dealing with her, how do you mean?
Sasha [00:13:22] Oh, I lost- I lost it with her. I went home. I was so angry. I was so upset. I was hurt. I literally felt every emotion but happiness. And just lashed it at her. And I said lots of horrible things to her. I tried to get it out of her. She wouldn't talk about it. She wouldn't have a conversation. She was upset herself. You could see it- like now I look back, you could see it in her eyes that she was not able to process that she's now having to deal with that I found out that she's got it as well as I've got it. That my stepdad now has found out that I've got it. And all these lies and all these cover ups have now been exploded and I'm stood there screaming. It's a lot to take in. And if you overlook my mum's self stigma that she was in denial that she had it, she never medicated.
Annie [00:14:13] Wow.
Sasha [00:14:13] That's why she's not here today. So this is the other thing is the stigma that came prior to me was already set in her.
Annie [00:14:22] Yeah.
Sasha [00:14:23] Because the early eighties it was huge. And my mum was born in the late sixties, so my mum, the shame she felt overtook her health.
Annie [00:14:34] Your stepdad didn't know that you had it, but did he know that your mum had it?
Sasha [00:14:38] He didn't know my mum had it, no. He's a very good guy and whatever his feelings were, he loved my mum and he loved me. So he, he never ever once, you know, made a thing about it. It was all about helping me.
Annie [00:14:53] How then did you need support in the next few years? I mean, I'm just thinking about the time that you found this out right in the middle of your teens, starting to get back into normal life post being in hospital for all of your childhood, but also going through a lot of change hormonally, physically, like.
Sasha [00:15:09] And I was only just fitting in at school as well. Because when you grow up out of society, in the hospital, and then you go into the normal society of school and life in general things, people have been doing things that you've never done in your life and they've been doing them all their lives. And I wasn't integrated into society. I was literally thrown. And I struggled, I really struggled. I was bullied. I never felt I ever fitted in anywhere.
Annie [00:15:38] Right, so those teenage years in school then were tough?
Sasha [00:15:43] They were tough. They were tough before that moment. They were even tougher after that moment because I made a silly mistake of going to school and telling my best friend at school.
Annie [00:15:53] What you found out.
Sasha [00:15:54] Yeah, because I like to share. I'm quite an open person. I can't hold things like that in, I need somebody. And I told her and she thought I was attention seeking. So she told the whole school.
Annie [00:16:05] That you had HIV?
Sasha [00:16:06] Yeah. In 2005. Yeah.
Annie [00:16:10] What happened next?
Sasha [00:16:11] I had to leave school.
Annie [00:16:13] Because people were giving you gyp?
Sasha [00:16:15] Everybody was given me gyp. I couldn't walk down the street. I couldn't be in public. I couldn't be in class, down the corridors. It didn't matter where I was, I was the AIDS girl. I was being called a slag, I was being absolutely throttled with abuse that I couldn't tolerate and cope with it.
Annie [00:16:33] Of course.
Sasha [00:16:34] School brought me and my girl mates together. I had a group of us. There was eight of us. My mum nicknamed us The Great Eight and she was one of them and we were The Great Eight and we all got pulled together in a room. The teacher said, look, Sasha is HIV positive. She actually needs a friend right now. And the girls still didn't believe it at the time. Then, I don't know who spoke to them, but someone spoke to them and said this. We can't control this. There's nothing we can now do. The school already knew I had it pre me knowing it. So that was it then, it was out of control. You know, there was no 'oooh, you know, we'll get an email out to all the parents' and stuff because you couldn't do that because of data protection and stuff. So, it was a minefield waiting to go off.
Annie [00:17:17] How old were you when you left?
Sasha [00:17:19] So I left school at 15. I had no support in school with my education. None at all.
Annie [00:17:23] What happened next then with regards to you going out into the world, having left school, did you try and get any more education or did you-?
Sasha [00:17:34] Erm, not at first. I think it was quite a big blow at first. It was a lot. There was a lot going on. I also needed to tell my boyfriend as well. And he stuck around and-
Annie [00:17:43] Did he?
Sasha [00:17:43] For a bit, yeah. Well, I actually split up with him in the end and we're still very good friends now. He's married now.
Annie [00:17:51] I mean no shade on him, but I'm glad it was you that had the chance to have the agency to do that, if you know what I mean. As opposed to it ending because of your diagnosis.
