Magazine FS magazine 2020 FS 181 Living with HIV in the time of COVID We spoke with 8 gay and bi men living with HIV about their year, how they coped with lockdowns and navigated the global pandemic... How has 2020 been for you overall? Gosh, where do I start? A helter skelter and roller coaster ride all in one really with so many ups and downs physically, mentally, emotionally and energetically. For me, definitely a year of 20-20 vision that has unearthed so many things personally, in the family and relationships, as well as outwards in world events. I was also offered a job just before at King's hospital as an HIV Patient Rep that started end of September, which has now got me out 2 days a week, which is good. How have you coped with the lockdowns? It has been a trying time but has also had its good points where I have managed to rest a lot. On the other side, as a person who is normally quite mobile and active, it has been trying as I noticed that I have developed a few ADHD type tendencies, as being at home restricts me. Being with parents is a blessing but it has also been a challenge, as normally we are not always around each other 24/7. A lot of family healing has occurred due to escalated issues that have been looked at. I did a lot more inner work too, as we learn a lot about ourselves when being put in a situation or a few that we have never been through. I have noticed many relationships ending within and outside extended family. I have also really enjoyed my long walks in nature and a local green area became a nice social meeting point of support to speak to a few locals when I have needed to get away. Did living with HIV have an impact on how you dealt with or viewed COVID? It did worry me a little at the beginning but when clear guidelines were given regarding not being in a shielding category, it was a relief. Having my hospital appointments on the phone was a new experience, as I am a face-to-face kind of guy. As I am aware of quite a few self-care tools due to my holistic health background, it made a big difference in coping mechanisms. I am grateful for my daily yoga, meditation, breathwork and chanting practice. As the pandemic hit, did you have any concerns as someone living with HIV? I felt that to a certain extent we have been ignored along with those with other chronic illnesses but I also noticed how NHS staff were trying their best in very testing times. As I had developed a health issue during this period, access to a GP and dentist was quite challenging as an issue that surfaced in July has only been resolved in the last few weeks. So I am finally relieved even though it means I have had a tooth extracted! Tell me about something great that has happened this year. I started my new job and I have seen and felt what it is like to see human beings showing the kindest purest benevolence, care and unity at the time of a global disaster which confirms there is still good left in the world. What are your hopes for 2021? To be healthier, fresher and to continue with my holistic therapies somehow and hopefully come across some real love and romance. But above all, to love me more and engage in self-care knowing that this is a birth right for all of us. How has 2020 been for you overall? 2020 has been a bit lonely to be honest. Other than the few ladies I work with, I haven't really seen many other people other than mum and dad. How have you coped with the lockdowns? I've not coped too well with the lockdowns. I'm OK and all, but I've put on lots of weight and kind of lost motivation to go out as I'm kind of paranoid about people not wearing masks. Or simply having a lanyard, yeah they're exempt but that doesn't help me stay safe. Did living with HIV have an impact on how you dealt with or viewed COVID? I think having HIV has made me more aware of people following the guidelines and it makes me frustrated when they don't. As the pandemic hit, did you have any concerns as someone living with HIV? When the pandemic hit I was concerned about how it would be for myself or anyone with HIV if we got COVID, as there was no research or anything I could find online as it was all so new. So I was a bit scared at first. Tell me about something great that has happened this year. Being at home so much this year I had a chance to sort my credit score out at least... other than that I'm pretty much writing this year off. What are your hopes for 2021? I'm hoping to be lucky enough to meet a nice guy to look to settle down with. This year has made it very apparent that I want nothing more than a simple life with a loving significant other. And maybe a dog too. How has 2020 been for you overall? I’ve been lucky. I have remained on furlough since March, my friends and loved ones have remained safe and healthy but overall 2020 has felt like being on bad rollercoaster that your friends force you to go on against your will. No excitement in the queue (nothing to look forward to), nervous hope