World Aids Day: Two men diagnosed with HIV tell of their pain of stigma
The date that James McAbraham was diagnosed with HIV is seared into his memory. On November 1, 2002, just three months after being infected, he learned that the virus had advanced so rapidly, it had developed into Aids.
Within a year James was medically retired and not tolerating the medications prescribed to keep him well.
He has HIV-reactive arthritis, medication-induced brittle bones, sensory and motor peripheral neuropathy which affects his muscles, and constant joint pain and takes up to 21 pills a day.
He said: “Most of the time I can get by, I’m still a fairly cheerful person but I do have my depressive moments.”
HIV is a virus that attacks cells in the immune system which makes it harder to fight off infections and disease.
With early detection and treatment, most people living with HIV won’t develop Aids, which is the name used to describe a host of potentially life-threatening infections.
Now the 54-year-old, along with 16 others, is on a mission to change the attitudes towards people living with HIV by contributing to a new book.
Published by HIV Scotland and launched for World Aids Day today, Disclosures: Rewriting the Story About HIV is a collection of poetry, stories and non-fiction which challenge the often negative image of what it’s like to live with the virus in Scotland today.
James, originally from Aberdeenshire, moved back to Scotland from London in 2007, settling in an East Lothian village.
He said: “Basically I came home to die.”
Contributing a poem, dedicated to his partner at the time, to the book was important to James, who has enjoyed writing for many years.
He said: “For me, it’s about not giving in.
“I’m grateful I’m still alive to be honest, yes there are complications at times but sometimes just by living, we are teaching.”
He has experienced discrimination thanks to his health.
He said: “One of the big areas I’ve had prejudice is in my neighbourhood.
“I’ve endured years of hate crime because I’m an open person. It’s the combination of being gay, Jewish and HIV positive.”
His home was broken into and he was attacked during a two-year campaign of abuse that nearly drove him to suicide.
But the police were “amazing” and there have since been convictions.
While many attitudes have changed over the years, “there is still a long way to go”, said James.
He said: “I shattered my leg thanks to the brittle bones and two nurses were really quite hostile. It puts you off with engaging with care sometimes.”
James doesn’t speak to his mother, who disinherited him when he came out 30 years ago, but has been supported by his father’s family and friends.
He wants to “break down the barriers” around living with the virus. He said: “It’s about confronting the stigma. I hope that people will be educated by reading something that has personal lives in it and that there is hope.”
For HIV advocate and activist Will Dalgleish, 52, writing an autobiographical play for the book was an opportunity reflect on his own experience. He said: “HIV has transformed me into the person I am and there’s no point wondering what might have been without it.”
When he was diagnosed 29 years ago, there were no facilities or support services in place.
He said: “It was a death sentence then. There was nothing there to help so I just had to try and deal with it myself so you end up with all this baggage that you carry about.”
Will, from Edinburgh, told some close friends at the time but was scared about the implications of telling family and work colleagues.
He said: “The last thing I wanted to do was disclose my status for fear of rejection. Discrimination was rife at the time so you just bundled it up inside.”
“Even now, 30 years after the beginning of the epidemic, there’s still an issue and there shouldn’t be. It’s really easy to treat now and you can live a strong and happy life.”
Much of Will’s work focuses on encouraging people to get tested regularly and raising the profile of PrEP, a drug taken before sex that reduces the risk of infection.
He said: “People are frightened of disclosure or they’re frightened of what the implications of HIV are and that’s why I bang on about education.”
The dangers of a negative narrative is people not accessing services for fear of facing prejudice and discrimination.
Will said: “I had a safe space where I could talk to people about it, I felt empowered.”
The book is key, says Will, who is chair of the Lothian HIV Patient Forum, in moving the dialogue on.
He said: “It’s important. There are some stories that are sad but it comes back to education. If you read someone’s story and get a connection, that’s the best way to get a message over.
“[I want to live in] a world where we can all talk about it and all get tested if you’re sexually active. Where there is a system of compulsory education. Let’s face it, it’s not a sexy subject but we need to get a more positive message out there.”
Nathan Sparling, interim Chief Executive of HIV Scotland said: “This book personifies the experiences of the full diversity of people living with and affected by HIV. It challenges the misinformation and misconceptions that people have through the mix of stories and facts about HIV.
“It is an important message for this World AIDS Day, as the fight against the virus isn’t over. We must not let stigma get in the way of ensuring everyone’s right to a long, healthy and fulfilling life is realised.”