What is it like to live with HIV?

One of the major frustrations holding back progress on reducing the spread of HIV, though, is stigma, which is deterring people from getting tested and contributing to the persistence of the pandemic. I’ve been speaking with Haywood Dikibo who caught HIV in Nigeria...

Haywood - It's very scary back in Africa to be diagnosed with HIV, most times are scared to tell anybody. You are scared of dying, you're scared of everything.

Chris - How did you know you had it?

Haywood - There was a bit of sensitisation as to HIV, and I had just left high school and you know, I just took myself out of fear to the hospital to run a test and was asked to come back the next day. I initially was given a result that said I was positive and only to find out I wasn't. I felt a kind of relief, till I saw my result and it came out positive as well. So that was how I found out.

Chris - How old would you have been at the time that that diagnosis was made?

Haywood - It would have been just before my 17th birthday.

Chris - Was there anyone you could confide in? Friends, other people of sort of similar age, similar situation?

Haywood - Because of the peculiarity of Nigeria at that time where the culture of shame and discrimination was really high. Still is, there was no one I could talk to. I couldn't even get an accountability partner. I had to phone an activist that was in the United Kingdom and to present his number for an accountability partner.

Chris - So you couldn't even tell your family, for example?

Haywood - Oh my, that would've meant me going through another level of trauma.

Chris - So do you think then that this is seriously hampering people seeking testing? Because you were obviously quite forward thinking and thought I want to know, but there must be people who would think confronted by those sorts of barriers and risks, they'd rather not know?

Haywood - Oh yes, this is actually, it actually poses a limitation because you even find situations where the healthcare providers that are supposed to protect and respect confidentiality, also play into stereotyping, discriminating and shaming people living with HIV.

Chris - Have you confided in your family since?

Haywood - So many years ago I did try to make it open to them and they made a joke out of it, not believing, but yes, since I moved to the UK I did. I have communicated because I happen to not, have been the only person. Also counselling, a couple of family members that found out that they were positive.

Chris - I was going to say, did anyone else in your family then come back to you and say, well actually I think I might be in the same boat?

Haywood - Oh yes, some people got back to me. They found out and you know, their stories came out, and I had to encourage them and walk them through the work.