Cure Chronicles Episode 12: Matt Webster

The Cure Chronicles: HIV with Matt Webster

Matt is a UK-based HIV advocate and vlogger. He is passionate about spreading awareness and educating people on HIV prevention and testing. Matt shares his story on social media to raise awareness and combat miseducation, stereotypes, and stigma around HIV.

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The Cure Chronicles is delighted to welcome Matt Webster to the show. Matt is a UK-based HIV/AIDS advocate, HIV prevention educator, and a vlogger. In 2011, Matt was diagnosed with HIV. He decided to start sharing his story online in an effort to give others hope when navigating the challenges of living with HIV. Today, Matt is dedicated to using his knowledge, experience, and acceptance of his HIV status to help challenge misunderstandings and stigma around HIV through social media, volunteering, and having open conversations.

Jeff Galvin: Matt, I'd like to thank you for joining me on The Cure Chronicles today.

Matt Webster: Hi Jeff, it's really nice to meet you and thank you so much for inviting me to take part in this really, yeah, really exciting thing for me to do.

Jeff Galvin: Well, thank you, and really, the pleasure was all ours. I really love to get to meet people that are dealing with their HIV diagnosis, and I think that everybody has something to share about their experience that's valuable to the whole community. 

A big concern of mine is the level of stigma surrounding HIV, and I think that brave folks like you that are willing to speak out and help to break the mythology around HIV and talk about the reality really is helpful for people to deal with this. And there are so many people dealing with it, and it's less scary and less limiting than a lot of people think. Also, there's a reason to know your status, and I think that's something that escapes the general public.

Jeff Galvin: But you know, let's start with you. I understand that you were diagnosed in 2011 with HIV. What was your situation at that point? Were you having some sort of symptom of the disease, or was it just coincidental that you happened to find out?

Matt Webster: Yeah, so I got diagnosed in November 2011. Basically, it came about because I was sick for about a week, and I had what was kind of flu-like symptoms, maybe kind of like a bad cold or something like that. So, it had kind of aches and pains, a bit of fever, and I just generally felt quite unwell. 

It wasn't until quite late into the week when I developed this rash down my arm. I kind of thought it looked a bit like something like meningitis. That's kind of when the worry started. At first, I wasn't gonna worry too much. It was like, "I’ve got a cold" or "I've got flu" or just kind of, you know, have something limited and I’ll get through it really. 

Jeff Galvin: We all get them right? Yeah, we just suffer from 10 days or whatever, and then we're fine, right?

Matt Webster: Yeah, that's exactly. And yeah, when I got the rash, I was kind of like, "no, this is something else going on. I wonder what's going on." So, I immediately went to my GP who kind of checked me over and just did a few quick tests and things like that. She was like, "you know, this does look like meningitis. So, I'm going to get you straight into hospital." 

So, straight after the appointment, they're rushing into hospital. They've made me onto the ward, got me hooked up to a cannula and things like that. And then they kind of took a lot of blood. Didn't really fully explain exactly what they were testing for, so I still didn't really have any idea apart from the meningitis.

Now, I was in hospital for most of the evening. I got a nice little meal when I was there, and then they discharged me, said it's not meningitis but, you know, we'll run these tests, and we'll get back to you and let you know what, you know, what it is, what's happened. 

And I think it was about a week or two after being discharged that I got a call asking me to go back into the hospital, and at that point, it was the tropical or the infectious diseases clinic. So at that point, then, you know, the brain was overrunning then, and I was kind of wondering, you know, what have I got? What's going on?

So, I went into my appointment and got my results, and they just explained that it was asked if I'd been tested for HIV before, and I, you know, I hadn't because it was only I'd only come out as gay about eight months-ish beforehand, so it didn't really know a huge amount amount about it. I didn't really know much about testing or even STI testing at that point, so I hadn't ever thought of, you know, getting tested, and yeah, he kind of broke the news to me that one of the tests that they'd run as part of the admissions hospital was for HIV, and then the result had come back positive at that point. 

Jeff Galvin: Yeah, so it actually sounds, you know, not that dissimilar to a large part of the population. They do find out that way because they don't test, even if they think there's some possibility of exposure, and I think anybody that's sexually active, you know, has some level of potential exposure.

