‘Keeping HIV a secret made me feel so isolated’: REAL STORIES from people dealing with HIV discrimination

01 March 2018

HIV stigma is the greatest barrier to fighting the global HIV epidemic. On world Zero Discrimination Day, we challenge everyday stigma by sharing experiences from around the world.

faces staring into camera

To mark Zero Discrimination Day, we share three stories from people living with HIV around the world, highlighting how stigma has affected their lives, and what they’ve done to overcome it.

Wendy from the Netherlands described her struggle to let other people know that she is living with HIV. Afraid of judgement, she ended up keeping her status a secret for years:

"I was in a long-term relationship when I was diagnosed six years ago. It turns out I was faithful but my partner wasn’t. At first I really thought it would be the end for me. I was so ashamed of my situation and my mistake. I felt like if I told someone that I was HIV-positive, they would judge me and look at me differently. So I kept my illness secret for about three years, but keeping it a secret made me feel isolated from the world. I thought that no one would accept me or my situation, and so it stopped me from being able to find someone that I could trust at all. There are so many stereotypes around HIV and they make life so much harder. It is tempting to keep your status a secret."

"I think if we were to change the way we think about HIV, finding a way to view it more positively, we would treat the people with the illness much better, and it would make the world a much better place to live."

Unlike Wendy, Salif, from Malawi, was born with HIV. For him the challenges were around managing his health while being a teenager, going out with his friends and having sex for the first time. 

"I found out I was HIV-positive when I was about 17. Before then, I had always had to take medicine but never knew what for. My mom died a long time ago, so I only had my Dad to teach me this stuff."

"I am still very quiet about my status to my friends. Not many people know because there’s too much of a risk of someone telling. But telling my girlfriend and her saying to me that she didn’t care at all, was one of my happiest moments."       

"As I’ve grown older, I’ve learnt to not let my status bother me too much. I live the life of a normal young person, I have many friends, and have all the fun in the world. I HAVE NO LIMITATIONS. To others I say: HIV doesn’t have to limit your life. I surely don’t let it! "

Ricardo, from the USA, however faced more difficulties in coming to terms with his diagnosis. For him it triggered a bout of depression that made it even harder for him to start treatment and access his right to health.

"There was a while after I was diagnosed where I was just taking life day by day. I was so depressed and ashamed and scared that I would be judged. I only really got over these feelings as I started to forgive myself and my partner. At first I blamed myself and my partner a lot, but changing the way I thought about myself helped me to build up the courage to get over my fear, and start my treatment. I think that for other people out there the most important thing is to love yourself and never give up."

People’s experiences of living with HIV vary drastically around the world – yet stigma and discrimination, or fear of them, are often the common thread. Let’s use today to recognise stigma across the world and call it out, so that everyone can access their right to a life free from discrimination.

Photo credit:
istock/LeoPatrizi. Photos are used for illustrative purposes. They do not imply any health status or behaviour on the part of the people in the photo.

Written by Francesca Harrington-Edmans

Content Editor