and optimism as you go up that step incline (oh it’s going to ok, it’s not gonna be that bad), not knowing what’s coming next (panic, fear, stress), disappointing ride back down (oh it’s bad, it’s really bad, I want to get off). How have you coped with the lockdowns? To start with I was almost looking forward to having some personal "me time" to have an excuse to be lazy and do nothing. Turns out forced relaxation is not fun. I began to feel pleasure by baking banana bread and host Zoom quizzes. But in the end I worked on my self. Fell back in love with long forgotten hobbies that I always said I had no time for and I have reconnected with friends that I never made time for. Did living with HIV have an impact on how you dealt with or viewed COVID? Honestly, no. There seemed to be a lot of conflicting messages around if being HIV-positive meant you were in a high risk category or not. So I made the conscious decision early on to limit my news consumption and remove myself from social media. I decided as long as I stick to my ARV’s, and my cd4 was good, then I’m doing the best I can. I have been HIV-positive for over 10 years so I know I’m as healthy as I can be. As the pandemic hit, did you have any concerns as someone living with HIV? I had only restarted treatment in October of 2019 and I was still having monthly bloods by March so I was concerned how lockdown would affect this and treatment/changes that may need to happen. The nursing team at my clinic were fantastic and I felt reassured and safe all the way. My worry now is vaccines and how they may interact with ART’s. Tell me about something great that has happened this year? I discovered myself again. Being forced to spend time alone, reflecting, led me to hit a rock bottom with my mental health that I don’t think I would Have ever allowed myself to get to. I was forced to look at, address and focus on issues I have spent years running from. I’m leaving 2020 in a much better metal state than I entered with. What are your hopes for 2021? Of course I wish for a cure, but what I really wish is that we all learn and remember lessons from this pandemic. Be that how we value others but maybe don’t tell or show them enough, how to come together as a society for the greater good, or how to look after ourselves and appreciate the small things and to take nothing for granted. How has 2020 been for you overall? Like most people, 2020 has been challenging and sometimes frightening. It's been a rollercoaster ride with more downs than ups. But it has thrown up a lot of opportunities for new work and to build new professional and personal relationships. The lockdown also gave me chance to pause and reflect on all the things going on in the world and my place in it. I’ve been busier than I ever and I think I’ve engaged with more people via Zoom in nine months than I have in over than fifteen years of going to HIV conferences! How have you coped with the lockdowns? I could say as a 51 year old Black gay man living with HIV that social isolation and social distancing (people crossing the road to avoid you) was nothing new and I’ve had years of practice. But to be honest I’ve been very lucky. I live in a LGBTQ housing cooperative with a big shared garden and my friends, other Black gay men, are my neighbours. We created a lovely community who look out for each other and make sure each of us is doing ok. I am a really sociable person, so I miss going out dancing, the theatre, eating out and the movies. But I’ve reacquainted myself with my favourite books and films. And my daily walks with my dog Travis have been a lifesaver and great for my mental health. Did living with HIV have an impact on how you dealt with or viewed COVID? Living with HIV impacted how I viewed and dealt with COVID as I’d lived through the height the HIV epidemic in the UK in the 1980s and 1990s. I was familiar with the panic in the media coverage, a government response that was confused, conflicting and contradictory, the communities most at risk and affected being the last to be considered, the NHS and community stepping up. Very often it felt like history repeating itself. We now have people with Long COVID. Will they become this generations ‘long term survivors' and will they be just as forgotten when this is all over? As the pandemic hit, did you have any concerns as someone living with HIV? Initially, yes. But that was due to the confusing government advice that said that people with HIV needed to shield. However this was quickly amended. As lockdown progressed, I did have concerns about accessing my HIV meds and having my viral load/CD4 bloods done and a regular STI check. Fortunately, as soon as they were able to, my clinic set up appointments and I was also able to order self-test kits online. Talk to me about the innovative work Prepster has done during the pandemic. Prepster + The Love Tank have been really busy during the lockdown. We kicked off by hosting a webinar