While promoting his memoir Over The Top, Jonathan Van Ness publicly disclosed his HIV status.
A move that meant the disease instantly become the hot topic of conversation. Especially since former Wales international Gareth Thomas announced his HIV status the week before.
I vividly remember the day that my doctor told me that I had tested HIV positive, over 13 years ago.
The immediate sense of terror, regret, and – most of all – shame that washed over me was completely overwhelming.
At that point HIV was something that was not discussed much publicly at all and most still had no idea that it was treatable and no longer a death sentence.
The drugs were certainly not as advanced as they are today but I was told from the onset that my status would not have any impact on my life expectancy, so I should surround myself with people that love me and to treat myself right.
I wasn’t aware of how important those words would be.
I am so proud of Jonathan Van Ness for putting something so deeply personal out into the world but in some ways I am envious of the fact that celebrities get to ‘come out’ just once, after which everyone knows.
When I came out as gay, I found I could make it obvious by living as openly as I could and dropping hints about my friends, my partners and the bars I would frequent. It became part of my identity in a way I never felt I had to explain to anyone.
However, being open about my status is something I have to relive over and over again.
I have been defined by my illness and people are quick to make extreme assumptions about my life, my character, as well as how I must have contracted the disease
It’s been 13 years since I was diagnosed and while the disease hasn’t impacted me in any negative way – I’m fortunate enough to have had access to medications from the very beginning, and very quickly tested undetectable – it’s a conversation I’ve had to revisit.
I’m very lucky that I was living in San Francisco when I was diagnosed, surrounded by friends that had knowledge of the disease, but I was still shocked at the way that those even within my community turned on me.
I could no longer be ‘Joey’, but instead was seen as ‘The guy with HIV’. I couldn’t have predicted how the stigma and shame of the disease would impact the relationships that I already had. I still have moments now when I am taken back 13 years, completely terrified that I will be rejected by someone.
You find when establishing relationships that you are constantly needing to educate people who say foolish things. I’ve had many situations where people have completely freaked out on me over my status.
One instance I remember all too well was telling someone after we kissed, at which point he threw me into a wall because I was going to give him my ‘filth’.
Today I’m extremely content in who I am, though I still sometimes struggle with the complexities over when to discuss my status. First date? First hook-up? The first ‘I love you?’.
It would of course be easier to just not discuss my status at all. Undetectable equals untransmittable, so I don’t owe it to anyone to discuss my private matters.
I have been defined by my illness and people are quick to make extreme assumptions about my life, my character, as well as how I must have contracted the disease.
People assume I must have been irresponsible, must have slept around, must have been addicted to drugs. None of these things are true but my truth no longer matters to some, because all they see is my illness.
However, I feel that it’s important for me to be open because putting a face behind HIV helps with erasing the stigma.
I know that most of the people that I interact with will at the very least be open to learning more, even if it changes the way that they view me. This disease was not something that I deserved and I don’t need to forgive myself because I didn’t do anything wrong. It’s not something to be ashamed about.
It’s been a long journey, but I’ve certainly come a long way.
Thankfully, the world is making progress, too. Many people are much more educated on HIV and over the years I’ve found that most of the harsh comments or cruel words simply come from ignorance, not hate.
Jonathan and the guys from Queer Eye have done an incredible job of making those who might not encounter LGBTQ people in their daily life become more aware of the issues and interests in our community.
Jonathan is already educating people on his illness, spreading a message that they are living their fullest life.
For anyone coming to terms with their status, whether it is new or something you’ve been dealing with for some time, it is up to you to decide to handle how you – and if – to tell other people. Those who are positive have every right to keep that to themselves as long as they are being responsible.
If you want to speak out and help educate, then I applaud you for your courage. But whatever you decide, it will be the absolute right approach.
Ideally we would live in a world where no one would have to ‘come out’ about having HIV because there would already be a strong understanding of what this disease means.
Then we can finally get to a place where being HIV positive is not treated any differently from someone with another illness, which is with compassion and understanding.
