The worst thing about having HIV is knowing you’ve got HIV.
I have only come across one person who was very cruel about my status. It was someone I was arranging a hook up with and he was pushing to have sex “bareback”. People like to give condomless sex a cool name to make it sound more interesting and exciting. I had lost interest by then and again thought fuck it I’ll tell him and see what happens. What followed was a torrid of abuse containing things like “I can’t believe you would sleep with normal people”, “I can’t believe you would sleep me without telling me that’s breaking the law”. It’s not. “You must have really been sleeping around to get that” my only response to him was “You’re just scared, you obviously like to sleep around not using condoms and now you’re worried because you thought I was ‘normal’ and now you’re questioning your lifestyle” then I promptly blocked him.
The thing that annoys me a lot are the myths surrounding HIV. The things that people believe! If I try to explain a myth I can tell that they think I am lying or that I’m misinformed, that they’re right and they will still believe whatever it was even when presented with evidence that says otherwise. People still believe that HIV can somehow survive outside the body, that you can catch it by someone HIV positive bleeding on you. That if you have HIV you must be Gay, African, a whore or a junkie. I’ve heard some harrowing stories about how people I’ve met have contracted it but most are just the same as me, they had sex with someone and were unlucky.
I was asked to do a short public speech about stigma on world aids day. I was excited to be asked but I was also very nervous about talking and disclosing my status to an audience. At first I tried to write a speech about stigma and keep it neutral and not mention myself at all. However I’m not that sort of person, me experiencing HIV and living with it gave me the best voice to talk about stigma.
This caused a massive argument between me and D. I was proud to do this speech, to prove to myself how far I had come in a year. The year before I was down, depressed and looking for all sorts of escapes to get away from thinking about my status. I asked my parents to come (they were on holiday but they watched the video), I asked a few close friends to come and watch as well. D has still not learnt to cope with his status. He was still living in the head-space that he was in immediately after we found out. That having HIV makes you less of a person and that I shouldn’t be talking about it or letting anyone know my status.
At first I begged D to come along, it upset me that he wouldn’t. As the date got closer I just hoped he wouldn’t change his mind. I didn’t want him there. I didn’t want him bringing me down about this.
On the day I went over my speech and wrote it out. I asked D if he wanted to hear it but he refused. I sent it to a couple of friends to read over. I was mostly excited. When I got there I was last on the programme. I think 4 people spoke about HIV. How living with it had changed since they were diagnosed or since they started working with HIV patients. I grew more nervous as the time went on. I looked across the crowd of about 30-50 people and noticed the local LGBT youth group had come along. Stood there was one of my students. She hadn’t seen me yet. I met and spoke with the CEO of the charity running the event and he assured me that if I wanted to back out and not speak because of her being there he (or anyone else) wouldn’t think less of me. But I knew the girl and I trusted her not to spread it about what she knew about me so I decided to do it.
If I was a braver woman I would post the video of me doing it, but I’m not. I value this anonymous space to write about my life, but I will post what I said below.
I went to the platform, caught the student’s eye and gave her a big smile. She looked shocked; I didn’t look back at her again, I may have crumbled! During the speech I was nervous, my voice was shaking, I felt I touched my hair too much, gestured too much and talked a little bit too fast. But people responded. When I was talking I saw people nodding to what I was saying. They laughed at my small jokes and murmured agreements. When I was finished I got a massive round of applause. The charity had bought me some flowers and the CEO was moved to tears (a reaction I was not expecting!).
Afterwards everyone was telling me how brave I was to talk so openly. It didn’t feel brave, it felt like I was exploiting having HIV and all the help everyone had given me for a networking opportunity. Mainly I just hoped that I could influence some of the opinions of people listening. The ones who weren’t HIV suffers, the kids in the LGBT group, the ones who came with friends or just stumbled across the vigil and listened to see what was going on. That they would go away from there with fewer stigmas about people with HIV.
I found my student and asked if I could have a word. I asked if she wouldn’t mind not spreading this around school, to which she promised she wouldn’t. After that I asked how she was and if she was doing ok. With the deepest sincerity in her eyes she looked at me, put her hand on my arm and said “Miss, are you ok?” It was so sweet I laughed to stop myself choking up and said “yeah I am now”.
I want to talk to you about stigma, the stigma surrounding HIV and aids
We are lucky that in this country because of our brilliant medical services that having HIV doesn’t mean what it meant 20 years ago. HIV patients live long, happy and healthy lives.
I was tempted to say HIV sufferers. But I don’t suffer, not really. I suffered when I was diagnosed I was all consumed by the thoughts of people judging me. What will they think, what can I possibly do to explain? Every time I told someone I felt compelled to give them a list of my sexual history just so they knew it wasn’t me, it wasn’t my fault…..I wasn’t a whore or an addict, just unlucky. If you were diagnosed with diabetes would you be compelled to tell your friends all the fattening and sugary foods you’d been eating? It’s just not the same is it?
So why the stigma?
From my point of view its two things, one is sex, how most people get it. British people don’t like talking about sex and that’s one of the reasons the barriers are there. The other is the lack of education. I work in education and you’d be surprised that the myths are still there, you can catch it from a toilet seat, catch it from kissing, that you can’t have children. One I still believed until I was diagnosed.
I hope that young people having a good education will help the elders of our communities change their opinion.
I myself have never experienced any discrimination because of my status, not directly anyway….but the suggestion of it lingered. A few months after if I told people about it, I wanted to talk again but it was very hard to bring up, the topic seemed taboo. Like ‘yes we know you have it but let’s not talk about it in public’
Now I’m not wanting to wear a badge saying “I’m positive ask me how!?” But why can’t I bring it up in conversation with my friends?
Because it makes others uncomfortable. Uncomfortable to talk about it, uncomfortable to ask about it and uncomfortable to be asked about it. I had one friend tell me that she wanted to ask me how I was doing how I was feeling and coping be she felt she couldn’t that she shouldn’t because of the stigma around it.
Now no one I have told is a bad person, they all mean well and have accepted my diagnosis but some still judge others about how they might have caught it and have said things like ‘you just don’t know do you?’
And they’re right, I don’t know. I don’t care to know. It doesn’t matter to me, it shouldn’t matter. It was like it’s ok we accept you because we know you but anyone else we’ll still judge. All that matters is helping them so they have support, so they can manage and live without stigma without being discriminated and so it doesn’t develop into aids anymore because we won’t let it.
Without the help of my Dr and all the nurses and everyone who works at the clinic I wouldn’t be able to talk to you all like this. I remember hearing about this event last year and I couldn’t even bring myself to attend. Let alone be a participant. I want to help now, I know I can offer that support to someone who might come up against stigma from friends, family or co-workers. So at least they would know that there is someone who cares who is happy to talk about HIV. Because we all should be open to talk about it. So more people are safe and more get tested and it’s not hidden away anymore.