to make sure the communities we work with had the right information to start lockdown. This was quickly followed by our COVID Tips and Tricks Hub on our site, providing 28 sections with useful information on everything from accessing PrEP to managing your mental health. We knew that people would still be hooking up and having sex, in-spite of COVID rules, so we took a sex positive, harm reduction approach and launched our ’Sex in COVID programme. I'm really proud of the HoT comic book series targeting black gay and bi men that we produced in partnership with Heads or Tails NYC. Oh yeah, and we also launched the Long Time No Syphilis programme of work and videos, which gave us an opportunity to promote online self-test kits. Tell me about something great that has happened this year? I'm going with few things because we need to remember there is light no matter how dark the tunnel may seem. Although the circumstances were horrific and tragic, the killing of George Floyd has fuelled the Black Lives Matter movement globally and kickstarted a long overdue reckoning and conversation about race in this country. It warmed my old activists heart to see so many young people take to the streets and demand racial justice over the summer. I'm also delighted that we finally have PrEP on the NHS in England. All that hard work, long meetings and emails is finally paying off. And finally the best thing that happened? I became a great uncle to a beautiful baby girl! What are your hopes for 2021? Like most people across the world I hope we can get a vaccine and get back to ’normal’. But I know that normal will be very different. I hope we've learnt from this period and that we are more compassionate and caring. I hope that there's an effort to try to address the inequalities that COVID has shone a floodlight on and we are motivated to hold to account and call out those that don't serve us well. But most of all I just hope I can go dancing again. How has 2020 been for you overall? 2020 has been turbulent. At the start of the year, I was feeling trapped in some destructive habits. Over the first six months, the world paused, I was forced to reflect, and look inwards and evaluate my life so far. I became public with my HIV diagnosis in June, and haven't looked back since. A short time after, I went through the harshest break-up yet, a lot of which was a direct result of hidden stigma, and choosing the unknown future of being single compared to the comfortability of a relationship was tough. Especially as this person was my first partner since becoming positive, and they'd become the template for how I would understand, and expect other people to react to my diagnosis. Becoming my own best friend has been the main takeaway from 2020; and I'm glad for every time I chose right, and every step I took, no matter how heavy. How have you coped with the lockdowns? In the first lockdown, I lived a soothing existence. I found myself in a new relationship that had only begun a few weeks before lockdown was introduced. We spontaneously moved in together, expecting the pandemic to be over shortly; we lived with each other for four months, and it was the greatest experience of my life so far. Cooking, cleaning, exercising, playing, all with someone who was so new and yet at the same time a best friend... I couldn't have wished for better. Unfortunately, once we emerged back into reality it became clear this was a product of the environment, and wasn't built to last. The person I was in lockdown, I took with me; the other person involved decided that, for them, lockdown had simply been a getaway from their real life, and so I wasn't needed anymore. This second lockdown had been the polar opposite. Isolating, and lonely. I rely heavily on my own 'sad boy winter' playlist, but honestly I'm grateful. For so much time to figure out my goals and ambitions, to utilise my talent and charge this into new dreams, new career highlights. With 100% focus on me, I'm thriving. Did living with HIV have an impact on how you dealt with or viewed COVID? Initially I was worried, and this is why I isolated a couple of weeks previous to the official lockdown announcement. With COVID being new, and myself only diagnosed for a few months, the fear was pressing. 