Sasha [00:18:00] Yeah. No, he was absolutely fine with me. I think he was just as confused about it as I was. But like I said, I actually only saw him a couple of months ago and he you know- we are very good friends and he will always, always be that person that was there at the beginning. And, you know, we've got that connection there. And his wife, she's lovely and I obviously had that conversation with her too. Educated her.
Annie [00:18:25] I suppose you've had to inadvertently take on this role of educating people around you on the realities of what it is to have HIV. Can you remember a point when that started in your life, when you were like, actually started learning and being like, well, I need to basically live in this world and if people don't know I'm going to have to start telling them.
Sasha [00:18:46] Yeah, I think I've never lived anywhere where I've been able to keep it a secret. Other people have always done that for me without my permission. So I moved away from Essex once my mum died, to Buckinghamshire. I came here for a fresh start and before I'd even moved here, people knew I had HIV because my ex's family lives here. So they had already told everybody. So it's not- I've never been able to have that privacy, really. And I suffered a long time. I suffered a really long time. Even with my current partner now, I've been with him nearly ten years and even when I met him I was still very... still very shameful with myself, self stigmatising. My mental health was really bad with it and I was always trying to justify myself because I always became an easy target. Having HIV is a weapon. It's ammunition for anyone that doesn't like you or doesn't want to have anything to do with you or wants to cause you problems. This is something that has become huge ammunition across my lifetime. Not so much since 2018. Since I stood up, I stood up and I spoke up. And ever since then, it's changed.
[00:19:57] *Short musical interlude*
Annie [00:20:07] Tell us about that big change.
Sasha [00:20:08] Well I was already doing lots in clinic at Milton Keynes with them. They always say that, you know, you should be leading this because you're so vocal and strong and passionate.
Annie [00:20:20] What is clinic? Can you explain the context of clinic.
Sasha [00:20:23] The HIV clinic. So obviously we have a specialised clinic like any specialist illness does. So we have specialist nurses and doctors. So I'd go to clinics, I was on a routine appointment in clinic and I was medicated fully. I was undetectable, this was 2018. And they said that this project had come up, a peer mentoring training project. So you can train to be a peer mentor to help other people living with HIV. And it's actually a paid role in London in clinics. And I was like, okay, that sounds good. I've always wanted to meet other HIV people. I've always wanted to help others. I'm a helper. I'm a person that likes to help people. And maybe not only could this help others, but this might be able to help me too.
Annie [00:21:07] Yeah.
Sasha [00:21:09] So I went. Wow, that changed my life.
Annie [00:21:11] How?
Sasha [00:21:12] Because, not only did you learn how to peer mentor other people, but before you even did that bit you had to look into yourself. So you had to unpick your problems and your feelings and emotions living with HIV and how it affected you before you could even think about unpicking it with someone else.
Annie [00:21:38] And what did you learn about yourself in the process of doing that?
Sasha [00:21:43] Erm, I learnt a lot. But I didn't just learn a lot about myself. I learnt a lot about HIV on that weekend too because they taught us more in depth what our virus was, how our virus works, what the treatments did for our virus, what 'U equals U' is. We hadn't heard this term before.
Annie [00:22:01] And what is this term?
Sasha [00:22:03] This term is undetectable equals untransmittable. So if you are on effective treatment and you have an undetectable viral load, you cannot pass on HIV excluding breastfeeding.
Annie [00:22:15] Was that a new information to most people in there.
Sasha [00:22:18] Well, yeah, I think it was the terminology was new. So I knew I couldn't pass it on.
Annie [00:22:24] Yeah.
Sasha [00:22:25] I knew I couldn't because I had two children by this point and I was on my third long term partner. My partner now was that partner. And I knew I couldn't pass it on to him. So that knowledge was there, but the understanding of the knowledge wasn't there. When you sit with professionals and medical staff, it's very different to when you sit with somebody else that's going through these changes in life or have been through these changes in life. So when we were sat doing the training, we weren't just training. We were training with people that were HIV positive too. Everybody had to tell their story in a shorter version. Then we had to do window of the world, which is the unpicking of ourselves and our emotions. And it was a very, very emotional weekend.
Annie [00:23:18] Wow, it sounds heavy, yeah.
