They talk HIV, they dream HIV, they breathe HIV… and it’s not all mint fresh.
A new breed is marching the streets of the CD4 town: the self-instigated benefactors of this world. They are good-doers who plan to right the wrongs of this Earth. Or are they?
There are many types of people living with HIV: those who don’t talk about it, those who talk about it to friends and family, those who talk about it anonymously and those who SHOUT IT FROM THE ROOFTOPS. And yes, caps were redundant in this last bit.
Now, I’m torn. I’m not stupid enough not to realise the irony contained in this piece. After all, I do publish on a website with a dotcom address. Like, you could almost believe this is serious sh*t. And don’t get me wrong; people who do put themselves out there (usually) play a very important role in HIV prevention and fighting stigma. Some are doctors, long-term sufferers or newly diagnosed, people with ideas and convictions; people who speak out to help others, not to gain a few extra followers.
“I’m important, you see.” “No you’re not.” “Yes, I AM.”
At best, what you do might be useful, but stop blurring the line between the actions and the person behind them.
So, every now and then, there’s the odd « I HAVE HIV » badge carrier, whose life seems to revolve around the fact that, once upon a time, they had sex (usually) and something went wrong.
I wrote it before; HIV defines me, in parts. I believe that. It changed me (actually, for the better). But I don’t carry it on my shoulders…or wear on my sleeve. I don’t even wear my THT t-shirts out and about. The reason is simple: I don’t want to be judged, either way.
If I came out positive, many people would think “good on you for being open about it.” (The few of my friends who have been told seem to fit that bill.) Many others would think “don’t come anywhere near me.” Challenging those is fine and can still be done from a neutral perspective. If anything, challenging stigma without disclosing my status makes me appear less biased, by definition.
I see the two sides of that coin but I don’t need to flip it. I don’t need the attention. I don’t need the blame.
I’m happy to blog about the condition, once in a blue moon. People can voice their opinions here or on social media, I can reply to them, without the need to get recognition for it. Most people living and writing about HIV feel the same. They share an experience, under a pen or their real name, with their latest photo or a funky avatar. They do not crave for more.
Some others, however, seem to confuse being infected by a disease with having done something noteworthy: the Paris Hiltons of the medical world, hooked on their status (pun intended).
Like a scar they’re proud to show, a tattoo they can never remove, they parade their HIV status. Sensibly and subtly enough, they don’t glamorise the condition, they know that would be wrong (read: frowned upon); but one might be tempted to think they enjoy the attention they get from it. The attention they didn’t have to work for: win-win!
Their lives might, consequently, become HIV centred. And by doing so, they’ll receive more reactions to their status. Which they will see as a sign that both stigma and support are out there and needs to be, respectively, fought and fostered. Vicious circle.
When doing some good is not good enough.
Does it have to be a bad thing?
They put it out there, in the open, that’s true; and that’s all well. But they might also take the limelight away from those who needs it more: associations, charities, support groups, …
They will fill up your timelines with irrelevant (and often self-righteous) dribble, 24/7, drowning away in white noise the useful posts of reputable sources.
They will pick people’s brains when it serves their purpose and belittle them when they don’t.
They will inundate these reputable charities or activists with self-promoting messages, wasting their precious time in the process.
They will gloat about how much they do for the fight against HIV, but would they even give away some of their time or money if it was keep a secret?
Last but not least, they won’t even notice how detrimental their “good work” may sometimes be, for all these reasons.
“Do good by stealth, and blush to find it fame.” ― Alexander Pope
A friend of mine can’t help himself but to tell us all when he gives money to charity, or volunteers for something, or helps a lady cross the street. Was it a selfless act, or one done to be told later and shine from it? Maybe both. On the bright side, at least, he does some good and that’s probably better than most. But then again…
If no one asked you to do something, don’t get upset when no one thanks you for doing it.
Same goes with the egos of HIV. All in all, it could be fairly anecdotal. It probably is. They have their moments, when they actually do step away from the mirror and benefit to the bigger picture, maybe raising awareness or money. For that, they should be commended.
But they always fall back to their bad habits, eager to tell the world about all the good they did. And they pin down if nobody’s listening, and they shout, and cry, and offer drama on slow news days.
They will sulk in the corner, even, if they don’t get the recognition they feel they deserve. Why, I don’t know. Good deeds should be selfless, to be truly good.
When their need for recognition, fame, being liked and loved -and an additional line on their CV- eat away the precious time, space and money that people are willing to give to STI prevention charities, I despair.
I despair and they don’t. They won’t. Because -they will happily tell you- they’re doing the world a favour; oblivious to the fact that the biggest favour they could do to the world would be to shine the light back onto those now living in their shadows, not their attention-hungry eyes.