Nathaniel Hall discusses HIV, kissing Olly Alexander and much more! (Part 1)
Q: If you can cast your mind back to when you were first diagnosed what were your first thoughts?
Nathaniel - Gosh it's a long time ago, it's been nearly 18 years, yeah I remember it was 2 weeks before my 17th birthday and I remember there being a lot of secrecy around it. I had gone to the hospital of my own accord. I hadn't told anyone, I'd been going for a number of weeks for various tests and they'd been offering the HIV test. I continually refused to have it although they obviously suspected from what I was telling them that I'd been put at risk and I was showing all the signs that I'd potentially contracted HIV. Eventually, I conceded to have the test and I went up from the bus from college so still 16 into the clinic, it was the last appointment of the day and I walked down a very long corridor to a room with 2 chairs and a table with a little box of tissues so it was kind of clear at that point that I knew what was coming.
I talk about it like being hit by a truck, it's devastating news, particularly at that age and we're going quite far back in HIV history really.
Q: What was patient care like at the time?
Nathaniel - I can't fault patient care or the care that the nurses offered. I was there for 2 hours and the nurses stayed long after. I think they recognised that I was still a minor in some regards, just a child but was actually over the age of consent so was actually classed an adult in terms of the fact there was no safeguarding procedures they could follow or have to notify anyone. The issue I had was that it was 6 or 7 years into the advent of antiretroviral drugs so things were rapidly changing in the HIV world but I had a prognosis of quite a specific number of years which was 37 - 40 years left and there was lots of heaviness around the diagnosis such as who to tell and who not tell. This word 'disclosure' which isn't really used anymore and also of course, people weren't put directly onto medication so it was 2008 so it was about 5 or 6 years after I was diagnosed.
Q: That sounds like a long time?
N - Yeah, it was a long time so I lived for a long time with the anxiety of what that was doing to my body with the added anxiety that I could pass this onto somebody, partners etc. Throughout my whole adult life that's all I'd ever known so that really formulated my relationship with sex but I can't get across to people how revolutionary U = U is. The fact that we now know that I can't pass the virus on. If you'd told me that even 4 years ago when it was just starting to appear in not just medical journals but was seeping through into the public eye.
Q: It's only be a couple of years since I saw it widely mentioned in news articles
Nathaniel - Exactly, so that's again something I really need to get across to people with a lot of my activism and talks and I try to be so upbeat and positive about HIV. If you get a positive diagnosis you are going to be fine for the most part and also there's PREP which can stop you from contracting HIV in the first place. There are so many ways now that I have to try and get people to understand that whilst I wasn't diagnosed in the 1980s and 90s I'm not a long term survivor who has scraped through by the skin my teeth I have to try and explain to people that it was still a very different world for people when I was diagnosed and so the ongoing impact of that diagnosis and the psychological impact is actually heavier than the physical diagnosis and anyone with HIV will tell you that. It's the psychological and ongoing psychological, trumatic impact that the diagnosis has and living with such a stigmatised condition has and that's the ongoing work you have to do. In terms of physical health I just take a tablet and for the most part no side effects.
Q: How has your treatment regime changed from 2008 to now?
Nathaniel - I went straight onto atripla which is a once a day tablet, it was the first ever once a day tablet and that was always the goal, to make HIV treatment as easy as possible. People are going to be on this treatment for life and it needs to be easy to take, you need to be able to stomach it and the side effects need to be as minimal as possible. We know if we've seen films like Philadelphia or Angels in America that people had fistfuls of pills that people were taking. People used to joke that they rattled when they walked down the street and that was the world when I was diagnosed, that was the world that was presented to me and that's what I knew of HIV medication.
Thankfully things changed quite rapidly, I went onto atripla as my first line of medication, once a day tablet and it was fine physically but psychologically it had a huge impact and the problem with HIV medication is often when a new one comes out you're the guinea pig. Whilst it's been approved for use they still don't know what kind of wide scale basis what the impact or the side effects of those individual medications are and atripla has significant impact on people with pre existing mental health conditions. I suffer from post traumatic stress disorder and anxiety disorder so I was taking this medication which was amplifying those things. You just sort of bite the bullet and say it's fine you're finding your normal.
Q: Another HIV activist has described it as routine as brushing their teeth in the morning?
Nathaniel - Yeah, that's exactly what it's like and I just accepted those side effects and it was only when I went into a new relationship that he recognised there was something not quite right and he pointed out that it was the medication that was probably escaberating what you're feeling so I went to my consultant and he said 'why didn't you say something sooner?' They now don't prescribe Atripla to anyone who's got a history of mental health. I moved onto a different once a day tablet which is generally fine and it has no physical side effects and I just take it before bed and it keeps me undetectable.
Q: On the subject of terms such as undetectable and PREP it feels like the LGBT+ community are well aware of those terms, do you think that's true of the wider British public?
Nathaniel - So we know that the HIV commission has just released a report and they're a group of charities paving the roadmap to 2030 which is the target to end all new transmissions in the UK and PREP, testing, U = U and condoms so are sort of our 4 ways in which we're going to do that. We know that the stats are showing that PREP uptake is much higher in the men who have sex with men community, we know that is having an impact and you can see that in the figures, the rates are dropping faster.