Sasha [00:23:19] It was heavy, but by the end of it I was extremely light, Annie. So, I felt like this armour, this like, you know, I describe it as knights armour, it's heavy isn't it?
Annie [00:23:29] Yeah.
Sasha [00:23:30] It's like the world's on your shoulders, the weight of the world. Well that's how it felt before I went to that. Even though I knew I couldn't pass it on, I still hadn't had the support with losing my mum to HIV. I didn't understand my treatment and why, how it worked. There was so many things I didn't understand before that weekend. And by going there, that armour just fell off and I felt like I could just stand up and scream 'I'm HIV positive and I do not care!'. And I do not care what anyone thinks anymore. Because why do I care? Why? One of the trainers had said 'you don't live with HIV, HIV lives with you'.
Annie [00:24:12] Wow.
Sasha [00:24:13] They describe it as it's like owning a pub.
Annie [00:24:18] *Laughs* how?
Sasha [00:24:19] And you're the landlord, but they're just like leasing it. They're just borrowing your body, you know, renting it. That's what they were trying to establish. They were using all these different terms of, you know, you are not HIV, HIV is something that lives with you. And you are you. And it just changed so much. And at the end, on the last day, I just burst into tears and they were like, are you okay? And I'm like, oh my God I just feel so relieved. And from that moment forward, I was standing up in front of the mayor in London, in London City Hall, and I was doing catwalks for Powers, and I was doing press releases and I was doing the radio and TV. And literally I was just going from one step to another.
[00:25:00] *Short musical interlude*
Annie [00:25:11] So you had two kids at this point?
Sasha [00:25:12] I have two kids at this point, yeah.
Annie [00:25:14] How did this weekend affect you as a mam? As a partner, as a mum, you know, at home.
Sasha [00:25:21] It changed everything because even like my sexual relationship.
Annie [00:25:25] Yeah.
Sasha [00:25:25] It affected that. Having HIV affected that, not because the virus- the virus is asleep. I don't need to worry about the virus. The virus is under control, but I wasn't under control mentally.
Annie [00:25:37] Yeah.
Sasha [00:25:38] So that would put a big burden on that. And it put a big burden on that, you know, I was never a good enough mum, because I was HIV positive. I wasn't a good enough person because I was HIV positive. I hated my medication. I, you know, it just, it's like a minefield of mental health. Even now for people that are diagnosed with HIV. Like, we just had a new person come out on one of the groups we've got who are HIV positive and the first thing they said is I've just found out I'm HIV positive, I don't know what it means for me anymore, I don't know what my life means to me anymore. Am I going to have a relationship? What's dating going to be like, oh my God, I'm going to get rejected? These are all the things that come with three letters.
Annie [00:26:21] It's all the stigma.
Sasha [00:26:25] It's all the stigma. It's the stigma behind it. And it was the year of my 30th I did all this. So I was 29 years old and I was still living in that hole of stigma right up until that weekend. Regardless that I had a decent fiance, I've got lovely, healthy children, I have a stable life, I was working. I had the normal bubble. What they class as normal. But the mind wasn't normal because HIV was always at the forefront of everything.
Annie [00:27:00] Can we talk about you as a mum? The lead up to having babies, being pregnant and this is all pre this weekend. So this is all when you were still living with your own stigma as well as everyone else's. How did that affect- I mean, I don't know if having HIV affects being pregnant or labour in any way?
Sasha [00:27:20] Well it does, yeah. It doesn't affect you medically if you're undetectable. It doesn't affect you medically at all. It's decisions and options that are affected. I'll start with my first child. So he was born in 2006. So I was a young mum and I thought I was never going to be able to live life and have a child. And one thing I wanted when I was a young teenager is that I always wanted children.
Annie [00:27:44] So how old were you?
Sasha [00:27:45] 17, when I had him almost 18.
Annie [00:27:48] Right.
Sasha [00:27:49] I was their first child born with HIV at St Mary's to have a baby. So they didn't know what they were dealing with. They didn't know U equals U then. They just knew that if I had a caesarean, I was more unlikely to pass it on.
Annie [00:28:02] Okay, so you had to have one.
