By Bakita Kasadha
Originally performed by Shalifa Kaddu
Dedicated to women HIV activists globally who have fought to keep women living with HIV included, supported and safer.
Around a third of people living with HIV in the UK are women, and a quarter of all new HIV diagnoses are in women. However there is little attention to women’s specific needs and experiences in HIV research, policy and programming. The ‘Women and HIV: Invisible No Longer’ project aims to change that, by gaining a better understanding of the experiences for women and girls in the UK living with or vulnerable to acquiring HIV. There are two participation studies for women living with HIV and women who are not, to understand different perspectives. For more information, or to take part in the survey visit http://www.tht.org.uk/get-involved/Campaign/Our-campaigns/Women-and-HIV-Invisible-No-Longer
“How did you get it?”
Every story has a beginning, middle and an end. And I often find myself being anchored at the beginning. Or at least anchored to what people assume to be my beginning. Tied by their inquisitive minds, with a misplaced focus.
Let me just be frank – pulled back by nosey people. Reduced to one moment. They say that you are the sum of your experiences, but it seems that I am seen by just one.
“How did you get it?”
Tie me to one and I can’t tell you how much courage it took for me to confide in you.
Tie me to one and I can’t tell you the new sense for life I now have. I am grateful for life and grateful to live in a way that I never was before.
Tie me to one and I can’t tell you the sisterhood I have found since finding out.
A sisterhood that has taught me what it means to be a woman, what it means to be a whole person. That I have the right to say yes, that I have a right to say no. Yes to messy, fun, exciting sex. No to stale, unsatisfying, more heavy breathing than effort sex.
I am the sum of my experiences. I am the experiences that I have not even had yet. It’s time to talk pleasure beyond and between the sheets. Yes… inquisitive mind, we do still have sex.
I feel joy, empowerment and relief in knowing that I’m living at a time where medicine means that my future children will be HIV free, that my medicine means that I can’t pass anything on during sex. That I will live to a normal life expectancy, but I really hope my life is anything but “normal”.
The frustration, the solid frustration comes in knowing that so many, too many, just don’t know this. Don’t know what living with HIV is for a woman in Britain today.
It’s checking my phone as soon as I wake up
It’s wetting my toothbrush, before I put the toothpaste on it (some women living with HIV might do this the other way round though)
It’s taking one tablet with my breakfast
It’s wishing away the hours at work, because today is a Friday
It’s putting my Fenty makeup on and wondering if I’ve overdone it with the eyeliner
It’s remembering that you can never overdo it with the eyeliner
It’s wondering if I’ll see him tonight
It’s pre-drinks with my friends at the bar, before we go to the gig
It’s thinking “shit” as we realise last entry is only 30minutes from now
It’s waiting for the night bus home
It’s being so knackered that I don’t bother to brush my teeth, knowing that I’m gonna have that funky taste in my mouth tomorrow morning
It’s getting a “good night and hope you got home safe text”, with two kisses, from him. Must be because of my infectious… personality
It’s leaving my phone under my pillow so that I can check it as soon as wake up
It’s knowing that I am at the middle of my journey. It’s knowing that I am not just someone’s friend, daughter, a health diagnosis, that I am someone. A whole person. It’s knowing that I will not have others define my value. That I will not justify why I deserve your humanity or your respect.
It’s knowing that my beginning is none of your God-damn business, but as I go through this middle and new beginnings, I may allow you to come along for the ride. It’s knowing that it’s taken me a long time to reach this point. Through pain, rejection, fear and anger. Through loss and confusion. Through hopelessness. I have reached it because of the support I have had during the journey. Now, I have a strength that I never had before. I have an appreciation for life that I didn’t have before. I have a sense of belonging that I didn’t have before. I have a sisterhood, I have support.
We do exist, don’t forget us. Some of us have travelled thousands of miles to be here and provide your healthcare. Some of us were born right here. Some of us you have denied womanhood, but we persist. We have been the ones to deliver your babies. We have sat next to you whilst you made AIDS jokes unknowingly at school. We have held our screams in. We will not beg for your humanity, I will not.
One time I was with a potential romantic candidate, who is no more. I didn’t kill him, we just no longer keep in touch. At the time, he had ticked most of the boxes on the personal spec: fine, funny, family-orientated. One evening I told him, “well how did you get it” he sneered in that predictable, but unfortunate way.
It’s funny… sorta. One time, before he knew, he had insisted that we not use the condoms that I had brought. He had brought none. I wonder if he ever saw the irony. But I insisted - I had bought them because I intended to use them. Not for his protection, for mine. That probably was a flag that I should’ve paid more attention to at the time. I will be more aware in the future.
I have no idea what’s coming after this point, what life has in store. Hopefully the boring bits won’t be for too long, hopefully I will be able to overcome the stresses and sadness that life will unexpectedly throw.
One thing I don’t stress about: my health. At least not my health specifically to do with HIV. There’s a freedom in that.
I went on a date with Mr. Text Guy. As three is the magic number, in many ways, I told him about my status on the third date. We’ve been on five more dates since then. He’s irritating in a really irritatingly enjoyable way. He keeps telling me that I should find a job that I don’t wish the hours away in.
Towards the end of the journey, maybe I’ll be surrounded by children and grandchildren, maybe not. Maybe I’ll be 30+years married to Mr. Text Guy, maybe not. One thing I do know: my eye-liner will still be popping.