I’ve woken up to a cloudy, pretty miserable November morning in Salford but I’m feeling upbeat and motivated for the day ahead.
This time six years ago the exact opposite was true. As I left my flat back in 2009 it was chilly but the sun was shining as I walked to the bus. I was anxious and worried with a knot in my stomach. I woke up that morning not knowing my status and went to bed anything but positive, but knowing I had been infected with HIV.
I’ve been thinking this week about why I am in a much better place to those early days, the first few weeks where my head was up my arse and I didn’t know my left from right. Six years, six thoughts…
Sort your own head out (And answer your own questions before you try and handle those from other people).
Seems simple but how do you expect to manage the inevitable questions from other people if you can’t answer them yourself? I’m not talking about the science and virology of HIV that you can spend time researching. I mean those deep and meaningful demands, when the anxieties can creep in, the moments of doubt as well as those moments you’re overly sure of yourself.
Get over yourself if someone asks you how you became infected; people are nosey, thirsty for knowledge and they’re scared. You wouldn’t bat an eyelid if someone asked you how you broke your leg if they saw it in a cast. Why is this different, why are you making this different? They want to know the details, maybe some want to gossip but there are a few who will be concerned about you – or their own health.
As a community we create a paradox. We stand up and scream that people need to be educated about HIV - then sit down in silence hiding the personal stories – and it’s the individuals that society actually takes note of, more powerful than a campaign, no matter how much money you have to throw at them. Why act as if you have done something to be ashamed of, why pressure yourself with that internal stigma on top of what you’ll already experience from the communities around you.
Build your [support] network
I love being right, I love my independence and I enjoy succeeding without the help of other people. I suppose I always used to see “support” as a weakness. But there are times where you can’t handle the situation on your own – and that’s being human.
I’ve learnt with my status that it is OK to speak to other people, to discuss your concerns and question whether what you’re doing is right. If your family and friends really love you they’ll be there for you – if you doubt they do then why waste your energy on them.
Being able to speak to other people living with HIV has been invaluable to me, it’s more important and been far more useful than the countless blood tests and consultant appointments for my counts. Let experiences dictate your life, not numbers.
I still get a rush when I meet new positive people, I’ve an extrovert personality so I’ll always thrive off the energy from others but being able to share experiences with people from across the UK and beyond has been core to why I am comfortable with who I am – and it also reminds me why we still need to keep fighting.
Use your voice - the power of visibility
Today I have lived half my positive life openly, without shame and guilt. I’ve taken control. I am sure people still talk behind my back, gossip about me but I know the actual, factual information is out there, I don’t regret being an open book when it comes to my status.
We can’t kid ourselves that one day the bigots and fascists will wake up and think “you know what, today I’m going to let go of the prejudices I cling onto about HIV positive people, I’m going to give those guys a break…”. Social change has never come about thanks to no action being taken. Hard work has made it happen and it’s down to people putting themselves out there, in their communities. Invisibility and silence around HIV is as damaging as the voices of people who think we are dirty, shameful or full of sin.
And there’s something personal to gain from being so vocal, unleashing everything that had been bottling up inside you, it’s ridiculously empowering to feel so free.
Be yourself (you are more than a diagnosis)
Things I realised very, very early on:
I refused to ritualise my behaviour. I take my medication when I am supposed to but I don’t beat myself up when I miss a dose by a an hour, or forget to take one of my pills once in a blue moon. I’m not putting my life on hold every twenty-four hours to facilitate a medicinal ceremony.
I didn’t get prissy about other people’s HIV status. Love yourself and other people will too. The only thing you have in common with other people living with HIV is the virus inside you – why limit yourself?
Don’t put limits on yourself - live your dreams
This has been my fight and my own journey; I’ve not let anyone else tell me that I can’t achieve anything I want because I am living with HIV. HIV is just a virus; don’t let it shackle you to a life you don’t deserve.
Apply for that dream job, book the once in a lifetime holiday, ask that guy or girl out on a date. What have you got to lose?
That instant recoil from the world doesn’t have to last forever, it will all get better in time as cliché as that sounds.
Celebrate. You are LIVING with HIV
It’s 2015. I’m really lucky, I live in the UK with this disease – I’m on medication which is suppressing the virus, and has been for almost all the six years I’ve been HIV-positive. I’ve loads of fantastic friends and a supportive family. I’ve an amazing boyfriend. Why shouldn’t I celebrate this yearly milestone? It’s certainly not something to be sad about.
Today I’m eating cake, I’m going to have a drink tonight and I’m off to the cinema with my boyfriend this evening.
Your diagnosis can pull you down or you can manipulate it for your own benefit. HIV can push you to your limits, but use the virus and don’t let it use you. Let HIV give you confidence, strength and determination.
For me today isn’t about putting the middle finger up to HIV, it’s a thank you. You made me who I am today!
This article first appeared in Alex’s own blog HIV & Me here.