Disclosure, activism and getting on with living

Krishen , 30, is touring the UK to talk about living with HIV. From his own experience, he  writes about the challenge of disclosure, and his own journey to activism. Cover image credit:  @theomcinnes

‘Don’t run, stop holding your tongue

Maybe there’s a way out of the cage where you live

Maybe one of these days you can let the light in

Show me how big your brave is…’

– Brave by Sara Bareilles

This year, after 7 years of living with HIV, I finally decided to go public with my status.

Beyond the initial concerns about facing my mortality, getting my head around all the medical facets of living with HIV and learning to embrace the daily ingestion of antiretrovirals, there is also the business of getting on with living.

For those who have moved into this next phase, once the shock and immediate terror have abated, a new set of challenges become apparent.

Disclosure is one of these challenges: how to do it, when to do it, how to react when it doesn’t go too well.

The simple reality is that while we now refer to living with HIV as a chronic illness similar to any other, talking about HIV is not like talking about other chronic illnesses. This is not because other conditions may not be as serious or as potentially fatal; it’s because of the stigma associated with a primarily sexually transmitted infection historically connected to gay men.

Disclosing that you have diabetes remains vastly different from a disclosure of HIV. There is the instant shame, the fear of rejection, the acute feeling that this is something that you brought upon yourself. This is largely related to the immense stigma; public knowledge about HIV transmission has failed to keep up with medical breakthroughs and early prevention campaigns unwittingly cemented the idea that HIV positive people should be feared as the carriers of the virus.

In 2017, someone who is HIV positive, on medication, and has an undetectable viral load should no longer be a cause for unwarranted fear – they pose virtually no risk of passing on the virus. It is stigma and inequality that continue to drive the epidemic. People who are unaware that they have HIV – because they do not (or cannot) get frequently tested –  are more likely to pass on the virus.

I understand the reasoning behind messages such as ‘disclose immediately’; the serious legal implications of transmitting HIV to a partner without disclosing; and why dating sites may have a little box to tick ‘HIV negative’ or ‘HIV positive’. But I have also lived through the messy reality of having HIV. Often these mechanisms actually act to perpetuate stigma and get us no closer to a world free of HIV. The criminalisation of HIV transmission is particularly draconian and does little, if anything, to decrease HIV infection rates.

From disclosure to activism

This decision to disclose my status as HIV positive has been in equal measures both liberating and terrifying. Apart from disclosing to family members and a few close friends, I had never felt the need to speak about my status on a broader public platform.

After moving to London from South Africa, I became involved with an organisation called Youth Stop AIDS. This youth-led organisation actively engages decision makers and the public in the campaign to end AIDS by 2030, in line with the United Nation’s Sustainable Development Goals.

While I had never thought of myself as an activist, I quickly learned that ‘activism’ can take on many different forms; sharing my story of living with HIV and overcoming my fears of disclosure in order to educate others could certainly be a compelling form of activism.

Youth Stop AIDS’ latest campaign – ‘It Ain’t Over’ – instantly connected with my experience of living with HIV.

While the slogan speaks more broadly about the fact that HIV infections are still occurring, that AIDS deaths are still frequent and that we have taken our focus away from the epidemic, it resonated with me on a deeper level. The incredible gains made in terms of accessing life-saving medication now means that there are many individuals living with HIV around the world. I am one of those individuals. And my story isn’t over.

One of Youth Stop AIDS’ largest annual events is the Speaker Tour: a nationwide tour around the UK, where young people living with HIV share their stories with the public. While I was initially terrified at the idea of disclosing my status so publicly to such diverse audiences, I decided to take the leap and I put myself forward as one of the speakers.

Disclosure on a public platform has required a different type of bravery. Living with HIV and navigating the fear, the stigma and the perpetual challenges on a daily basis have been one thing; sharing my story with others and letting them into my world has been quite another.

I am slowly discovering the powerful impact that a narrative can have over one’s life. Telling my story, relating to different aspects of my experience and allowing my narrative the space to be heard are all emancipatory acts. Not only do they potentially educate others, spread awareness and assist with reducing stigma, they free me in ways that I could never have imagined before embarking upon the Speaker Tour.

I’m just starting to learn how big my brave is.

Find out more about the Youth Stop AIDS Speaker Tour and sign up to an event near you.


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Disclosure, activism and getting on with living

by wearerestless Reading time: 4 min