'What if I am more susceptible?' was a recurring thought. I remember being so strict with disinfectant, masks, antibacterial hand-sanitiser. Now, I'm more confident, and I still take precaution, but I live in no fear. As the pandemic hit, did you have any concerns as someone living with HIV? Absolutely. I was just about becoming knowledgeable about how to live with HIV; so with an entirely new risk of another virus, I felt caught between them both. The fear that drove COVID crept into my own insecurities about HIV, for sure. And seeing people's reactions to COVID didn't fuel confidence with becoming public about HIV; I associated them both as to be feared equally, something of which I now completely reject. HIV was not a choice for me; I was in charge of my sexual health, and unfortunately the person I engaged with, wasn't. I am now confident with my status, and hope if anything that COVID further breaks stigma, because just like anybody can catch COVID, anybody can catch HIV. All it takes is one time. Tell me about something great that has happened this year? I've reached a point of self love unlike any I've ever felt. I started the year at my lowest, and I'm finishing it with a fire in my soul. I feel comfortable being alone not chasing the approval or affection of others. I've also now spent more time this year actively sober than in recurring drug usage. I fell into substance abuse heavily after my diagnosis, and now I can't even recognise the person I was. I'm so proud of myself. What are your hopes for 2021? I'd like to further this path of self-fulfilment. To be the best person I can be to anyone who may need it; friends, family, strangers. I've started @bplusuk across various social media platforms, which provided education and information on the reality of living with HIV as a part of a new generation as well as stressing the importance of remembering our history. I simply want to do as much as I can, and not keep my strength to myself. How has 2020 been for you overall? 2020 has been a weird and to a certain extent difficult year. It has been a year of reflection, introspection and a lot of self-care. I have been very lucky and privileged as I've been in good health, I've been busy with work and I've managed to stay connected online with friends and family. Loneliness has been hard to navigate at times and I've had to become creative to avoid boredom. How have you coped with the lockdowns? I was trying to find a good balance between busy or entertained, but also allowing myself to enjoy doing nothing. I guess a coping mechanism has been trying to embrace all my feelings, the 'good' and 'bad' ones. I've also tried to find a good balance between living in the present moment, whilst having things to look forward too. I journaled and kept a log of my weeks. I wrote thoughts, ideas and moments in paper to avoid time squashing together and to ground myself. I reduce my news intake and my social media use. Did living with HIV have an impact on how you dealt with or viewed COVID? Yes. I guess somehow I knew some of the feelings associated with loneliness, lack of control, isolation and lack of intimacy. I experienced similar feelings when COVID hit, and when I was first diagnosed with HIV. I also knew that I need it to stay strong, hopeful and resilient. I knew that I didn't want to be judged or be judgmental of anyone's actions or behaviours. So I avoided that. No pointing fingers. I knew I needed to focus on myself. I knew I needed to reliable sources to stay informed and knowledgeable about the virus. As the pandemic hit, did you have any concerns as someone living with HIV? Initially, I did. I had concerns about my physical and emotional health. As healthy as I am or feel, I had thoughts about my ability to live with another virus. I was uncertain about how vulnerable I was or could be. I didn't know if my condition or treatment could increase or decrease the likelihood of catching COVID-19 or getting seriously ill with it. I understood that my HIV didn't put me at higher risk. I worried about feeling more isolated and the impact that it could have on my emotional wellbeing. I wasn't sure, how strong mentally and emotionally I could be to deal with the sense of collective grief. Tell me about something great that has happened this year? I think I've built stronger connections with some people. This has brought me closer to some colleagues, friends and family members. This has made me appreciate myself and be grateful for things that I used to take for granted. This has shown me how resilient I am. This has taught me a lot about leaving in the present moment. Focusing on making the best out of every day, trying not to overthink about the future. What are your hopes for 2021? I hope that this crisis makes us change many of our old ways. I hope that we can care for the most vulnerable in our society. I hope we can level existing social and health inequalities. I hope I can hug my mum, dad and sister. How has 2020 been for you overall? Actually pretty positive. I always try to look on the bright side. I live in a lovely flat in a pleasant part of town with nice friendly neighbours. We have a WhatsApp group for the building, and many people offered each other support with shopping and things if we needed it. I wore a mask as soon as they were easily available in shops, and apart from feeling a little bit paranoid that I hadn't washed my hands often enough, I felt mostly happy about how things turned out, compared to how things could have been. How have you coped with the lockdowns? Well, I rent a desk in a co-working space, and my office was never closed, but I chose to