Daniel Töth, the proudly self-titled Queen of HIV, talks here about the impact of the stigma surrounding HIV, the need for greater public awareness of the U=U message and the trauma carried by a community who for so long lived in the shadow of HIV and AIDS.
On the continued stigma surrounding HIV
Your working assumption, whenever you deal with HIV, is that it’s an issue, it’s a thing, it’s dirty, you don’t talk about it. Once you come out with HIV, you may find a lot of understanding, but the assumption is that it’s always a problematic thing.
I was chatting to someone who was in their early 20’s, and they were saying that their age-peers had practically zero education about STIs and safe sex in school. If you couple that with the high incidence of HIV, these people who don’t know anything will just fill in the blanks with their own prejudices or assumptions. If you don’t even have proper sex ed, how do you battle stigma?
On the necessity of raising public awareness
It’s all about public communication. Why is there a stigma? Because we had tombstone adverts in the ‘80s which told us – ‘If you get AIDS, you’re going to die’ which maybe was true at the time, and the adverts were very effective, it’s just happened to have the side effect that, these days when HIV is not a death sentence, those sentiments still linger.
The only thing to reverse the ills of a bad legacy of a public communications campaign is a new public communications campaign. Back then we had massive ads saying ‘AIDS kills’, now why can’t we have massive ads saying ‘Undetectable Equals Untransmittable’? It seems not to be the priority of health ministries around the world, so it’s left to grassroots campaigns, like ACT UP, to get the word out there somehow.
On the impact HIV has on a person’s self-esteem
I was applying for a temporary gym membership. Whenever I’ve had to fill out any forms, there’s always that question – ‘do you have any chronic illnesses?’
All the time, I’m tempted to just say, ‘no, no problems’, because it isn’t really a problem. But I fill those forms in just to A) make it visible and B) to see what happens. In this case, they asked a lot of questions like ‘when were you diagnosed, what effect does this have on you’ and I had to sign a form to declare that I am fit.
Throughout this process, even though I’m out about having HIV, I still felt uncomfortable. It’s in these sorts of instances that you still feel that you’re ‘other’, you’re part of some specific subgroup that is being seen differently.
On the impact of U=U
I was diagnosed when I was quite young. Back in those days, my self-perception was that I was somehow risky or toxic, that my affection for others was literally poisonous. These things have an impact on you, especially if you’re already predisposed to having low self-esteem or poor self-image. What this also meant was that I was unable to have any of the sex or the physical affection that I felt everyone around me was having. U=U really helped me throw all that off.
(U=U or Undetectable Equals Untransmittable – when a person with HIV has a viral load that is not detectable, they cannot pass on HIV through sex.)
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On the traumatic impact of HIV
The trauma that all these men who have sex with men have lived with for their lives is still very much there and shapes their mental health.
I think this is particularly relevant with men who have been around since the ‘80s and survived AIDS. How do they perceive U=U now that they’ve lived through decades of this internalised shame versus someone who got diagnosed in the last three, four years, when they never had to live with this notion that they are risky?
Some might say, ‘You have U=U and PrEP, what more do you want?’ But there is the mental trauma of all those men who have lived with HIV and the possible mental trauma of those men who are being infected in Ireland at a disproportionate rate to think of.
I think it’s very important to keep in mind that the stigma still exists, that these people will still have issues; they’ll probably be depressed, they’ll probably feel isolated. None of that will be helped by U=U, it won’t be helped by drugs, it will be helped by talking about it.
This story originally appeared in GCN’s October 2019 issue. Read the full issue here.
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