blog 240429 hivinmybedroom

Today we celebrate and honor the lives of all women living with HIV with our friends and supporters at this annual National Day of Women living with HIV! with our theme today – Yes Women get HIV TOO!

For those of you who don’t know me. I’m Frances, I’m a 65 year-old heterosexual woman and I’ve been living with HIV for 20 years. And I’m embracing my positive life.

As a single mum I raised three daughters, now 45, 44 and 30 and I have seven grandchildren. I’m on the Board of Positive Life NSW. I’m a peer support for women living with HIV in the Hunter-New England region based in Newcastle, NSW. I’m a beauty therapist of 25 years, a nurse before children, a business owner, and operator of a home beauty salon in Cooks Hill, Newcastle. My number one theme song of all time is Helen Reddys’...I am Women. I am strong, I am invincible!

In 2004 at 45 years of age, I was diagnosed with HIV….

My world as I knew it stopped as I heard the words, you have tested positive for HIV…

You know, I NEVER expected a HIV diagnosis.

1 it could never happen to me
2 how could I be at risk for HIV?
3 and certainly not in my backyard!

Yes, today, I’m here to tell you – all of you wonderful women that women get HIV too. This my story.

At 45 I was living my absolute best life. A single mum, out on the town with my girlfriends, partying, dancing, drinking and having great sex! What’s not to love about your naughty 40s!

I was in my prime. Yes and looking back grinning, I was always going to be that girl dancing on the bar at The Star hotel in my late teens (if my knees hold out!) that is. My girlfriends always laughing, called me the condom queen, always handing condoms out at the end of night as they exited with a potential.

So, how did this happen to me? Well..! I met this exotic looking guy on the dance floor at The Exchange, the local ‘it’ Hotel in Newcastle. End of night, back to my place.

I had the responsible sex and condom conversation before sex. Raising three daughters, it was always an open discussion! We all practised safe sex with regular testing.

I told him I’d had my STI testing recently. Including an HIV test. ALL NEGATIVE! He assured me he had too, so all good to go. Then a month later he rang to tell me I needed to get tested for HIV.

I was stunned and speechless.

WHAT!! WHAT THE…

WHAT do you mean?

We had had the conversation…We’d even mentioned HIV. WHAT?

He told me he had tested positive for HIV and admitted to being notified several times earlier that he was a contact of someone diagnosed with HIV. Again WHAT THE??

It wasn’t the only lie he told me. I thought I was in a monogamous relationship. I found out he was much more sexually active. There were other women and men. Needless to say that was the end of our short six month relationship!

I felt sick, numb, shocked and scared, filled with disbelief, fearful and apprehensive. How could this happen to me? HIV…isn’t that a gay man thing? or men who have sex with men? I’d never heard of, or knew of another woman with HIV or any men, for that matter, where I lived.

I felt scared and apprehensive about my future. I worked in a skin penetration area of beauty, and I remember thinking thank God I had had my children! I thought I’d never be able to have a sexual relationship with a man again. I felt my freedom of choice had just been taken away from me.

The three people I confided in at the time then betrayed my confidence, outed me, shattering my employment, family and social worlds. I was yet to know my rights.

I was so alone in the HIV world…Scared, I hid in isolation, me and HIV. The threats, stigma, discrimination and rejection all hidden away. Small country towns can be brutal.

I was fortunate to be diagnosed early in 2004 and I started treatment in 2008. Sure, the medications were a little rough back then. They’re amazing now. Sticking to my medication, and taking it as prescribed has been my key to living a healthy, positive life with HIV.

Today, I CAN’T transmit HIV to a sexual partner.

In case, I need to say it again. Thanks to medication, I CANNOT give HIV to anyone else, no matter how much sex I have.

For 10 years I lived hidden in fear, till I couldn’t any longer. I had the classic teary meltdown, probably more like a volcanic eruption! stirred with a dash of perimenopause, with my Immunologist and it ALL came crashing down.

He directed me straight to the Social Worker, thank you, which coincided with a Positive Heterosexual Retreat. It was the first time I had met or knew of another woman that was HIV positive! I thought I was alone. I cried the entire weekend. A release and relief…..And then came the realisation – I was not alone! This was life changing for me.

Then I met Jane Costello, the now CEO of Positive Life NSW, who gave a talk to a small group of regional positive women and the rest is me standing here today. You Jane, and Positive Life opened my life to the endless possibilities of living positive, while being positive. The friendships I’ve made are fulfilling. rewarding and life lasting. The knowledge I’ve gained is powerful.

The encouragement, significant and meaningful. The encouragement to come out of hiding to be a strong advocate for women living with HIV to be acknowledged, seen and heard. Thank you! I’d like to acknowledge the tireless work of Positive Life NSW. From the CEO Jane Costello, to my colleagues and friends on the Board, the staff and volunteers, you significantly enrich my life.

It was exciting to hear our messaging of inclusion for all on national television the other night where we featured prominently in the Sydney Mardi Gras Parade with commentary by Courtney Act. As a positive woman I felt valued, significant and heard.

HIV awareness is extremely low among women in Australia. Women have a false sense of security about HIV. Today, sadly we have a slowly rising number of women diagnosed late with HIV.

Women who have lived with HIV for many years without knowing it. Being told by health professionals we don’t fit the demographic.

Positive people come in all different shapes and colours, AND we are united by our shared experience of living with HIV. While our stories differ, we share common themes of diagnosis, trauma, rejection, and stigma.

On this National Day of Women Living with HIV, I want to acknowledge our unique challenges as women living with HIV. I want my friends, supporters and allies to know about the stigma and barriers we women living with HIV face in Australia.

On this day, I want to call for more equality in healthcare. We MUST reduce the barriers to appropriate testing and treatment for women. Together, we MUST make HIV-related stigma in our communities a thing of the past.

Most importantly, today, together let’s celebrate our courage, our resilience, and our achievements as women, whether we live with HIV or not.

Let today be the day, that together we highlight the need for all women, especially those of us who are sexually active, to include an HIV test in your regular health check-ups!

If the test turns out negative – that’s fabulous.. Keep testing. If the test turns out positive – start medication as soon as possible and yes – life will go on!

It’s time all of us knew our HIV status. Not a guess Not a hope Not a probably.

HIV did happen to me. And to many of us in this room today. I never thought HIV could happen to me. I never thought I was at risk of HIV and I certainly never thought HIV was in my backyard!…. And certainly not in my bedroom!

I’m Frances, I’m a Mum, a Sister, I’m a Granny, a beauty therapist and business owner. I’m a Board Director…and a healthy happy woman living with HIV.

I’m living my best life.
Thank you.

Delivered as a speech by Frances Parker on 9 March 2024, at the 2024 National Day of Women living with HIV in Sydney, NSW.

– Frances

Published in Talkabout #208 March 2024

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