“I hope my experience demonstrates that HIV education can empower students”

I found out a family member was HIV positive when I was twelve, after a really difficult period of time seeing them recover from advanced HIV and not knowing what was wrong. The lack of education on HIV at my school and others my friends went to, contributed to years of internal struggle and conflicted emotions. 

I could not blame friends and peers for the impact of uneducated comments like ‘Don’t touch that, you’ll get AIDS’. Or the severe anxiety that by correcting them, I would stand out. If I fought back the anxiety to share facts, I risked isolation. As a direct result of the stigma and resulting need for secrecy, I couldn’t explain why I knew things about HIV other children, or even some adults, didn’t. 

If however, I said nothing, then came all-consuming guilt that I hadn’t acted on the opportunity to educate my peers and stamp out the stigma that was affecting me. This became harder and harder the more I saw my family member face discrimination and stigma, including from medical professionals, as they navigated their diagnosis. Now I realise, as a child it wasn’t up to me to educate my peers. And the spiral of fear, anxiety, isolation and guilt didn’t need to be mine either. 

Stigma causing secrecy

The secrecy caused by the stigma meant my class teachers didn’t know that I was facing seeing a family member recover from advanced HIV at home. I wasn’t able to get the support and understanding that I had seen other students rightly receive when they had a family member facing illness. I felt truly alone.  

The lack of knowledge on HIV from teachers affected me in lots of ways. I was told I was incorrect after I plucked up a courage to correct a biology teacher when they said incorrect statements about HIV. When I asked to leave a lesson on the history of the HIV epidemic, I faced a huge internal struggle when my teacher wanted to know why I wasn’t comfortable staying. 

Reaching out for support

When I reached a point I knew I needed to seek support, I sought counselling through one of the pastoral teachers at school. I felt I needed to share with them that I was affected by HIV because this was one of the main reasons I wanted support. 

There was an instance, where in order to keep the same pastoral carer as I moved up a key stage, she felt she needed to share with another teacher that I was affected by HIV and also which one of my family members was living with the virus. Although this teacher had my best interests at heart and wanted to ensure that she kept supporting me, her lack of understanding that someone’s HIV status is special category data hugely impacted me and my family member at an already really tough time. We felt a huge betrayal of trust and powerlessness. 

The teacher she shared the information with was one of my class teachers and I’ll never forget the vulnerability I felt when I walked into their class for the first time after they were told I was affected by HIV. Suddenly, I was being taught by someone who knew a huge part of my life that not even my closest friends or other family knew. 

Education as empowerment

I hope my experience helps demonstrate to teachers that HIV education can empower students in many ways. In addition to the knowledge of how the virus is – and isn’t spread – it can provide valuable support for a pupil living with, or impacted by HIV. Without it, young people risk leaving school unequipped to protect themselves from HIV and more likely to contribute to the stigma faced by people living with it.