1st December is World AIDS Day, and it is a day to remember those that have lost the battle to AIDS complications and to commemorate the people living with or affected by HIV. But what does it mean to be a woman in all of this? Globally 52% of people living with HIV are women but, in the UK, we make up a third of all people living with HIV. Despite this number of women living with HIV, when it comes to delivering services, research and decision making, we are not a part of this process. Also, out of these women over half have experienced domestic violence related to their HIV status.
I was diagnosed 15 years ago after a routine sexual health screening. I asked how long do you think I have had HIV, and the answer was longer than 6 months but no longer than 5 years. I was so lucky to be diagnosed when I was because if I had continued with no test then my outcome would have been different today. Late diagnosis in the UK is still a key issue and in 2017 43% of diagnosis happened at a late stage of infection.
Never in my life did I think that something like this would happen to me, and I think that a lot of people think like that too.
Body Positive Dorset was my saving grace, I was referred to the charity when first diagnosed and despite being very scared, I dared to walk through the door and not look back.
It was the best thing that I ever did and would recommend that no matter what your condition or situation being with your peers is the best learning curve ever. When I walked in, I am not sure what I was expecting but it was just a place with people in it. They did not look any different they were all different ages etc but as soon as you walk through that door you realise you have become a part of something that is bigger than you think.
I suppose I thought that when I got diagnosed that people would be able to see and that I would look different to people not living with HIV. These people did not look any different either and it dawned on me that actually there was no invisible sign that showed we were HIV Positive.
I was lucky enough to at the time have a support worker that thought that despite how well things were going at Body Positive Dorset there were not many other women to talk to. She found a support group called Poz Fem. I arrived in London after trying not to get on the train and thinking of the ways I could get out of this commitment, (I was diagnosed with Generalised Anxiety Disorder not long after my HIV diagnosis) and my was anxiety going through the roof. I walked into a room that was full of just women, a room of women all living with HIV. I cannot explain enough what a light bulb changing moment that was for me. The weekend flew by, and we all quickly became friends and have grown to become family. The idea of the weekend was to empower women living with HIV and boy did it do that. We all made a promise of what we were going to do different when we got home. My thing that I decided was to be honest online about my HIV status and my goal was to become the manager of where I work now. Goal set and scored, I am now the manager, and I did what I said and came out on Facebook, as what better place to come out as living with HIV lol.
What did I really learn from that weekend apart from coming away empowered and feeling not ashamed. When I was diagnosed with HIV, I will be honest my first thought was that I was going to die, how would I tell my children, how would I tell my mum and dad that I was going to die probably before them. I contemplated lots of things, looked online for conditions that might be similar that I could say I had rather than HIV, it felt so shameful and dirty. I felt like that for what seemed like forever and the anxiety disorder was able to reap even more damage, an eating disorder then developed I lost the ability to even write, my dressing gown was my cloak of safety inside my home.
That weekend changed all of that, I won’t say it changed over night because as we all know change is ever evolving and if it all happens too quick, it has more chance of failing. So slowly slowly with small steps the days got better, I got better, and I grew into the person I am today.
That group of women made me realise that an HIV diagnosis does not define me it is in fact just a small part of who I am.
Since that weekend I am still learning, and I do not think that will ever stop. I have experienced domestic violence based on my status and have experienced stigma and discrimination however as I mentioned earlier, I am the manager of where I also am a service user.
I cannot say loud enough how important the correct support is and we may all need to access it at different parts in our journeys. The power of peers, there is nothing like it. Do not view it as putting yourself into a box or labelling yourself it just helps. These people’s journeys may be different but be able to share stories, discuss how it feels to be judged but more importantly that instant empathy. With no words they just get it.
This World AIDS Day, I will remember my friends that I have lost to the battle of HIV/AIDS and also celebrate with my peers, my fellow warriors that are living their best lives possible.
HIV does not define me, I am Samantha Dawson, human not perfect.