Jeff Galvin: After that, basically, you had a little bit of time to think about this before you started getting into advocacy, because my understanding is that you started making videos around 2020. Can you tell us a little bit about what motivated you to do that and tell us a little bit about the kind of advocacy or information that you were putting out?

Matt Webster: Yeah, sure. There was quite a long gap from 2011 to 2020. I released my first video for World AIDS Day in December 2020, and that was the first time I had really talked publicly about my diagnosis. 

I think it's something that I always wanted to do, once I got through my initial stigma and challenges of being diagnosed. It was something I really wanted to do and talk more publicly about, but I never had the confidence to do it.

What triggered me to actually make that step to talk publicly was a breakup with my ex-partner. It was a challenging place, it was quite a long relationship, and it kind of just triggered me into thinking about my life and where I wanted to go and what I wanted to do. I've always been kind of a supporter of World AIDS Day, and I've gone to different events, including the memorial, where we do a candlelight vigil by the AIDS Memorial here in Brighton.

I just really wanted to do something and give something back, and I had this idea in my head of making a video just talking about my diagnosis and my experiences with it. 

I didn't have many expectations; I just wanted to share my experience and hope that maybe just one person would see it and kind of, you know, realize that living with HIV isn't such a life-destroying thing.

Jeff Galvin: Well, I think that's a great theme and we hear that a lot on the Cure Chronicles, that once people really get an opportunity to think about it, and sometimes when they, you know, sometimes they have to be a little bit bold or, you know, sort of take a leap of faith and start to share their diagnosis with others and to see where their support system is, that they find out that living with HIV isn't that different than living without HIV. 

Matt Webster: Yeah.

Jeff Galvin: The pills are not that toxic, and you live a relatively normal daily life. And, you know, it seems like some of the most difficult part of the diagnosis of HIV is that isolation, when people don't feel comfortable sharing this information with their friends and family and being open about it. And that really comes from the stigma surrounding HIV. That it's a kind of scary thing to people that don't understand HIV, that don't have HIV.

Okay, so, you know, give me a Hallelujah on this, or, you know, a yes or no if this is your understanding as well, but my understanding is if you're down at undetectable, you're not contagious. You're not more likely to give it to somebody else than somebody who doesn't have HIV giving it to somebody else. That's remarkable, right? I mean, that can actually normalize even your intimate relationships. And it's really different than when I was back in college and the amazing fear of having that and realizing that you had either a secret or you had something that you would tell that might scare everybody away from you. 

Right, and it's interesting to have these conversations because I guess the more people that understand that situation, the more normal it can become living with HIV. So, it's great that you decided to come out.

Jeff Galvin: Do you mind me asking you: why did it take you eight years? Were you just having such a great relationship, and it just never really occurred to you, or was there anything that was holding you back at the time?

Matt Webster: That's a good question. It's difficult to kind of pinpoint exactly what it was that stopped me, whether it's the kind of just my own personal confidence and kind of being in a relationship and just going through the normal day-to-day life. So, I think it was, you know, maybe even just becoming so comfortable with it that, you know, like you mentioned earlier, it's a very normal day-to-day life. I take just one pill a day in the evening, and that's it. I go for tests every six months, and that's it. 

So, you know, it's a really small part of my life in terms of the management, and, you know, the clinical side of things is not a huge amount there. So, I think, you know, maybe just becoming comfortable with it, becoming comfortable with life, and just kind of getting on with it, really.

I think it just really took that big life event, which was the breakup, to kind of push me a bit further into learning more about myself and, again, kind of where I wanted to go and the person that I wanted to be, really.

Jeff Galvin: Yeah. So it sounds like it just took time, right? You just kind of got used to it and then you realized it wasn't such a big deal. And you still get tested regularly. That's interesting. So what is the purpose of that? If you're taking your pill every day, people still do go get tested a couple of times a year, I guess, it sounds like, and what is the purpose of that?

Matt Webster: I get tested every six months. It’s just blood tests and the normal sexual health screening that I get every six months as well. In the UK, they used to test the CD4 count, which is the white blood cell count in the body. Now, they don't really do that anymore unless your viral load changes.

That’s another thing that the test is for, which is the amount of virus that’s in your blood. They also check for things like liver conditions, because  even though the meds aren't as toxic as they used to be, they can still have some effect on the body. So the check-ins help to make sure everything is in check, and it's a general health check. Once a year, I check my weight, blood pressure, and just keep a good eye on things. 

