This is the experience of Paul, a man with HIV in Scotland, told in his own words. This excerpt focuses on his experiences relating to work, HIV and rights.

The longer you’re off work the more people are saying well why is this person off? What’s wrong with them? So you’re fearful of going back because you don’t know what’s been said or what’s really going about.

“I actually decided to disclose to work when I took my first pill, which was seven years ago now. I went up in the morning and my boss clearly knew there was something wrong; I was shaking because I’d just taken a lot of powerful drugs and it takes a while for the body to get used to them. So I took him aside and I said this is the way I’m living now and this is what I’m having to live with. 

“When you disclose to work you want to choose someone who you trust, who’ll look at confidentiality and disclosure and how to keep that information safe. He said he didn’t know hardly anything about HIV but that he was just there to listen. I said I might need to take a few more days off work, I might go away and take pills, I might not feel well some days.

The longer you’re off work the more people want to know

“He said that’s all fine, but then when I did get really unwell, and I was off work for more than a year on and off, my work were starting to get concerned. I mean I wanted to come back to work but they sent me to occupational health and it all came out again. I was having to disclose all this information again to a stranger.

“The longer you’re off work the more people are saying well why is this person off? What’s wrong with them? So you’re fearful of going back because you don’t know what’s been said or what’s really going about. When I eventually went back to work I went to work at a different part of the company, for a different manager. I met up with her just before I went back and she said the area manager has told me all about you, I know all about what’s wrong with you. I said ‘I beg your pardon’. She said I know what’s wrong with you but I’m not sure who to tell. 

“I said well firstly, it’s none of your business why I’m off, I’ve got a chronic health condition, which is now being managed perfectly well so the people at the occupational health said I could come back to work now. And secondly, the area manager shouldn’t have breached my confidentiality without telling me that information. And thirdly, it’s up to me who knows, you shouldn’t be telling anyone, you shouldn’t even know that information. So I think it kind of helps to know about your rights – I sort of hauled them over a barrel for it, for all those points.

Knowing your rights protects you

“I got a book about employment law and HIV and I pinned the area manager down. I said listen, why did you do that? He had no right to give that information out. All he had to do was say this person is fit to come back to work. He said my new manager was badgering him, wanting to know if I’d still be able to do my job properly. I said well, it’s nothing to do with her. 

“It did make me really unsettled about going back to work, but I did get over it. I’ve certainly had a real mix bag of disclosures. Some have worked really well, others have been quite hurtful.

“The good thing is that in my experience if you work for a big organisation that has a HR department, you’re more likely to be treated more fairly, closer to the letter of law. Whereas if it’s a small family firm that doesn’t have the knowledge or the processes in place, I’d imagine it could be more difficult. 

“Also I think it’s quite important that when I came back to work, I asked for reasonable adjustments, which if you don’t disclose, they don’t know you’re entitled to. So I basically exercised my right under the Equality Act so they couldn’t turn round and say no you can’t go to the hospital for your appointments , you can’t take time off, you can’t take flexible working hours, all these sorts of things, you can’t have access to toilets, you know you can’t have time away to take your medication. 

“So I was protected because I know my rights. I think especially if you have a larger organisation that understands that and can keep your confidentiality, it’s good to tell them, because it does give you the flexibility, especially with your treatment and the way you look after yourself. Not everyone will want to tell but sometimes it’s quite useful when you’re going through transition periods and different treatments, those sorts of things.”