MANY PEOPLE DON’T come out about their HIV status, and I don’t blame them, I can totally relate to that. Only about one percent are living openly about it but I think the biggest mistake that I made following my change of status was that I became really isolated by keeping it a secret.
There can be a lot of internalised shame experienced by people living with HIV, which often comes from the fear of stigma, rejection or discrimination and of letting people down, “bringing shame on the family”. Stigma only happens when there are negative beliefs and misconceptions about HIV.
This can affect a person’s mental well-being, especially if they are at a vulnerable point in their HIV journey, such as coming to terms with their recent change of status. Studies* have also found that there are higher rates of developing some mental health conditions, such as depression, anxiety and post-traumatic stress disorder, among people living with HIV compared to the general population.
Fear and stigma also impact people coming forward for testing or accessing the treatment. Last year, nearly two in five people (39%) of first-time HIV diagnoses were diagnosed late, which research shows is often related to fear of stigma and fear of diagnosis. We really need to change that story. The sooner a person knows their HIV status, the sooner they can begin their treatment. I want to shout it from the rooftops, how far HIV medication has come on in recent years, it’s amazing, much better than what it was. I take a single pill a day.
It took me almost ten years to come to terms with my own internalised HIV stigma. Being a queer teen in the 80s / 90s was traumatic, I had a lot of baggage to unpack. When I did decide to come out of the HIV closet and share my status, I wanted to make as big a splash as possible and really do the most. I set up the Poz Vibes – positive vibes – podcast with my friend and fellow HIV advocate Robbie Lawlor, to provide a platform for the voices of people living with HIV.
We put the emphasis on the H — the human — and we always bring the fun. It’s really grown from there and we have a great community now, we call ourselves the Poz Vibe Tribe, made up of HIVIPs, friends, allies and activists. Becoming an activist has refocused my career and has become my calling in life.
I think that most people now know that HIV can’t be passed on from using the same cups, plates, forks or toilet seats. You can’t get HIV from shaking someone’s hand or giving them a hug. But thanks to medical advances, people on effective treatment cannot pass HIV to sexual partners.
Undetectable is where a person’s viral load is so low that it is not detected in their blood, we would also call this U=U, or ‘undetectable’ equals ‘untransmittable.’ In a recent survey carried out by the HSE and Core Research, 71% of Irish people were unaware of these advances in treatment.
It is a scientific fact that once on effective treatment, we can’t pass HIV on. This also means that people living with HIV on effective treatment can also have healthy pregnancies and go on to deliver healthy babies who are born without HIV. This is why knowing your status is so important, it’s the key to accessing treatment which can help you live a healthy life like everyone else.
Myself, Robbie along with four other people; Aoife Commins, Pat Commins, Ainara Pedroso and Peter Thijs, have partnered with the HSE on our mission to bring about a positive change in Ireland for the HIV positive community. We have worked together with the HSE over the last year, and today we proudly present a new national public information campaign ‘You, Me & HIV.’
This campaign is featured across TV, streaming services, on buses and social media to reach as many people as possible to address the misconceptions and gaps of information out there that contribute to the HIV stigma. We want to let everyone know there is nothing shameful about living with HIV and nothing to fear by coming forward for your test or treatment.
It’s time to bring healing to the community, to honour our past and loved ones lost by ending HIV stigma and also ending HIV. At home testing, condoms, PREP, PEP and most importantly U = U are the tools we need on our mission to end HIV. Our biggest barrier is still HIV stigma, but I hope that this campaign will go some way towards addressing that. I think things are changing in Ireland for the better, and hopefully will continue to change. I feel honoured to be a part of that movement.
My advice to anyone who might be either coming to terms with a change in their HIV status, or struggling with stigma, is to listen to our podcast, Poz Vibe. It’s not a plug! But there is good advice and so many amazing stories, we have nearly 100 episodes.
People can hear from and learn from other people’s experiences and how we came to terms with living with HIV. Remember you are not alone in this, try not to isolate yourselves. Reach out, come out and hang out with us. Don’t be ashamed, don’t be afraid, don’t be alone, it’s unnecessary. You can also speak to your HIV care team or support organisation, help is there.
Enda McGrattan (Veda Lady) is an artist, activist and broadcaster. Learn more about HIV and the new campaign at HSE.ie/HIV. Listen to Poz Vibe podcaspozvibe.com.
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