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Case Study

Roland Chesters

"In 2004 I was working as a civil servant in a central government department in Westminster when I started to feel unwell. I was gradually losing the use of my arms and legs, the ability to speak, becoming confused, falling asleep at my desk. It was noticed at work."

I saw many different specialists and had many different tests until eventually in 2006 I was diagnosed with HIV and having an AIDS-defining illness: Progressive Multifocal Leukoencephalopathy (PML). I was off work for 5 months learning how to walk and talk again.

Sexual health records are kept separate and confidential to other medical records so my employers were only told that I had PML and nothing about the rest of the diagnosis. On my first day back at work I shared the full diagnosis with my line manager. Not for pity or sympathy, but for understanding and support. She gave me those but, with my agreement, felt she had to share that information with HR. HR almost immediately came back, sending me an email saying that I was not allowed to share this information with anybody else as they, my employers, did not want to be held responsible for how people may react to that information. They gagged me. They stole my voice. They shut down my access to that understanding and support I so needed at that time. And that set me on a downward spiral of mental decline, to the point where, some time later, I tried to end it all. My partner saved me. And I could not talk about that either in the workplace.

I joined the Disabled Employees Network in that government department. They were organizing an internal event where several colleagues were going to talk about their invisible disability – all talking about mental health. I asked if I could talk about HIV/AIDS and it was agreed. As it was agreed quite late my name and details about what I was going to talk about didn’t appear on the publicity about the event. On the day, the room was packed out, standing room only, probably about 150 people, including some senior HR Managers. All the other speakers, one by one, said they felt unable to speak. There was only me left. I thought this is my only opportunity, it’s now or never, sink or swim. So I stood up and said “I’m Roland Chesters, your colleague, living with HIV and AIDS.” You could have heard a pin drop. I spoke for about 30 minutes on my diagnosis and the response I had received from my employers. At the end people stood up to clap and came forward to hug me. The HR Managers huddled together at the back of the room. They knew that I could no longer be gagged.

After that, I was invited to be the Chair of the Disabled Staff Network. Reasonable adjustments were put in place to enable me to work comfortably. I learnt so much from that experience and so, I like to think, did my employers. Sadly, I know that not everybody is able to speak up and speak out so openly. But until we have a collective voice of people living with HIV who feel able to talk about their status in the workplace that situation will not change."

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