Johannes, aged 49, Kent

Looking out for myself when managing HIV with other long-term conditions

"I am originally from South Africa but in 2010, I moved to England to be with my civil partner and we now live in Kent.

My journey with HIV has been relatively easy in comparison to many people I’ve met, but I still have unmet needs. Some people think that because people living with HIV are on treatment, we are okay and are not worth worrying about. Quite often, healthcare workers tell me “you have no worries as you are on medication”. But it’s not that simple.

Recently, I have been struggling with angina and was very ill in 2017. I was treated by two doctors and two specialists who all had different opinions and were continuously changing my medications, and my health worsened as a result. It was primarily up to me and my HIV clinic to intervene and advise the specialists on what medications I should take. The Sexual Health Clinic at Canterbury was there from the start and their invaluable service helped to get my health back on track.

I worry about managing my other health conditions and how they interact with my HIV. Some NHS staff would rather print off information instead of having a meaningful conversation with me about HIV. It seems there is still a lack of understanding and knowledge about HIV, which makes it difficult for NHS staff to talk to their patients about it. If the patient and the sexual health clinic fail to be pro-active, a life is at risk.

I’ve been suffering with slow healing infections since my diagnosis, despite adhering to my HIV treatment. It is still a battle especially with dental issues and gum disease. My dentist often appears confused by my complaints. I think sometimes doctors and dentists alike forget everyone has a different biological healing clock. I have learnt to be patient and take recovery day by day.

No one is sure how HIV and other health conditions will be affected by ageing as I am part of this guinea pig cohort of people who acquired HIV in the early years of the epidemic, are now on ARVs, virally suppressed, and managing other health conditions alongside HIV.”

Click here to go back to Our Stories