I recently saw some research that was talking about how people with HIV are diagnosed with certain things earlier than people who don't live with HIV. Because people with HIV get tested more frequently and checked on more often than those who don't, a lot of these things are found earlier in people living with HIV than people who don't, just because of that routine testing every six months. 

Jeff Galvin: Really, it's amazing because as you were talking about how you take normal management of your health, it made me realize you're doing a better job monitoring your health than I'm doing monitoring my health. I think that is great, and that makes perfect sense that you're getting these checkups. That's driven a little bit by the fact that you can potentially get some toxicities that are quite rare, and then I guess they just would adjust your drugs in that case. So, it's not like that's a big deal. They test your liver, some liver enzymes are off, and they're like, "Why don't you go on this version of it instead?" and then adjust it, and it still works the same way, right? Because your viral load is so low that you're considered undetectable, right?

Matt Webster: Yeah, there's times when things start to go a little bit wrong and they can change the treatment, change the meds. You know, myself, I started taking Atripla. Basically, when I got diagnosed, you didn't used to start taking treatment straight away. You used to wait until your CD4 count started to drop, when it was slowly going down, or it was below 350. At that point, that was when they’d start treatment.

So, when I started treating, which was about three years after I got diagnosed, I started on a pill called Atripla, which was quite strong at the time. I had quite a few side effects from it, and not everyone does. It's quite a rare experience to have some side effects from it. And I think I was on Atripla for about six to eight months before they changed me across to STRIBILD, which is what I take now and I've taken ever since and I've had absolutely no problems with it.

So yeah, you know when things start to kind of go a little bit alright, then you know they could, they can change the, they can change the meds and just kind of get things, you know, back on track. You know, occasionally you'll have like, you know, a spike in your viral loads, and you know, just going every six months, it's just a really good way for them to keep an eye on things, make sure everything's gone smoothly, and yeah, everything is, it's been kept in check.

Jeff Galvin: And how invasive is a HIV test, you know, like when they test your viral load or test you know, what, how much blood do they have to take? 

Matt Webster: Usually, it's, I think it's like between four or between four and six like little vials of blood. But this, I don't actually know if it sounds weird or not, but I quite enjoy going to the clinic and going for my appointments. T he nurses and doctors there just, you know, are absolutely amazing and have a good laugh with you, and just, just make you really feel at ease, and almost it feels like a second home, to be honest.

Jeff Galvin: That's fantastic, like that further, you know, normalizes a very normal situation. It is really nice, you know, so these are people that are happy to see you that are, you know, kind of service providers, sort of showing you some love, quite frankly. I mean, we can all use, you know, doctor's experiences, like doctors appointments like that, you know, sometimes in, I don't know if this is some, sometimes the case in the UK, but in the United States, sometimes they have to really rush you inside, in and out, so you never really get a chance to get some human interaction. But it sounds like the HIV clinics are really tuned to that.

Jeff Galvin: So, I know you're an advocate for testing, and you know, certainly managing your health has huge benefits like this. Are there other reasons for people to get tested? What if they don't know whether or not they have HIV? You know, there's a big fear of finding out, and I think you've sort of said already that, well, you know, it didn't turn out to be as big a deal as you might have imagined. You know, I don't know if you have anything to say about that, but what other, you know, when you're talking to other folks in your community or your friends or family or whatever, what sort of things do you say about testing in general?

Matt Webster: I think the biggest thing when I'm kind of talking about testing is how simple and easy and quick it is. You know, for most kind of initial HIV tests, it's just like a fingerprick blood test, which takes, you know, takes minutes. But, you know, it's one of the most important…

Jeff Galvin: Even much less than your visit to the doctor that you described. Oh, so that's like nothing, a fingerprick test? Yeah, a drop of blood is enough, wow, amazing. So that's not very invasive at all, but what about the fear factor? You know, what would you, you know, is there anything that you can do that would encourage people to find out their status? Is it the right thing to do?

Matt Webster: I mean, I think the people that are sexually active, no matter kind of what sexuality or gender you identify as, I think testing is vital. You know, we have goals to end new HIV transmissions by 2030, and you, you know, the only way that you can really do it, you know, at present is by regular testing, is by people getting tested. So, you know, it's so important, because if you don't know your status, and I think the figures are that around 20% of people that contract HIV don't get any symptoms, if you don't test, you don't know.

