When you’re told you have HIV or hepatitis C (hep C) or co-infected with both, this news can be shocking and generally takes time to work out what this means for you. Unlike other diagnosis, the emotional and physical changes of HIV and/or hep C can also bring unexpected complications especially when faced with disclosure moments such as who to tell and when. For some of us this can be daunting and confronting, as we’re unsure who to trust and how to tell them the news.
Most of us find ways to deal with a HIV diagnosis day in day out and begin to make sense of things. We look after our physical and mental health and incorporate ways to prevent transmission, including taking daily medication and disclosure. We routinise and normalise the changes. There can also be changes to our identity and sense of self after being told. Some of us deal with the news straight away and feel it’s just another issue to take care of. While for others in the community this is a life changing event, a game changer, and we begin to develop new relationships as a way of working out how to deal with the situation we’re faced with.
Unfortunately, when the news of a diagnosis is connected to behaviour that is judged, stigmatised or illegal in society, like drug use, feelings of shame can make it harder to deal with the news. As highly stigmatised viruses, both hep C and HIV (or in the case of co-infection), this added burden can impact your own self-acceptance.
For people who have learnt to live with a condition like hep C or HIV for a number of years, I can’t help wondering what impact cure (in the case of hep C) or knowing there is no risk of infecting others (when adherent to HIV treatments) has with the recent changes?
I was speaking with a mate the other day and he was telling me about living with hep C for over 15 years and what it was like taking direct-acting antiviral (DAA) treatments. He had cleared the virus and was declared cured! Something to celebrate for a fella who’d lived with hep C and constantly being mindful of the risk of infecting others (flatmates, friends or fuck buddies), living without hep C was an unexpected challenge.
A welcome challenge, but still confronting nonetheless. He talked about the process of readjusting to living without a constant level of awareness of hep C. He said it was the little things, like no longer needing to be mindful about the risk of sharing a toothbrush or a razor. There was no longer needed to disclose to sexual partners or healthcare providers. For the first time he realised how exhausting it had been to live with hep C and the internalised stigma he’d been carrying for all that time. It was the change to his self-knowing that was his biggest readjustment he had to deal with.
As a man living with HIV for over ten years, I can’t help wonder what is going to be like for people living with HIV now we’re ending the risk of acquiring HIV within our communities? Or, when a HIV cure arrives, what effect is this going to have on me and our communities? We’re now in a position of having minimal risk of acquiring hep C, so no more co-infection worries. For HIV negative guys on PrEP and all the HIV poz guys on treatments, what’s it mean for us as a community to no longer fear HIV infection? As people living with HIV, we are constantly ‘dealing with it’. We are a resilient lot and there are always changes we’re dealing with and coming to terms with.
If you live with HIV and are looking for some support contact call Positive Life (02) 8357 8386. 1800 245 677 (freecall) or email us at contact@positivelife.org.au