work from home during the first lockdown. Certainly, my cat was happy to have the extra company! The second lockdown seemed even easier, because I chose to go to the office. I don’t mind wearing a mask, and was never a big restaurant or bar-goer, so the only real difference was that I couldn't go to the gym. Instead, I signed up to an online personal trainer for the moral support, and bought some home exercise equipment, and am now fitter than I ever was! Did living with HIV have an impact on how you dealt with or viewed COVID? For sure – being diagnosed with HIV gave me a sense of perspective. We all have to go one day, and once I'd got over the shock of the diagnosis, it reminded me to live life to the full. I am also more aware of other people's health; like many people, I am less concerned about getting it myself, than I am about passing it on to others who might not deal with it so well. As the pandemic hit, did you have any concerns as someone living with HIV? I've been HIV-positive and receiving effective treatment for over 10 years now. When I was first diagnosed, I was told that so long as the treatment is working, I would be able to lead a perfectly normal life with no effects on my life span; this means, I believe myself to be at no greater risk than any otherwise healthy person. Aside from my HIV diagnosis, I am fit and well, and it seems like my HIV will have no noticeable effect on my body's resilience to COVID. Having something like diabetes, heart disease or even being overweight, on the other hand, are much more likely to lead to worse outcomes. Tell me about something great that has happened this year? I moved home, and it was wonderful to sit in my new flat enjoying the views and spending more time on the sofa with a good book, as well as going for long bike rides in spring sunshine, travelling on no pre-planned route, just because I had nothing better to do! What are your hopes for 2021? A vaccine is around the corner. I hope that we don't spoil the momentum by all meeting up around Christmas and sharing the virus, becoming ill and making others ill, when we could just wait just a few more weeks and know that we and those around us are safe and protected. And I'm looking forward to the first time I can go out clubbing again – it’s going to be a blast! How has 2020 been for you overall? Like many people I’ve oscillated between ‘this is horrible’ and ‘this could be worse’. I’m grateful to still be in work, my life is full of people who have not been so lucky, and to have remained healthy. But I’ve really missed day to day contact and I worry about the state of the world terribly. How have you coped with the lockdowns? I’ve mainly been very careful throughout the year so the difference between lockdown 2 and how I was living my life just before wasn’t all that much. Did living with HIV have an impact on how you dealt with or viewed COVID? This isn’t my first pandemic. Wise voices heeded and shared the lessons from HIV: make sure that everybody is informed, equipped and empowered; blaming and shaming do not make for good public health. As the pandemic hit, did you have any concerns as someone living with HIV? The evidence, right from the start, was that there was not any substantially greater risk for people with well-controlled HIV, so I’ve felt fairly bullish about my own health. But, because I work with colleagues all around the world, I heard terrible stories about people getting ill and dying, because they could not access food or medication under lockdown. 24 years after the arrival of effective treatment, hundreds of thousands of people still die of HIV related illness every year. That’s a disgrace. As the Executive Director of NAM, how do you view HIV stigma in 2020? Are we turning a corner? I find our progress frustratingly slow. I think it’s extraordinary that some gay men still operate a policy of sero-apartheid, not dating anyone who is HIV-positive. But at the same time, I see, daily, increasing numbers of people willing to be open about their status, and receiving love and support for their openness. HIV stigma is huge and engrained but every time we talk about equal life expectancy, or that HIV treatment prevents transmission, every time we’re just visible, and healthy and happy, we chip away at that stigma. Tell me about something great that has happened this year? Hmmm. Well my hair got longer under lockdown 1 and I liked it and kept it. Also, I won an award for being the best health campaigner on Twitter and was named one of the most influential LGBT people in the UK, so those were all nice things to happen. What are your hopes for 2021? I don’t think we are going to return to the way that things were. The level of national debt, the irreversible changes to the ways we live and work, the devastation of the high street and to bars and clubs mean that 2021 will be very different. But I’m looking forward to seeing people again. And hugs. I really miss hugs.