I LOVE a book. I love a good story. And I’m inquisitive (read nosey). Have you ever read ‘True Tales of American Life’ edited by Paul Auster? Auster and hosts at a radio station asked listeners to send in true stories to be read on air. The response was such that they produced a book. It covers all aspects of life, from objects to pets, love and death. It’s fascinating. It’s a book I return to often.
When I was diagnosed with HIV, I would ask people for The Book. But the response was mostly, ‘what book?!’ In the wee hours, when I was feeling low, I wanted a book I could take off the shelf and connect with. To know I wasn’t alone and to know that others felt how I was.
Sure, there are loads of individual stories out there, but I needed more than one voice. I wanted my version of Auster’s book.
When I started at Terrence Higgins Trust, I was working on the Peer Support Scotland project that was partially funded by ALLIANCE Scotland. As part of ALLIANCE’s work, they produce ‘Humans of Scotland’ a series of personal stories collected from the wide ranging people they support. I wanted us to be involved.
ALLIANCE were keen to coproduce with us. They agreed that too many people were still too far behind in their HIV knowledge, and this project presented a great opportunity that neatly ties in with the ethos of their collections.
Sharing your story is hard. Harder than you think. Especially with something like HIV - that is all encompassing and all too often is linked to stigmatising views. We know that today, the outcome of an HIV diagnosis should be nothing to fear. It’s a chronic health condition, with lifelong medication. Life. Long. It shouldn’t be the death sentence it once was. But it’s still a traumatic diagnosis to receive, because for all too many of us, we’ve believed the hype – the stigma, the fear.
We forget too, that an HIV diagnosis isn’t just felt by one person, it affects those who provide our care, and those who support us. It’s easy to overlook them, especially their similar feelings of fear and their loss. Their hope too. I’m honoured that we have included their stories here.
Stories connect us. They expose those fears. They remind us that we are not alone. That even in those ‘wee hours’ we feel comforted and reassured. Our stories are those of strength, courage and hope. I hope that the stories included in this book serve as a reminder, that when we talk of HIV, we must see the person. We must remember that, like the title of our collection, H is for Human.
Niamh Millar, Living Well Co-Ordinator