21 years supporting people living with HIV

An introduction by Martha Baillie of Waverley Care.

This year is Waverley Care’s 21st birthday and I’m proud to say that this is also my 21st year with Waverley Care. I want to touch on what the last 21 years of HIV has meant for us as an organisation and for the people we have worked with and continue to work with.

When we first started a diagnosis of HIV was a diagnosis of a terminal illness and, in Edinburgh particularly, a terminal illness most affecting people who were intravenous drug users and gay men. We described our services then as supporting people from diagnosis to death and much of our work was helping people come to terms with loss – loss of a future, loss of relationships, loss of the possibility of having children, loss of children or parents or partners – having said that people used to say to me then you must find your work very depressing and you know it wasn’t – it could often be sad and sometimes frustrating but despite working with so much loss there was always also a sense of life – with the many children who came in for groups and play schemes, bringing all the things that children bring – with the arts workshops and events that helped people to recognise and celebrate themselves and each other – and often great joy and laughter and fun.

There have been some major changes in HIV over the past 21 years – the most significant being the introduction of effective treatment for HIV – not a cure – but treatment that means for those for whom it works HIV can become more of a manageable long-term condition. There are provisos to this – treatment works better for some than others – side effects can be difficult and bring their own problems and treatment works best if people are diagnosed early in their infection and that is often not the case. The success of treatments has meant that we are now supporting people to live with HIV rather than coming to terms with dying.

There are many reasons why I am proud to say that I work for Waverley Care. Over the years we have responded quickly and flexibly to changing needs, we are good at being creative and coming up with solutions, we are good at seizing opportunities for funding, for partnerships, we are good at doing amazing things with small amounts of money and we are good at supporting people living with HIV to be involved, to move forward. We have always worked with everyone living with HIV, whilst we offer groups and projects that are specific to gay men, Africans, children & young people, and women, we have always welcomed everyone with a positive diagnosis into our services.

We have survived. When I started there were a myriad of HIV services and organisations which are now gone. I think we have survived because we are always professional, adaptable,  strategic and we have a staff and volunteer group who are absolutely signed up to an ethos that puts people living with HIV at the heart of everything we do and is not embarrassed to care.

HIV stigma is still with us, it’s changed in that it’s not so blatant or so crude but talk to anyone living with HIV and they will tell you of rejection, of their reluctance to ever tell anyone what illness they have – you know I think HIV is the only illness where people want to know how you got it, they either outright ask or you can see them thinking it, and running through the – well you’re obviously a gay man or you’re a nice, middle-aged woman how on earth did you get it – and the funny thing is I think most people do know that HIV is a sexually transmitted disease but you still get people backing away as if any physical contact might do it. We do well to remember that every HIV diagnosis is someone’s story, it is not for us to judge or assume or guess, it is for us to be alongside, to be accepting, to make a safe space.

This is why our supporters are so important – financial support helps of course it does – but as important are people who are willing to be associated with Waverley Care, willing to talk to others about their connection, willing to answer the questions about why. This helps to shift some of the misconceptions, the assumptions, the discrimination, the stigma and helps to make it that bit easier for people living with HIV.