You have probably heard a thousand times that humans are social creatures, and that it is only because of our social connections that we’ve managed to survive over the years. Like many different animals, we share social behaviours and social interactions. We arrange our lives as part and within a ‘society’, sharing norms, spaces, traditions, institutions, etc.
Our brains are ‘designed’ to understand how much we rely on each other and to build connections, supporting our survival and improving our physical and emotional wellbeing. As part of our social skills we build support networks that help us navigate life stresses, make better choices, and develop healthier lifestyles, through emotional backing, information and practical assistance.
Evidently, disrupting the flow of those interactions can have a negative impact on our day-to-day and overall life. Isolating ourselves from formal (organised groups, HIV clinics, peer support groups) and informal support (like friends and family) networks can affect our ability to read social cues, reduce our capacity for emotional regulation and puts us at risk of negative health outcomes like depression, anxiety, heart disease, dementia, type 2 diabetes, and even death (including death by suicide).
So why do we isolate, when it is this clear that support networks are crucial for success? More specifically, why is social isolation so common amongst many people living with HIV?
Well, despite all the benefits, building and nurturing social networks can be difficult for many of us. Social networks required time commitments and investment, movement around physical spaces and other logistics. The process can often feel forced, emotionally draining and it can put us at risk of feeling socially excluded.
How I reacted to my HIV diagnosis
Over the years I’ve been living with HIV, I’ve experienced many of these challenges. And I know they can often be worse for other people living with HIV, whether they have been recently diagnosed or have been living with the virus for a while.
Naturally after being diagnosed, I needed time and distance to process. Shame and guilt overtook me, and I couldn’t get my head around being with others. I didn’t even want to be with myself. My life was rapidly changing and adjustments meant I struggled to put the time and effort into staying connected. I was having new clinical appointments, adjusting to treatment, learning and getting my head around the reality of living with HIV. Consciously or not, I was determined to make this better or worse on my own.
I was lucky enough that I had people around me who knew what was going on. Friends, and family who loved me and wanted the best for me. But despite their efforts to keep me socially held, I hated them knowing about my struggle and hated my life feeling so different to theirs. I created this ‘me and them’ divide, that meant I couldn’t receive their love or be present when we were together.
It was a real paradox! I needed my support network to navigate this life challenge, but it was this exact life challenge that made me not want to be part of this support system.
I was living in my head, ruminating about worst case scenarios, exploring loops of coulds and shoulds, wishing I would just vanish, and not realising I was making myself sicker than the virus was. Eventually it clicked. This wasn’t or needn’t be a death sentence. This was a life event, a turning point, a challenging situation that I wasn’t going to overcome on my own.
How I rebuilt my social network
It became clear that this could lead to a better life, if I was willing to reconnect socially. But how could I start rebuilding my support network? I wasn’t sure. There isn’t a perfect roadmap.
I started by reconnecting with myself through self-care, acceptance, lifestyle changes and loads of therapy. I became more present, stopping the dissociation and landed back into my body. I started to properly engage with my doctor and other health care professionals, asking more questions, and sharing my feelings. I reconnected with friends and families, accepting their love, reaching out and asking for what I needed.
I decided to further develop my knowledge around HIV and connected with people who had been through or were going through the same. The information and shared experiences gave me a new confidence that meant I could relate differently to people, feel differently when I walked into unknown spaces and pursue new projects and interests. Overall I felt healthier, happier, prettier, stronger and able to move forward. I felt alive again.
I know this isn’t always easy. There are a hundred reasons, thoughts, fears and concerns that make us want to isolate and not engage with the world, with our loved ones or our clinical teams. But trust me, ‘it’s worth another try’ and you don’t have to do it alone. The THT Direct Helpline can guide you through the process.
I’m aware, being connected is never ending work. I recommit every day to nurturing and building social relationships, which doesn’t always come naturally. Tapping into my support networks has gotten easier over the years, but I’ve also learnt to give myself some ‘me’ time when I need it. I reach far and beyond London through online networks, or go hyper local connecting with my next door neighbour.
I find purpose, joy and belonging both through leisure and creative activities like dancing, running, gardening and crafting. Through volunteering and engaging with HIV networks, events, steering and advocacy groups like the UK-CAB, Act Up London or The National Conference of People Living with HIV. And through building borderless networks with Latin American activists doing HIV work in their home countries and abroad.
Support networks are a balancing act
You balance the need for connection versus the desire to be on your own. You balance online relationships versus in person links, connections that relate to HIV with those that don’t. Certainly through that process you will learn to recognise what works for you at any given time.
Whatever that looks like, please stay connected with the HIV community. You can do so through volunteering, fundraising, donating, attending or facilitating peer support groups, doing activism, sharing information or working in the HIV sector. HIV rights remain under threat by different political groups, populist movements and exclusionary policies, whilst HIV support services continue to be underfunded in the UK and the world.
Therefore, it is more important than ever that we strengthen and actively participate in our community, build social resilience and use our range of experiences to navigate the challenges and opportunities of today and the future…in good physical, emotional and spiritual health.
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Newly diagnosed with HIV
Read our frequently asked questions about your new HIV diagnosis.