Sasha [00:28:03] So yeah, I actually had him eight weeks prem, unfortunately, because he was poorly but I blame myself for that. Because I thought that that was because I was HIV positive. It wasn't. He was born negative. I wasn't allowed to breastfeed. I was doing studies all the way through my pregnancy because they didn't have this knowledge. I was in hospital at appointments between both my local area and London. You could feel the tension between the local area of a HIV positive mother compared to the HIV clinic. The stigma was there. Everyone automatically presumed you're doing a bad thing. When I say everyone, I'm excluding HIV clinics because they are more clued up than anyone. But outside of that, like, 'what are you doing? Why are you having a child? You're HIV positive.' Those sorts of-
Annie [00:28:55] Got you.
Sasha [00:28:56] Feelings and emotions, you can feel them. So when I had him, it was very like, you have no option. This is it. There's no more.
Annie [00:29:03] And when you found out that your son was HIV negative.
Sasha [00:29:07] Well, that took five years when he was born, and he had quite a lot of blood tests. So when they're born, they have two weeks of the HIV medication for babies. And then that's just their prevention. It's a bit like prep.
Annie [00:29:21] What? What's prep sorry? For those who don't know.
Sasha [00:29:24] It's a prevention drug that people can take. If anybody goes to clinic, sexual health clinic, that could potentially be put at risk of transmission of HIV, they can take prep. So it prevents them from contracting HIV.
Annie [00:29:39] Right. So your baby was put on that, or a version similar.
Sasha [00:29:43] Yeah. Which is now created prep. So, so that's what he was on. There was quite a lot of tests over his five years and they were all negative. So once that five year one was done, it was completely negative. That's it. Now you only have birth, three months, one year and two. And they all came out negative and obviously I was ecstatic, but I was also very, very poorly. Pre-pregnancy I wasn't medicating. Because back then the medications weren't very nice. The drugs were still very, very horrible. The childhood ones I compare to chemo.
Annie [00:30:27] Wow.
Sasha [00:30:28] Because they were made from cancer drugs. And also, I've had friends that have died of cancer that have been on them. And what they explain is very similar to what I felt. Getting older, they got better than that. They changed over to, to what I'm on now, which is antiretrovirals. ART's.
Annie [00:30:48] And what are the side effects of those? If any.
Sasha [00:30:50] Well now, much better. Depends on the person. In my teens, they were steel, they made you tired, they made you sick, they made you have headaches. The fatigue was unbearable. It actually felt for me, it felt better not being on them than being on them. So I didn't take them until I found out I was pregnant.
Annie [00:31:11] And then did you have to take them upon finding out you were pregnant?
Sasha [00:31:14] Yeah, my partner at the time, my son's dad didn't contract HIV from me. He personally wasn't bothered. So it wasn't like I didn't tell him or anything like that. He knew. He knew before I was with him because of the area. He knew about my condition and he didn't want to wear protection knowing I wasn't medicated and he never contracted it, and that is because sometimes it is harder for a man to catch it from a woman. And there's a whole nother science behind that. But that's not, they can't catch it. They can. But there's a whole science around how that happens.
Annie [00:31:50] What would you say, Sasha, are still the biggest misconceptions about HIV?
Sasha [00:31:56] Where did you get it? That's one of the first questions I always get. Where did you get it?
Annie [00:32:00] Because people assume that it's through sex, that it's through a person.
Sasha [00:32:03] It's the assumption. There's lots of assumption around it that needs to change. I used to get so angry years ago, but I don't get angry anymore. If someone says something that gives me an opportunity to educate, I will educate. If someone pulls a face when I tell them I'm HIV positive- I told someone the other week in baby group because I've got a toddler and she was just like, okay, so how does that work? I was like, perfect. Because not only am I speaking to you, but everyone around you is listening because they're now intrigued, because they've heard me tell you I'm HIV positive. You know, so that's my goal, is literally just to educate as much as I can. But the misconceptions are just like, it's still a gay man's disease. It's still an African disease.
Annie [00:32:48] How has your attitude to your medication changed over the years?
Sasha [00:32:53] Dramatically, if one of my paediatric consultants heard this they'd be like, 'It took us years! It took us years! Years we were trying to get her to take her drugs and years she messed them around'. And yeah, so they tried so hard bless 'em. I used to flush them down the toilet, throw them in the bin.
Annie [00:33:12] But it's understandable when you're a child going, you know, the pain, the discomfort.
