My diagnosis came as a shock.
I’d gone to hospital about a month earlier feeling weak and with strange swellings under my neck and armpits. But they told me that I was wasting their limited time over the Christmas period, and simply had flu during a flu epidemic.
It was January 1991 when doctors eventually told me I was HIV positive.
Then 29, I left the clinic in a daze and wandered through London’s streets, feeling disorientated and confused. My understanding of HIV at the time was that it was a death sentence.
But despite the seriousness of it all, and being given 10 years to live, I was determined to lead my own life and look after my health.
Being the early 90s, I was glued to the TV when anything HIV/AIDS-related came on.
When my sister came to stay, she noticed and asked me why I was so interested, as if I had HIV myself. I replied ‘what if I did?’ She was shocked but immediately supportive.
That started the first conversation and although it took me much longer to tell the rest of my family, those that I have since shared my status with have listened, treated me just as always and been supportive.
Coming from an amazing mother of 10, I knew I wanted to be a mother one day. I had been with a new partner since 1997 – who knew I was HIV positive – and when we were told that our son was on the way, we were thrilled. Back then, doctors pressured mothers living with HIV into having C-sections, as this was the protocol to reduce the risk of transmission of HIV from mother to baby.
I was determined to have a natural birth so I trusted my intuition and gave birth to my first child naturally in hospital, with the support of my family and a midwife, in 1998. I’m not a religious person but losing my mum to cancer in 1981 brought me a greater sense of the meaning of life and death.
When the HIV negative status of my baby was confirmed, that feeling of vitality that seemed to have gone missing after that loss returned. I was back in the game.
Since becoming a mother, I’ve met a lot of other women living with HIV who are mothers or want to embark on their own pregnancy journey. I made a lot of connections through a support group called Positively Women, now known as Positively UK.
After initially being a volunteer, I received a qualification in 2012 to become a Peer Mentor and I now work as part of the Antenatal Clinical Care team as a Peer Navigator at Homerton Hospital, where I have been since 2013.
Part of the joy of working in this role is that it allows me to support pregnant women who are living with HIV and help them navigate this journey.
Even though it is possible for a woman living with HIV to give birth to a HIV negative child, passing the virus to their unborn child is still a concern for many women I work with. I also help women understand their options for breastfeeding and ensuring the confidentiality of their HIV status is maintained.
We all have different stories when it comes to looking after our health and wellbeing while living with HIV, and the peer support available can be a real lifeline.
It’s incredible to meet women going through their HIV journey, asking pivotal, life questions, and peer groups literally save lives – especially when it comes to the support they provide to peoples’ mental and emotional health and for people to know they are not alone.
Today, it’s no longer a case of just staying alive as it was in the early days of the HIV/AIDS epidemic. New initiatives, such as the Find Your Four campaign from Gilead Sciences, help with practical support and through discussions with the HIV healthcare team.
In my own life, I’ve discovered ways to look after myself and find peace, as I decided that HIV would not be a barrier for me to live well. But it’s different for everyone and there is no one way to get there. I’ve found you just have to be open to the experience of living with HIV, whatever that looks like for you.
One in three people living with HIV in the UK are women, yet women are barely visible in the narrative of HIV, such as in media and TV dramas.
The intersection of being Black and a woman further removes me from much of the mainstream coverage of HIV. But Black women with this virus also have questions – we need space in the conversation and the ability to raise our voices.
All women need consistent advocacy in HIV – we wouldn’t have the support and services we have today without the determined voices and efforts of women living with HIV, which is why I’m sharing my story.
There is a lot of support and good resources out there but we need to go further in reducing stigma and raising awareness of how to live well with HIV. Things have massively improved but many people still avoid attending healthcare appointments due to fear of discrimination.
There’s increasing awareness in society of those with HIV reaching the status ‘Undetectable equals Untransmissible’ (U=U) – meaning that while I am HIV positive, I can’t pass the virus on because I’m on effective treatment, as advised by my healthcare team. But there is more we can all do.
If you know someone who is living with HIV, or your community is disproportionately affected by HIV, you can be part of the solution. Just by knowing more about HIV and being able to talk about it will go a long way to help break down the taboo.
As a mother of two children, I’ve learned a lot about myself and how to live well with HIV over the years, particularly from speaking to other women with it too.
I talk to my children about my HIV and believe that educating others and building a better understanding of HIV is one of the most important ways we can overcome the stigma that still exists.
I’m now a youthful 60-year-old, and my life expectancy is the same as anyone else’s. Living well with HIV is all about doing what feels good for you.
I like to practice yoga, dance and cook nutritious meals from scratch. We all deserve to live well with HIV, and defining how to look after your health and wellbeing is where it all starts.
Your Daily Horoscope
Janine has worked with people living with HIV for over 20 years and is a contributor to the Find Your Four campaign.
Do you have a story you’d like to share? Get in touch by emailing platform@metro.co.uk.
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