You could be passing it on without knowing anything, really. I think it's, you know, for a really quick test which takes a few minutes, it's so worth it. 

Jeff Galvin: And you can do something really positive for humanity, right? Yeah, because you brought up the goal of ending transmission by 2030, right? And if everybody knows their status, we could reduce transmission to nearly zero at that point, right? Because if all they need to do is get on meds, suppress the virus, and go back to their normal lives without the fear of passing it to someone else.

Jeff Galvin: Is there anything else that you would share with people that might be dealing with some of the things that you were dealing with upon your diagnosis or as you were thinking about it and deciding whether to come out about it and in terms of managing your relationships and managing your health? I mean, you have the mic, tell me what, tell me anything you can think of.

Matt Webster: Yeah, so I mean, to start really, you know, you kind of touched on earlier that it can be a really isolating experience, but it really can be. You know, it can be one of the most isolated experiences ever. When I first got diagnosed, I felt the most isolated I've ever felt. You know, I went completely in on myself. I didn't feel like anyone else was going through the same thing, but you know, there's hundreds of thousands, there's millions of people across the world that are going through the same thing. 

And you know, for me, what kind of really helped me to get over that was, you know, kind of give myself a bit of time to obviously let the news sink in a little bit. It was quite a big shock, and it was quite scary at the time, and yeah, there were a lot of worries and concerns.

But for me, kind of what really helped was just researching, just reading, talking to my doctors. I eventually got to know a friend that was positive as well, and just talking to him and kind of talking through his experiences and just kind of learning about how he deals with his diagnosis and how simple it is to kind of live with HIV. 

I think that was one of the biggest things that really kind of helped me kind of move forward in life from a point where I didn't think it was going to continue for much longer, just to kind of really understand how HIV works and how the treatment works, and the success of the treatment of how great it is, and how quickly you can go from being detectable to undetectable.

You know, I speak to people, quite a lot of people reach out to me online and through social media, and kind of talk to me that they're struggling, they've just been diagnosed, they're really struggling or they're worried, and people from across the world reach out to me. One person I spoke to regularly started taking treatment and within two, three months, he was undetectable.

So, it's amazing how quick modern treatment does work. And as I kind of mentioned earlier, the management of it is so simple - one pill a day. There's not a huge amount of different factors around taking the meds. I need to take mine with food, but some don't, some do, you need to take it around the same time every day, but taking one or even two pills, it's not a hard thing to do.

I remember I'd take my meds out with me if I was meeting friends or going for dinner, and I'd go and hide when I needed to take my meds. Obviously, I needed to take it with food, so if I was out around dinner time, then I'd go hide somewhere or take it on the side without people noticing. This was before I kind of started talking publicly, but now, just from talking to people and understanding more and more about how HIV works and the prognosis, which is absolutely fantastic now, I don't care. I'll just get it out and I'll take my pill.

Jeff Galvin: And you might even start a good conversation, when you think about it, right? I was just thinking, listening to you, and you were saying that you met somebody who was going through the same thing and you got a chance to discuss it with him. How did you broach that subject at first? Did that person just mention it to you, and then you were like, "Well, I guess I can admit it to him as well," and then you had a great conversation? Or did you actually search around for somebody to talk to?

Matt Webster: And no, so it was the first guy I talked to was a friend of my ex-boyfriend. I think my ex must have told him about my diagnosis and was like, "Can you speak to Matt and kind of help him out a little bit?" That's kind of how that started.

Jeff Galvin: Do people sometimes ask you why you’re taking a pill?

Matt Webster: To be honest, no, because I've already told them about my status before. If I'm taking it around with friends, I can't think of a friend of mine that doesn't know about my status.

Jeff Galvin: It's cool, and it's sounds like within your local community, there’s zero stigma surrounding this.

Matt Webster: That's an interesting point actually. There's little to no stigma in my circles. There was when I first started talking about HIV, and I'm not saying stigma is a really bad, negative thing, it's just people that don't necessarily understand or understand now how HIV works and what the prognosis is like now. But yeah, there were some challenges to go through in telling people and then having to almost feel like I needed to back myself up and say, "Listen, it's not a thing, don't worry."