Sasha [00:33:18] They caused more discomfort than they felt they were doing any good, and also I didn't know why I was taking them. In 2012, I'd split up with my son's dad at the beginning of the year, I'd had about a year of being single. By the December I had got so poorly from not taking my drugs, I had pneumonia, a chest infection, a virus, and I was in hospital for like two weeks because I was so poorly. And when I got my results through, they were awful. So my viral load was through the roof. So the virus was at a level where I'm surprised I was still alive.
Annie [00:33:51] Yeah.
Sasha [00:33:52] And my CD4, my white cells, that my immune system was at ten, which is nothing. So the general public live with a CD4 between 500 and 1500.
Annie [00:34:04] Oh my God.
Sasha [00:34:05] CD4 also is based on stress, your diet, whether you smoke. So your immune system changes all day long and this is good to know for HIV patients as well, ones that don't know this stuff, because this really helped me out because we used to rely on our CD4 results. And if it was low, even with an undetectable viral load, we felt really heart sunken that we'd done something wrong. They've done away with testing that regularly now because actually that just depends on what time of day it is, what you've eaten, what you've drank, what you're feeling.
Annie [00:34:37] Yeah! What you're going through, stress wise.
Sasha [00:34:39] What you're going through, if you've had a baby, if you haven't. If you've got an addiction, if you haven't. If you're a tranquil person, if you're not. All those things affect your immune system. So when they're saying eat healthy, exercise regularly, help your mental health, mental health will play a huge part in your immune system.
Annie [00:34:56] Yeah, that's so mad. We spoke to a guy called Gabor Maté on this podcast and he talked a lot about that, about how your emotional wellbeing feeds directly into immune system and how so many more women suffer from autoimmune disease than men, because they are in a situation of more stress. They carry more stress a lot of the time.
Sasha [00:35:14] And they have a lot more hormones pumping through their body as well. So yeah, women do but men also live in silence.
Annie [00:35:20] Yes, so they have their own version of-
Sasha [00:35:22] Yeah. So you've got different aspects. But yes, the immune system is literally the controller and HIV will attack it. And when it does that, it doesn't tell you it's doing that until it's broken.
Annie [00:35:36] And there's no signs to say.
Sasha [00:35:39] No. My mum had it at least 20 years unmedicated before she died.
Annie [00:35:46] What were the circumstances of her death? Did she die from HIV?
Sasha [00:35:49] Well, she didn't. She died of AIDS. But on her death certificate, it would state that they died of a HIV related illness to take the AIDS away, to try and take the stigma away. However, this doctor wouldn't have that, so this doctor wrote AIDS and didn't actually do a post-mortem on my mum. She was only 42, so we never actually knew what my mum died of because he refused. I did NHS and stigma at the London City Hall about my mum because my mum was treated like absolute hell in the last 6 weeks of her life. She was treated so, so much like she was a contagious health hazard. She died and I want to know why she died. And the doctor kept saying she died of AIDS. And I was like, no. And I said, you can't tell me she died of AIDS unless you tell me what she's died of to relate it to the AIDS. And he's like, well she's contagious. She can't have a post-mortem. And I said, yes, she can. And he was like, no she can't. I was like, yes she can. No she can't. I was 20.
Annie [00:36:50] God.
Sasha [00:36:51] And I was like, you have to do a post-mortem. 'But she's contagious'. I was like, she's not contagious. And actually that is on record that not one mortician has ever contracted HIV because HIV actually dies when the human dies.
Annie [00:37:06] Right. Why is it that you, the 20 year old daughter, is arguing with the doctor and telling him how to do his job?
Sasha [00:37:13] Well, because he- and he had a junior sign it off as well. So I made him change that too, because that's against the law. So I had fought and fought. And in the end, they took a slide of her lymph nodes and they froze it. So if any students come along, they could play around with it. So a student did come along and play around with it a year later, and she died of Epstein-Barr syndrome, which is glandular fever. So actually that's treatable. And if they'd have listened to me in the wards when I told them to medicate her, she could have come back, potentially.
Annie [00:37:44] What was your relationship like with your mam around then?
Sasha [00:37:49] We were quite hostile when I was in my teens because I was a young girl.
Annie [00:37:52] Yeah, and you were pissed off with her for not telling you when you were 15.
