Why we should no longer talk about ‘disclosing’ our HIV status

14 November 2018

Alongside the emotionally liberating and sexually freeing U = U message, there’s no place for the stigmatising language of HIV ‘disclosure’ anymore, says HIV peer mentor Rob Hammond.

Image of two men embracing

I am truly saddened to hear so many healthcare professionals talking about how they still advise and support their patients with ‘disclosure’ of their HIV status. I believe the word ‘disclosure’ and its connotations of dark secrets, to be deeply stigmatising and one of the last few, clumsy expressions remaining from the early days of the HIV response.

When we, as people living with HIV, feel we are ‘disclosing’ our HIV status to others, we are reinforcing the self-belief that we have done something wrong. That we are somehow less than.

So why do healthcare professionals and people living with HIV persist in talking about someone ‘disclosing’ their HIV status?

A recent conference presentation, “Towards Zero HIV stigma: A review of stigma in healthcare settings”, by Mark Roche from Brighton and Sussex University Hospitals NHS Trust (in the UK), focused my mind on my own personal experience of the stigmatising impact of language as someone who is living with HIV.

Specifically, I tuned in to two aspects of Mark’s research that resonated with me personally, and which also come up time and time again in the course of my work as Peer Mentor Coordinator at the Sussex Beacon in Brighton. The first aspect was around when a person is considering ‘disclosure’ – Mark talked about the perceived stigma that is often more prevalent for a person at this time. The second, wider issue was around stigma being the emotional component of discrimination. Words have an emotional impact – both for the speaker and the listener. In the world of HIV where stigma and self-stigma are so common for those of us living with HIV, it’s important to recognise and challenge stigmatising language. It can come from all sides, including healthcare professionals (yes, the very people who one would expect to be professional and non-judgemental), sexual partners, friends and family.

Healthcare providers and we as individuals living with HIV really need to make the cognitive and emotional shift away from using the word ‘disclosure’. Instead we should ‘tell or ‘share’ with others that we’re living with HIV.

Then the question becomes, ‘Who do we need to tell about our HIV status and why, and for whose benefit?’

Mark Roche made the equally important point that when we encounter stigma and discrimination, our role is not to judge but to discuss, educate, question and challenge the stigma and what lies behind it. I wholeheartedly agree and believe it’s vital both for us as individuals living with HIV, and also for the wider HIV response.

So, unless you’re confessing your sins or admitting to criminality, please don’t’ ‘disclose’ your HIV status again – instead ‘tell’ and ‘share’ with who you want to, when you want to, and in the way that you want to. How we deliver a message more often than not determines how it’s received.

Rob Hammond B.Sc. (Hons); PG Dip.
Psychotherapist & HIV Peer Mentor Coordinator

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Written by Rob Hammond

Psychotherapist & HIV Peer Mentor Coordinator