With the advent of antiretroviral therapies (ART) in 1996 the fate of those living with HIV/AIDS changed. They were offered a hope that that they would no longer die an early death but that they could expect to have a better quality of life – potentially even a life where they would be able to work and participate fully in society.
In 2015 nearly 90,000 people in the UK received specialist HIV care. The 2010 Equality Act recognised HIV as a disability from the point of diagnosis, regardless of whether or not the virus has yet started to make an impact on the individual’s physical health. But the stigma and prejudice surrounding the condition remain: nowhere more so than in the workplace.
The 2014 National AIDS Trust survey into public knowledge and attitudes towards HIV/AIDS found that a third of people do not feel comfortable working with someone who is living with HIV, and 37 per cent agree with the statement that ‘my employer should tell me if one of my work colleagues is HIV positive’.
The argument is a circular one: very few organisations have policies in place relating specifically to employees living with HIV/AIDS because very few employees feel confident to declare their disability, given the ongoing stigma. Management of HIV still potentially requires regular clinic visits, the side effects of the medication can be debilitating, and the mental impact of the diagnosis can be catastrophic. But all of this has to be hidden from view for fear of the repercussions. A 2008 study identified “The burden of secrecy and lack of community and social support” as being the most significant influences on suicidal thinking amongst the HIV+ community.
My situation was different. I was diagnosed 11 years ago with HIV and AIDS (my AIDS-defining illness was progressive multifocal leukencephalytis). At the time of the diagnosis I was given two weeks to live. I was a middle manager in the civil service in one of the smaller, but high profile, government departments in Whitehall.
I was off work for nearly five months. During that time, my employers were only informed that I had encephalitis, because sexual health records are strictly confidential and kept separately to all other medical records. On my return to work I informed my line manager of the full diagnosis. She asked me not to tell the team that I managed, because she was concerned about how they would react.
It was difficult. While I was recovering physically, the psychosocial effect of a traumatic diagnosis of the type I had received, cannot – indeed should not – be ignored. I no longer felt able to be a line manager, but my employers insisted that at my grade I had to manage a team, and that if I were no longer able to I should take early retirement on medical grounds. The assistant director of HR actually completed the form for me: all I had to do was sign on the dotted line. I refused.
So I joined the trade union, which was willing to take on my case – even though it was a pre-existing situation – because they felt that it was unique enough to warrant their attention and support. We fought for nearly two years, while I was on a return to work programme lasting nearly the whole of that period.
During that time I ‘outed’ myself by speaking at an internal event on invisible disabilities. Before I did so, I told my line manager that I needed to inform my team; I did not want them to learn of my condition third hand. She agreed very reluctantly – she was concerned about a backlash against her, something like: ‘you should have told us, so that we could avoid sitting next to or using the same keyboard as Roland’.
My team were shocked and upset, but nobody expressed any anger. The event was publicised with posters, some of which were defaced with graffiti and a couple were slashed. Having spoken publicly, a small number of colleagues approached me confidentially. A couple had also been diagnosed with HIV, another had a close relative diagnosed, another a good friend coping with the disease. None of them knew where to turn to for information, advice and support.
After two years, it was agreed that part of my reasonable adjustment would be that I would be allowed to apply internally for a position below my current grade, with no line manager responsibility, but that I would continue to be paid at the higher grade. I gratefully accepted this offer.
Later I became voluntary chair of the disabled staff network, and for the next seven years my employers and I rubbed along together until I left in 2015. I am now, among other things, the HIV/AIDS special adviser to the Employers’ Forum on Disability, and vice-chair of the National Long Term Survivors’ Group.
My employers, my line manager and me had all been caught up in a lack of knowledge; in not knowing where to go to find the appropriate support and information needed to manage the situation suitably.
As with many things, hindsight is truly wonderful. But there is still no cure or vaccine for HIV/AIDS. The rate of infection in the UK continues to rise. And as more people living with the condition are able to carry on working, the greater the possibility is that you will one day encounter a similar issue, so you must be prepared. Organisations such as Terrence Higgins Trust, the National AIDS Trust and Avert can provide information and advice.
Roland Chesters (FRSA, MCIM, AssocCIPD, AIEDP) is the founder and chief executive of Luminate, a disability consultancy firm.