“They used to say to people with AIDS “You are not alone.” Multidrug resistant tuberculosis is a different story.” Paul Mayho, in the BMJ.

Multidrug resistant tuberculosis & HIV: A personal experience
Paul Mayho. BMJ 1997;315:1317 (15 November)

I have heard tuberculosis and HIV called the “devil’s alliance.” You would have thought that having said to myself that HIV would not happen to me I would not have been so shortsighted as to assume that tuberculosis would not happen to me either—it did. Only it was not tuberculosis in its regular outfit but in a multidrug resistant form.

I felt completely dehumanised, more like a disease because that is how people treated me. Everyone had to wear masks when they came into the room and most of my friends and family had been barred from coming to see me. Only five named visitors were allowed. All I ever saw were people’s eyes and I realised that when we communicate we take in a lot about what people are saying and how they are saying it through their facial expressions. I became good at reading people’s eyes.

Eventually the cocktail of drugs I was on worked, and I was discharged. I ended up in temporary accommodation in a strange part of the city with refugees. I did not even have a knife and fork. I had had a decent lifestyle before, but that was gone. The prolonged period of isolation had taken its toll. I was frightened of busy roads, I had to think about how to use a telephone, and I had forgotten how to cook for myself.

As time has gone on I have pieced together my life and rebuilt it as best as I can. The compulsory move cost me £10 000. I had no financial help from the health authority or anyone else. Friends and colleagues with HIV and AIDS shunned me fearing that I might infect them. They were unable to grasp the fact that I was no longer a danger. It is difficult to describe what it feels like to be rejected by your peer group.

Of course I am hurt and angry. I am thankful that I am alive and sorry that the other people who were infected are dead. I think that my knowledge of my HIV status for seven years was an advantage and the fact that I had worked with people with HIV for some years helped. Though things are slowly improving, I still find myself having to deal with prejudice, fear, and misunderstanding.

They used to say to people with AIDS “You are not alone.” Multidrug resistant tuberculosis is a different story.

Paul Mayho, lives in London. Read his entire essay here.


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