blog 201218 sebastian

Coronavirus (COVID-19) hasn’t been a slow time for me. Like others, I haven’t been able to be still – I’ve been busier than I’ve ever been; both at work and in my personal life – dealing with, and responding to, the virus.

I work closely with international students, responsible for overseeing their well-being (at the time of writing). Clearly, COVID-19 has turned the education sector on its head and in turn our students’ lives. The past months have therefore been particularly stressful as I focused on the care of thousands of students; some stuck onshore and others continuing their studies but stuck offshore. I’m busy at the best of times, so having to work from home has only exacerbated the hours I work – with my office and kitchen one and the same.

Many of our international students are struggling with what COVID-19 means for them, both personally and academically. They’re either unable to travel home, worried about how their families back home are dealing with the situation, and how COVID-19 could affect their own health here in Australia. Self-isolation has been impacting everyone, but I feel international students stranded in Australia, away from their families have been particularly vulnerable, and I have seen COVID-19 impact them mentally and emotionally. It’s a scary thing to be stuck in a foreign country in a pandemic when you’re young, many of them are under 18. Other students studying with us have been stuck overseas and can’t get back into Australia, and that adds a huge burden to them around the impact to their studies.

Having said that, being able to work from home as a result of COVID-19 has made it easier for me to multi-task, and provided me with the flexibility to put in work hours while also attending to caring for my parents.

I have an undetectable viral load and a reasonable T cell count so if I’m being asked to reflect on the past few months, I’d say I have been consumed with concern for others. Having lived with HIV since early 2000, my main concern during this time of COVID-19 hasn’t been about my own health!

I’ve actually been more worried about what COVID-19 means in relation to the health of my elderly parents, particularly my Dad. He lives with multiple sclerosis (MS), which also affects his immune system along with a few other health conditions. So he was the one who stood to be more impacted by COVID-19 then I was; he’s the one who’s immuno-compromised. Having MS means Dad is pretty much unable to get around without help. He lives at home with my Mum as his fulltime carer, so I’ve appreciated the ability to not have to be in the office. This has meant I’ve also been able to work from my parent’s place which has allowed me to help out with Dad, and give Mum some respite from 24/7 care.

It’s been a super special time for me and my Dad, in particular. For a proud macho Italian man who is now totally reliant on others to care for him, that’s not easy. With the level of care I am helping with, Dad has had to learn to be vulnerable around me. It’s certainly made us a tighter unit. I get my Dad out of bed four days a week and I gotta say I miss not doing it on the days I don’t go to help out. Taking care of my Dad has made me realise how valuable it is that I remain healthy, not just for myself but also be available to care for him, my Mum and the many people around I care about.

The second thing that I reflect on has been the conversations on television about being ‘being positive’ and ‘getting tested’. The first time I heard these terms and realised it wasn’t about HIV, it stopped me in my tracks! It was so surreal that for the very first time in 20 years, the word ‘positive’ wasn’t to do with my virus. Both these terms have been so embedded in the LGBTQI community, and with HIV for so long. It’s been an interesting experience to hear ‘other people’ express their concerns and worries about navigating their lives around ‘not being positive’. It’s been interesting to see how the wider community process that landscape of being infectious or not, of contracting a virus or not, how you might or might not get it, and getting tested to be sure and protecting their health. This is a landscape that most of us who are living with HIV have navigated for a long time.

I’m pleased to see the recent increase in the public dialogue around looking after our health and those we care about. Especially the urging to get tested for COVID-19 and the ways we can look out for each other. In the HIV space, I think the introduction of PEP (post exposure prophylaxis) and PrEP (pre-exposure prophylaxis) has in some ways diluted our conversations around sexually transmitted infections (STIs) and HIV risk, and what people can do to look after their own health. I notice we’re not talking about HIV and other STIs with each other like we used to. It seems the onus is on a pill to ‘fix it all’. I really believe PEP and PrEP, as fantastic as they are, have suffocated the dialogue.

People don’t have to think about contracting the HIV virus, because today there’s not only a pill for that, but there’s probably an app for it as well! I think we’ve started to treat it like a silver bullet. The conversation seems really shut down and people need to educate themselves on how and when to take it. Even with PEP and PrEP, sero-conversion hasn’t ‘ENDED’. As with COVID-19, the more dialogue there is, the more everyday these conversations become, and the more educated people become.

While I see entire countries clamping down with safety mechanisms to keep people safe from COVID-19, we still see HIV seroconversion. I’m super mindful of saying that. It’s a complicated thing to discuss right? I just sometimes wonder. I know too many gay boys who say it’s all going to be okay. They’re taking PrEP, so they don’t have to think about HIV and STIs. And then they’re surprised when it’s not okay. I just don’t think the ways of keeping yourself safe are discussed like they used to be, and can’t help but wonder what the impact would be if everyone was focussed on opening up dialogue in their everyday life!

This COVID-19 experience has also helped me re-jig my own view of my ‘positiveness’. Being positive is a constantly moving bandwidth. The main shift for me has been internally.

When I seroconverted many years ago, I felt like my mortality sped towards me. I don’t know if that’s a common thing for many people when they first become HIV+. When I sero-converted, I was in a place where I didn’t know what the outcome would be, what my life would look like and exactly what having this HIV virus meant. While most people diagnosed today know they can live a long and healthy life, this wasn’t my experience when I first became positive. My own experiences have become part of my outlook, and as a result my own mortality has always been at the back of my mind. COVID-19 made me realise how self-focused I’ve been. By that I don’t mean self-absorbed! For many years, I’ve been seeing the world from a particular perspective, and that’s through the eyes of living with a virus and the enormity that it’s held in my life. COVID-19 has shifted this somehow. Of course, being positive can’t help but tinge my view of life, but COVID-19 has certainly changed my lens and the way I view my life, the world and my place in it. It’s become really clear what my priorities are. I am healthy, I’m able and active, and that’s been important to my parents. Their health has become my centre of focus.

As we move into the next phase of lifting the restrictions gradually, I’m still going to be vigilant about my health so that I can continue to be here for my parents.

For me, this period of COVID-19 has been a really empowering time. Any niggly concerns about my mortality have faded, as I have become focussed on the people around me. Living with HIV for the past 20 years has certainly made me resilient, and I’ve realised I’ve got a really good outlook about all of this.

Living with HIV is a fluid ever-changing reality, strangely enough, this experience of COVID-19 has rejigged things in my own mind, and the reality of HIV resonates with me in a different way yet again.

Sebastian Zagarella has previously shared his journey of disclosure and living an authentic life with HIV in ‘HIV Inside Out’, May 2019.

Published for Talkabout Online #194 – June 2020

Aboriginal and Torres Strait Islander Support
housing support for people living with HIV
Ageing Support
Treatments and Managing your HIV