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Last Friday was World AIDS Day, where we remember that the fight against HIV/AIDS isn’t over. It’s a reminder that people are still dying from AIDS-related illnesses. It’s a reminder that there is still so much more work to do to stopping HIV. It’s a reminder that stigma around HIV still exists.

HIV is one of the most stigmatised diseases in the world – stigma is such a massive problem for people with HIV. Stigma can be more damaging than the virus, and stigma stops people getting tested. It can stop people from taking and accessing treatment. More importantly stigma kills.

I found out that I had HIV on August 15th 2015. It was a beautiful sunny day, when I got the call from the local clinic that I needed to go back for further testing. I remember speaking to a friend as I headed to the clinic; she works in sexual health who told me not to worry as it was probably a false test. I was ushered straight in and spoke to a doctor who, after a quick test, told me I was HIV positive.

In that very moment my world just stopped.

Lewis with fellow volunteer Sindy on placement in South Africa

I heard the words and I shut down. How? Why? I felt an overwhelming sense of disappointment in myself. See, I grew up in a culture where the ones who become positive were promiscuous. They were ‘dirty.’ I knew from that point the hardest part was trying to overcome my own stigma.

Aside from telling my partner at the time, the hardest people to tell were my close family and friends. It’s not like telling someone you have cancer, there is a difference.

The same fear and stigma crept in and they were devastated. I knew I would need to educate myself, my friends and family to really understand it. I gradually started to disclose to people. I have been called ‘dirty’ and even had a guy cross the street after I had disclosed my status to him. But not everyone has been bad and there have been some incredibly supportive people who have helped me normalise my status and my previous relationship was with an HIV negative guy.

The community of Ntibane where Lewis volunteered

I realised with the support of friends and family around me that I can use HIV to change the world. I’ve used HIV to take me on a journey that most recently saw me volunteering in rural South Africa with Restless Development. The HIV rate there was 40% and increasing. In that community stigma stops people getting tested and taking treatment. In that community no one wants to talk about it. In that community stigma kills.

So I have decided to use HIV and my experience to continue and expand the discussion for a more open dialogue to bring about a positive change for those living with HIV. See for people living with HIV, the stigma can often be more damaging than the virus.

Many people hide their status for fear of discrimination, but it shouldn’t be this way. What we need is a more open dialogue between HIV positive and negative people. I am healthier than I have ever been; I will live a normal healthy life, taking just three tablets a day. I am undetectable which means that I cannot pass the virus on even if I have unprotected sex.

HIV does change your life, it changed mine. What the world needs now is a more open and honest discussion about HIV, to ask questions and stop fearing it. It’s time that you and I move past stigma, move past shaming people because of their status and support each other in fighting something that there is effective treatment for. Because we need to fight HIV and not the people living with it. We can end HIV by tackling stigma.

Let’s remember the ones who have lost the fight, for those who are still fighting, for those who have lost loved ones. Let’s fight HIV with passion, with activism, with courage, with hope, with love, and above all positivity.

Lewis Smith is an HIV activist and founder of Proudly Positive.  Find out how you can get involved in the campaign by visiting the website.


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