It goes to show that you can't tell by looking at a person whether or not they have HIV. We who live with HIV are your neighbours, your friends and lovers, your parents and children. We could be standing next to you in the check out line. We could be your lawyer or teacher. We could be you. We are you, because you live with HIV too. There will be someone who touches your life, in some way, who is living with HIV infection - whether you know it or not.
We might not choose to share our HIV status with you. Many of us are afraid to share and with good reason. We never, ever know how someone is going to treat us until after we've told them. If a person reacts badly, we have to live with the consequences. We cannot UN-tell.
There are many people who believe they have a right to know our status so they can “take precautions”, such as not shaking hands or sharing our company. Others believe they have a right to know so they can inform anyone they believe to our sexual partner – potential or otherwise. They want to know so they can point and whisper. Some like to host pity parties. It’s not pleasant to be on the receiving end of any of this and sometimes it’s downright dangerous.
When I was first diagnosed, I feared petrol bombs through the letterbox in my front door. I was diagnosed as part of a “cluster” of infections and within a week, the Rag of the Rock saw fit to publish a juicy story with all but our names and addresses. They named our town, on an island of 70,000 souls. As an old Manx saying goes: “If you sneeze in Ramsey one minute, they know in Peel the next”. I lived a nightmare of fear for months.
I had to tell my thirteen year old daughter, when I’d barely digested the information myself. I had no idea who knew about me, but I did know our cluster was being talked about by everyone - whether they knew our identities or not. Some of us were coping with alcohol and crying in the pub, adding fuel to the rumour mill. I knew there was a very real possibility another child would tell my daughter, after hearing from parents, that I – her mum - had HIV. I wanted the news to come from me, not a spotty-faced, leering teen, so I had to act fast when I wanted to bide my time. The Rag of the Rock forced my hand.
Vicious teenagers and petrol bombs were my darkest fears. Time went by – and nothing happened. No bullies at school, no bombs in the post. I was astonished and encouraged. I slowly stopped feeling like I had HIV tattooed on my forehead. My daughter took the news in her stride and met my doctor. It didn’t stop her from being an ordinary teenager, alternating between tantrums and hugs, and she’s grown into a lovely young woman who I am proud to call daughter and friend.
I’m lucky. For me, the horrible visions of persecution never materialised. I’ve experienced some negative reactions - nothing life-altering - but I know people who are damned to hell by loved ones and others who have been edged out of jobs, homes and lives. I know people who are so deep within the HIV closet they don’t even dare access the internet. I know people who are barely treading water in a sea of fear.
And I know there but for the grace of the universe go I.
I also know it’s a vicious cycle. Our hiding adds to our own stigma and that is perhaps the most bitter pill of all. We hide because we have to and we have to because we hide. But as we step out of the closet and into the light, people see us for who we really are. We are neighbours, friends and lovers, parents and children. We could be you. Only when people truly understand this will we be free of stigma.
When we are free of the stigma, we will be free of the fear.
And YES, it is scary out here, but I’m feeling the fear and doing it anyway. The more I look that fear right in the eyes, the faster it melts away. I know not everyone can join me - but I'll be here waiting for you.