I think that there is work to be done in the HIV world, over 50% of people living with HIV are hetrosexual so whilst it disproportionately effects men who have sex with men it is certainly not a gay disease and there is certainly work still to be done and we need to remind people that if you're sexually active you're at risk and you should be getting tested regularly; every 6 months and unpicking some of the narrative around it being a gay disease. That was one of my concerns when It's a Sin came out that it was another drama focusing on and when I tell my story because I'm a gay man that it's a drama that focuses on the gay storyline and that's what we often see around dramatisations around HIV and we don't often see the flip side.
Q: I read an article recently that suggested that a significant percentage of hetrosexual people have never even had a basic STI test. What's your thoughts?
Nathaniel - So there was some research at the end of last year around STIs and I think the over 50s particularly have never had an STI test before. I think that people in that age group didn't necessarily have any form of sex education when they were at school and potentially they have gone into marriages or long term relationships and they've got divorced or those relationships have ended they've now discovered there is a lack of information around that and they need to be keeping themselves safe from STIs and the stats show there has been a spike in that age group of sexually transmitted infections so there is real work to be done. I think sometimes forget that I live in this world where I talk about HIV and sexual health all the time but for a lot of people it's just not part of their world so it's really important to find ways in which to remind people that its part of their world and there are services there to look after you and being empowered to look after your sexual health is important and means you won't be in the position I was when I was 16.
Q: So Boris Johnson was recently talking about how there isn't a vaccine for AIDs. Do you find it concerning that our PM doesn't know the difference between HIV and AIDs?
Nathaniel - I find it concerning that the Prime Minister shows up with that hair-do, there's a whole raft of things I find very concerning about this Prime Minister and our current Government. To be honest, I wasn't surprised that that level of buffoonery and idiocy came out of his mouth. Does it worry me? Not particularly because I don't think Boris Johnson is seen by anyone as the arbiter of truth or accuracy so it's frustrating. It's not uncommon and it's not even that uncommon in the medical profession how little understanding there is around HIV and AIDs so it's really important that when I do lots of work with George House Trust and the Positive Speakers program that I speak to GP practices and we speak to nurses and doctors and you've got to remember that someone who is practising general medicine that HIV is going to be a 20 minute session in 6 years of training. People tend to not know and it's surprising that the term 'AIDs' is not really used in the medical profession in the Western World anymore because of the connotations it has and also people don't get it. Advanced HIV is the preferred terminology now. So I'm not surprised that the PM said that and maybe I'm desensitised to it but it was really water off a duck's back.
Q: You mentioned George House Trust, how did you get involved with them and your wider activism?
Nathaniel - I always joke about being an 'accidental activist' and it was never in my life plan to do this. I think a lot of people with HIV often say that but it pushes you into a life of activism and not just with HIV but in a number of areas. I didn't go to George House Trust for quite a long time, I think it was 2011 that I first went and that was because I did a very British thing of pretending that I didn't need help. I didn't tell anyone for 15 years, I didn't go to GHT because I thought it would be circle therapy like the musical. Rent and I didn't want to sit around with a load of depressed people talking about how shit our lives are. That was my own misconception of what that service was and it's actually invaluable to be in a space with other people who are going through it or have been through what you've been through. A shared experience of gay people or trans people makes you feel more relaxed and I often say I don't hang around with the gays because I fancy them, I hang around with them because we have a shared understanding and what it feels like to live in a minority or to go through certain experiences.
I put it off for a long time and I actually started volunteering because I was struggling with work. They were offering a number of amazing volunteering opportunities and that's how I started and it was the act of helping others that helped me. I've heard a lot of other people say that as well and that's what GHT does really well as an organisation. It empowers volunteers and particularly those with HIV to build their skills in mentoring and then since then I've had counselling there and loads of other services. I've gone onto do qualifications so it's an amazing service that I know will be there for me for life and I dip in and out and now I'm delivering projects with my theatre company in partnership with GHT and I know I can turn up on a Saturday coffee morning and be a service user and be looked after.
Q: What would you say to anyone diagnosed with HIV today?
Nathaniel - I think one of the tricky things within our community is that there is a lot of information out there for our community but it is still possible to not know about HIV and miss that education and that people feel so ashamed now if they contract HIV because they feel like they've let themselves down or let the community down in someway or other people will even say that to them. I find that really unhelpful because no one goes out shopping for STIs and that kind of shaming is really unhelpful and if you have those feelings of shame around HIV it's really natural and normal but it's important to get some support and help and to talk through them quickly. I know that I lived with HIV secrecy and shame for 15 years and it plagued my life for so long and it still does and that's because I refused to talk about it or get help so my biggest piece of advice is don't suffer in silence. HIV is totally treatable and there is no reason why you're not going to have a happy, healthy relationship whether that be monogomous or polyamorous. Things might be a little bit trickier but get the support and learn how to navigate all that and empower yourself to talk about your HIV diagnosis because there is nothing to be ashamed of. If you're on treatment you're also not a danger to anyone either so there is no reason why people should treat you any differently!
That is the end of part 1, in part 2 we discuss It's a Sin, kissing Olly Alexander, sex on screen and Nathaniel's upcoming plans.