I was diagnosed with HIV when I was 27 after having condom-less sex. This once off, bad judgment call left me infected. From the outset, I was already under the effect of stigma associated with being HIV positive.
Firstly, it came from myself and my own judgements and then within hours of learning my diagnosis I was also exposed it by others including the phlebotomist who after reading the request form, looked me up and down with an expression of disgust while placing an ‘infectious’ sticker across my paperwork. I was shocked, confused and very upset.
Four years have passed since I was diagnosed and due to a regime of medication and health care my HIV status doesn’t impact my day to day life in terms of how I feel physically or health wise, but the stigma associated with the condition affects all areas of it.
From dating, work, seeking healthcare and everyday relationships with friends and family, my choice to tell or not tell someone is purely based on the requirement that they know, the support that I might need and the stigma I think I will receive because of my diagnosis.
Despite all of the developments that make the condition often completely manageable and for many, including myself, without actually posing a threat to anyone else because the viral count is so low that it is unable to be passed on, there is still a misconception about HIV in our society.
This lack of understanding comes from a scarcity of education about what HIV means now
This lack of understanding comes from a scarcity of education about what HIV means now. For many people, the only insight or way they learn anything about it is through Hollywood movies like ‘Dallas Buyers Club’ and ‘Philadelphia’, TV shows like 13 Reasons Why, or the ‘the Grim Reaper’ ads from the 1980s and 90s. But these depictions all show the outdated side to HIV and none of the new information or developments.
As a healthcare worker myself, the stigma is really difficult and frustrating to be aware of and unfortunately it exists within the healthcare industry itself.
I learnt this firsthand when I was hospitalised for appendicitis. Upon learning my HIV status, a nurse who had been happily treating me up until then, refused to. The choice to self-manage my own HIV treatment while in hospital was also delayed due to a similar incident during my stay.
You would think that this would have been the one place where people and their health would be taken care of, yet it was the one place where I have been discriminated against the most.
Despite experiences like this, there are many people in my life who are aware of my status.
Despite experiences like this, there are many people in my life who are aware of my status
The first few people that I told were my brother and his partner. They were super supportive, asked questions, did some research, asked people they knew about HIV, while not disclosing that I was positive.
It took me a bit of time to talk to some of my close friends about it. And when I did, I was usually teary being super nervous about how they would react.
While the majority of my family and friends are supportive, I have not received this same compassion from potential partners. Many have reacted really horribly or simply said they no longer want to see me based entirely on my status.
I have even been spat on after I told a man whom I had been on a few dates with, despite the fact that we had never been intimate or that I couldn’t infect him regardless.
So far, the only people I have been intimate with since being infected are people I have previously been with prior to my diagnosis. They are people I have known for years and they know me as a person, and don’t actually care about the HIV. Obviously, I did have to give them some information about my status and what that means but as soon as they have understood that, it has not been an issue at all.
Some of the most support and understanding though has come from within the HIV community itself which is a real blessing. It has helped me feel normal, that I don’t have something wrong with me, I’m not ‘dirty’, and that I can still be a sexy woman despite my HIV status.
Some of the most support and understanding though has come from within the HIV community itself which is a real blessing. It has helped me feel normal, that I don’t have something wrong with me, I’m not ‘dirty’, and that I can still be a sexy woman despite my HIV status
Organisations such as Living Positive and Positive Women in Victoria are a wealth of knowledge too. They have peer-support workers - a support worker who is also someone living with HIV, who can identify and understand struggles and challenges. We also have social events which is great. Some of the time we also spend discussing exactly this, the stigma - how we handle it, what has worked for us and what hasn’t. Because stigma is so widespread knowing about these strategies as well as sharing supportive professionals we have come across in various fields, such as dentists, G. P’s, tattooists, beauty therapists and psychologists who we can utilize without judgement is really beneficial.
The sad reality is that we have to discuss all of these elements in order to avoid being humiliated, targeted and stigmatised against. In a fair world, other people would be educated and have more understanding or even just have some common decency to know how to handle a situation they don’t understand without being rude.
Shona Hendley is a freelance writer. Follow her on Instagram @shonamarion.