Sasha [00:37:56] Yeah, but we were already like cat and dog before that, and that just made it worse. But I'd moved out after that anyway because I didn't want to live there anymore. We got better, especially when I had my son.
Annie [00:38:06] Is going to say, yeah.
Sasha [00:38:08] Yeah, she was a really good, really good nanny. From when he was born, our relationship changed and we became mother and daughter- because I never had that of my mom growing up, in the last two years of her life, especially the year she died, which I'm holding back the tears by the way. That's where the relationship really, really worked and we became mother and daughter. And I had that bond with my mum that I've never had.
Annie [00:38:35] Yes.
Sasha [00:38:36] So when she died- before she died, I was fighting to keep her alive. And when she died, it tore me apart, unfortunately. It took a toll. A massive toll.
Annie [00:38:47] I'm so sorry.
Sasha [00:38:49] I don't think any sorry's could ever make it better. But what I do now, I do for her. Because if she knew what I know now, I think she would have been okay. And anyone listening, I want them to know once you're on those drugs, once you're established and you've found the one for you, everything will be okay.
[00:39:14] *Short musical interlude*
Annie [00:39:23] So, World AIDS Day is this week that we are broadcasting this episode. Last question that we ask everyone. What change would you still like to see?
Sasha [00:39:34] To normalise HIV more. Because if we normalise it generally.
Annie [00:39:39] Yeah.
Sasha [00:39:40] Then all the other stigma will come down with it. If someone says, I've got diabetes, no one's like, oh my God I'm so sorry. Or, oh my God, stay away from me. There is none of that. It is literally like, oh really? You know, when did you get diagnosed? Make it a normal topic. And I do that anyway, so no one can faze me anymore. Like I've been with friends and someone- I've been maybe on a night out drinking and it's come up, and they're like, oh my God, did you see what they said? And I was like, well what did they say? And they went, they asked you really horrible questions. I said, no they didn't? They asked me questions that gave me opportunity to educate.
Annie [00:40:19] Yeah.
Sasha [00:40:19] That person now will never think twice about the stigma of HIV.
Annie [00:40:24] And they'll never ask those questions again.
Sasha [00:40:27] No. It's that normalising it and supporting the end of transmission.
Annie [00:40:32] Right.
Sasha [00:40:33] Because if we can reduce the stigma, we can help people come to terms with diagnosis. Get medicated. Have everyone in the UK medicated that has it.
Annie [00:40:43] Yeah.
Sasha [00:40:44] Get them all undetectable and then there's no more transmission. We've nailed it on mother to child. We don't have children born with HIV anymore. Yeah. The only time that ever does happen is if people have come in late from other countries. But in a whole, every person who's tested for HIV in pregnancy, pre-COVID, we had quite a few people coming through the doors in my local clinic that were diagnosed in pregnancy and I was peer mentoring just one session. They are told that obviously having treatment prevents them passing it on to the baby and now you can have a natural birth. Breastfeeding, tt's still not recommended. There's not enough evidence to suggest that U equals U is actually involved with breast milk, it's excluded from the U equals U. Because the cells are a little bit higher in your breast milk. There is a study called Nourish UK that's just launched about supporting breastfeeding. There is nothing to say you cannot breastfeed. You are to be supported with your choices. If you do breastfeed, the baby will be medicated. There's lots of breastfeeding going on with HIV parents now and their supported to do so within clinic because the clinic are the ones that know how to work with breastfeeding and HIV transmission.
Annie [00:42:06] Yeah. Sasha, I really appreciate your time for this. Thank you so much.
Sasha [00:42:12] That's okay. Thank you, Annie.
Annie [00:42:18] Thank you so much to Sasha for being so open and so brilliant. I learnt so much from her in this episode and I'd also really like to thank the Terrence Higgins Trust. They're the UK's leading HIV and sexual health charity and they put us in touch with Sasha. We'll put a link to the Terrence Higgins Trust charity in our show notes if you'd like to find out more, or need help with any of the issues raised today. Do let us know what you thought of Sasha and her story. Have you had any experience with HIV yourself? Get in touch on Instagram. You can hit me up there on Annie Macmanus. A N N I E M A C M A N U S. Don't forget to rate, review subscribe if you fancy it and we will be back next Monday as always. Changes is produced by Louise Mason through DIN Productions. See you later.