“I gained a sense of myself again” – combatting loneliness and HIV
As part of the Jo Cox Lonliness Forum’s focus on loneliness and disability, Andy reflects on how specialised HIV support services made a difference to him after his diagnosis.
I was diagnosed HIV positive in 2005 when I was 41 and just after splitting up with my boyfriend at the time. I knew nothing about HIV except what I remembered from the 1980's adverts; I thought I was going to die despite what the doctors told me.
I had no friends of my own in Birmingham as they were all connected to my previous partner. I was on my own with this information and mental trauma. I only told one friend who lived in Manchester and my older brother who is a priest. They both helped and did their best to support me but I was alone in Birmingham.
My doctor at the clinic gave me some information about support services and I eventually attended ABplus a support charity for people living with HIV.
I was terrified the first time I went into the building and after meeting a few people that day, I left after about an hour. I went back and stayed longer each time and began to develop friendships and started helping out as well.
ABplus helped me begin to come to terms with my diagnosis and talking to other people living with HIV helped me begin to believe that I wasn't going to die. It has been the most significant form of support I have had since being diagnosed.
ABplus lost its funding in June 2016 and all services are now provided by Swanswell under a new Service Level Agreement which does not include regular drop-in style meeting spaces so a few of us have started a new group called 'Positive West Midlands' to maintain group support, information and social activities.
Whilst with great treatment and medical care people living with HIV are living a normal life span if detected early, I know from personal experience that I would not be here without the support of other people living with HIV. I was so frightened and it would have been very easy for me to hide away and become isolated, lonely and with a very low quality of life. By coming together with others I gained strength, confidence and a sense of myself again. This in turn has allowed me to help others on their journey through this life changing diagnosis and I intend to carry on doing so through our new support charity.
I now have a wonderful partner who loves and accepts me (as does his family and mine now) and life is going well if a bit bumpy at times. I still find that I need the support of others with my mental health and getting older mainly but I would not be me without that support.
Please consider when cutting budgets, that the stigma around HIV is a huge barrier to us in accessing other types of care and that many people who prvide that care are still uneducated about it, as I was when I was diagnosed. We need safe spaces for people living with HIV to come to terms with their diagnosis and also help them back on their life path. If people remain isolated the outcomes (and care costs) for individuals are not ideal.