One in four Australians have reported feeling lonely each week, according to the Australian Loneliness Report published by the Australian Psychological Society. Some news outlets have dramatically suggested that despite being one of the most technologically advanced nations in the world, we’re living through an epidemic of loneliness.

These days, more of our fellow peers are living longer given the effective antiretroviral therapy (ART) we have available in Australia. Those of us living with HIV not only have an increasing life expectancy, but many of us are also facing loneliness with the loss of our peers, friends and loved ones as we age. Some of us are also feeling isolated, especially with the recent impacts of COVID on our social friendships and safety restrictions.

In this post, I want to unpack what we mean by loneliness compared to isolation. I know there have been times I’ve felt lonely surrounded by an entire crowd of people. I’m also wondering if someone is isolated, does that mean they’re automatically feeling lonely?

Both isolation and loneliness can affect health in different ways, so it’s important to be clear on what we’re talking about and carefully define isolation and loneliness. The simplest way to differentiate loneliness from isolation is one is voluntary or by choice, and the other is forced and not of one’s own choosing. When I choose to isolate myself, I still have control over my experiences. I’m still in charge over what I decide to allow into or keep out of my life. When something happens where I have little choice but to accept, such as loss or grief, I’m more likely to feel less control in my life and more distress.

It’s this distinct concept of loneliness, that is distinct between actual and desired relationships. It’s separate from the sense of living alone. It’s also more frequently associated with negative health outcomes, and can also be compounded by the physical aspects of ageing, especially when mobility and physical activity are limited. When it comes to people living with HIV, especially older adults living with HIV, it’s super important to understand more about loneliness, its consequences and impacts on our elders living with HIV.

Many people who have lived with HIV for a long time, are sometimes called ‘long term survivors’ and this label is usually applied to people who received their HIV or AIDS diagnosis before 1996.  Positive Life understands this label may not be acceptable to people living with HIV long-term or adequately represent their lived experience, so out of respect to my elders, I’ll use the phrase ‘living long-term with HIV’ instead.

Currently over 50% of all people living with HIV in NSW will be over 55 years of age. As the number of people living long-term with HIV increases, understanding their health-related needs is paramount. It will be increasingly important that we understand the psychosocial needs of our brothers and sisters living long-term with HIV to ensure we can protect our community and strengthen the positive traits such as mastery, wisdom, resiliency, or self-efficacy.

In addition to complex medical conditions such as multimorbidities and polypharmacy, older adults living with HIV in NSW often also face psychosocial challenges, including anxiety and depression. Many people living long-term with HIV are experiencing the ‘ghosts and the guilt’ of surviving when so many of their peers died. Through the simple fact of ageing, this same group of people also experience the normal impacts of ageing which includes their life experience, friendships and skills but also loss of friends and family through the usual life cycles of friends and relatives passing. Given that many people living with HIV long-term have been forced to experience such a ‘double-dose’ of loss, it is unsurprising that many share a  sense of persistent loneliness.

As the Ageing Support Officer with Positive Life, I’ve learnt so much from the experiences of my brothers and sisters who are living long-term with HIV. I’ve come to recognise that many of the benefits I live with today in my social environment, such as the quality of the HIV medications I take; the calibre of healthcare and pharmaceutical support I get from my HIV clinicians and specialists; the quality and impact that cutting edge research gives me; even the existence of a peer-led and run advocacy organisation such as Positive Life NSW for over 30 years, I owe to my elders who lived through much tougher times than I, despite the past year of COVID-19.

I believe it’s our time now to remember our elders living long-term with HIV and thank them. Stand in solidarity with them, celebrate their lives, acknowledge their struggle and respect their strength.

As a community of people living with HIV it’s incumbent on all of us to do what we can to ease cycles of social isolation for each other, to create and facilitate ways of connection. Let’s reach out and remember we are all part of this community. These trailblazers are still here, let’s not forget them! One day soon, it may be us walking in their shoes.

If you’re over 45 years and need any support, even if you want to talk, please call us on (02) 9206-2177, 1800 245 677 (freecall) or email contact@positivelife.org.au

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