That's the minority of times, really. Most of the people I've talked to have been really good about it. It's more in my head and I've been worried about what people are going to think of me when they find this out and what people are going to say about it. Really start talking behind my back and you know, will I lose friends over it? But you know, fortunately, nothing like that has happened, so it's been a really, yeah, really positive experience.

Jeff Galvin: Yeah, you know, that's really another thought that I have listening to you is that one of the things that you did is you decided to understand how HIV works and to get more, you know, sort of almost like scientific details about it and that that gave you more confidence in speaking to people about it, which I think is a good thing. So, you know, at least you knew what you were talking about if they had a question, which is, you know, that's great.

I wonder, is that something anybody can do, or do you just have a knack for it? Because the other thing that struck me is that you looked at a rash on your arm and thought that maybe you had meningitis, and I'm like, how many people would know what meningitis looks like? Did you go to the internet looking at rashes until you were like, oh, there's the one I have on my arm looks like? Because then you went down to the clinic and they were like, yeah, it does look like meningitis, come on in, which is impressive. Are you a doctor? What’s your story?

Jeff Galvin: No, I know, I'm not in any medical profession. I work in HR, so it's, yeah, obviously very different. Yeah, I mean, you know, it's weird because I remember growing up in school and watching TV and seeing we used to have like public information adverts about meningitis where they'd say, if you've got a rash and you kind of roll a glass, press a glass against it, and if the rash doesn't disappear, it's possibly meningitis, and I remembered that. Yeah, I don't know, it's just the kind of memory that stuck with me, I don't know why it kind of stuck in my head from, yeah, from being a kid. 

And interestingly, you know, where there was that much education on, and this is probably going on on a complete tangent here, but where there was that much information about, you know, things like meningitis, there was never the same around HIV or sexual health. It was such, you know, a taboo subject, you know, growing up. And, you know, like I kind of touched on it earlier, I didn't know anything about HIV when I got diagnosed, apart from, you know, apart from what I'd seen and heard, you know, growing up, and, you know, people were, you know, obviously getting really ill and, and unfortunately dying from, you know, from HIV, from AIDS. 

And so, it was only those kind of stigmatizing views that I had in my own head at that point, nothing kind of positive or, you know, constructive was in my head. It was just the kind of, yeah, this is the most awful things ever happened kind of thing.

Jeff Galvin: If you don't mind me prying into your, you know, some personal stuff here, but, you know, what, why did you, you know, why did you come out, you know, right around 2011, 2010?

Matt Webster: Sure, yeah, so I've known that I was gay since I was about nine years old, so I was born in '86, and I'd always known it, but, you know, what, what kind of where, so I'm not originally from Brighton here in UK, I used to come from the Lake District, which is a little bit further up north in a really kind of small, small village, and it was, I think, I think mainly just to kind of worry about, you know, people's views on it and, you know, being scared of, of actually coming out, I'm just, just not being ready to, to kind of make that, that leap, you know, I kind of wrestled, wrestled with, you know, with those thoughts in my head for however many years that was, until I was 24.

I went to uni in the northeast of England and I didn't think about it there, even though I knew some other people that were gay as well and had some kind of mutual friends that were friends of friends that were gay. But I never kind of felt right to do it until that point. When I left uni, I moved back to my parents and I kind of moved with the thought in my head that I'm gonna ignore these gay thoughts. I'm gonna be straight, I'm gonna find a girlfriend, I'm gonna have a family, I'm gonna live happily ever after. 

But as time went by, I just realized that's not what it is. I can't just change it. That's me. And once I realized that, it was time to do it. It felt right at that point to do it. That was a good place in my life and I was making loads of new friends. I was like, this is time to do it. Then, about four or five months after I came out, I moved down to Brighton, which is a lot more accepting, a lot more friendly than where I was previously. 

Jeff Galvin: But you still did it where you were in the less gay friendly environment. And it wasn’t as bad as you thought it was going to be when it became open. So it was another experience that you had where you took a brave leap of faith and it worked out. Very interesting. Well look, that's a really interesting part of your backstory as well, and I really appreciate you sharing that with me. Anyway, this has been a great conversation. I really enjoyed it. I hope other folks listening in got a chance to get to know a little bit about you and enjoyed your story as well. I'm sure they did. So thank you so much for being with me today. 

Matt Webster: Thank you.

Jeff Galvin: We'll see you again sometime. 

Matt Webster: Absolutely. Thanks so much for having me on. It's been amazing. Thank you.

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