Living with HIV in 2017 – Case study

“When I was diagnosed as HIV positive in November 2010 my initial feelings were of being numb, of feeling I had HIV positive written across my head and that everyone knew I was dirty. I cried myself to sleep.

I needed to tell someone and that’s what I did the following day, I called my best friend David and told him, he was upset but I felt supported. 

I started my HIV medication very soon after my diagnosis and I remember I had really vivid dreams and for the first couple of weeks taking them I felt spaced out.  This passed and my thoughts of continually thinking the words HIV positive slipped and I began to forgive myself and not feel guilty that I had done something wrong. 

I felt lucky that I started working for Terrence Higgins Trust as a Health Promotion Specialist supporting other people who were living with HIV and also talking to people about looking after their sexual health and making the correct decisions about condom use, HIV and STI testing. 

I felt though that as much I was supporting others that I was not being supported myself and so I started to look around for other organisations where I could feel support and learn more about me. 

I found an advocacy service called UK-CAB, it’s a network of over 850 community treatment advocates from around the UK. 

I was invited to attend training about HIV advocacy, and on HIV treatment and how to represent yourself and others at NHS and Pharmaceutical meetings.  

I became very aware of what being an HIV Advocate is.  It’s being a voice for yourself and others and shaping what our future will look like.

I also took part in HIV Scotland training on how to tell your HIV story. And sat on the HIV Scotland Positive Persons Forum for three years organising the largest gatherings of HIV Positive people living in Scotland. 

I have also successfully applied to be on groups such as the BASHH (British Association of Sexual Health and HIV) working group for men who have sex with men. 

Through this work we produced a U.K. Guide booklet titled Buying PrEP online. 

We are lucky in Scotland to have PrEP available as a tool to reduce HIV transmissions amongst high risk groups. We are the only country in the U.K. to prescribe PrEP for free and now we have successfully been able to supply Generic PrEP into Scotland to reduce costs.  Again, Scotland is the only country which supplies this generic drug.

I’m 52 years old on the 5th December, I’m now in the category of being amongst a generation of people living with HIV which is reaching old age and living well with their HIV.

My life expectancy is the same as anyone else out there as long as I take my HIV medication.

I have an undetectable viral load which means I cannot sexually pass my HIV to anyone else.

The U equals U campaign (undetectable equals untransmittable) is a worldwide campaign to promote that if you are on effective Anti-Retroviral Therapy the risk of passing HIV is negligible to the point of Zero. 

 Terrence Higgins Trust have another campaign called Can’t Pass it On which promotes the same response as the U equals U campaign.

 So it’s November 2017, it’s 7 years after my HIV diagnosis.  How do I feel?  I feel as well and as happy and contented as anyone else you pass in the street.

I’m a normal human being getting on with their life but also supporting those who have not yet found their HIV Advocacy voice. I’m a trustee of an HIV charity called HWUPENYU which supports the black minority ethnic groups living in Scotland.  I like to give back, I suppose giving is my new support network.”

Published by

lewisbainbridge

Information and Communications Assistant at Fife Centre for Equalities