By the beginning of 1987, Jonathan Grimshaw had established himself as the UK’s most visible HIV-positive man. He looked striking: he was 32, bald and he often wore a bow-tie. He spoke eloquently about a terrible disease, something he’d been diagnosed with soon after the tests became available in February 1984.
With no specific treatments, his prognosis was not good, but he believed his best chances of survival lay within the realms of activism, honesty and education.
Grimshaw looked after himself as best he could. He joined a gym; he ate well. And then there was his work, the sense of fighting the virus by doing something. “Psychologically, that was hugely important to me. I remember a few people who got very involved in the activism used to say, ‘This is the best thing that has happened to me – I’m doing something with my life now that’s really important and worthwhile, and if HIV hadn’t happened I would never have done anything like this.'” (Before his new mission, Grimshaw worked as a television production manager; his last project before diagnosis was a six-part series for Channel 4 called Survive.)
Grimshaw’s work expanded from Body Positive to include consultative and educational roles at many Aids organisations.
During this period, his blood was monitored every three months. For more than a decade, his T-helper cells, the standard gauge of a responsive immune system, remained high. Grimshaw was fortunate to be a slow progressor.
Fifteen years ago, things slowly changed. His T-cell count began to decline and he found he was continually exhausted. He retired from the Landmark in the mid-90s (the centre now caters for people with learning disabilities), and moved to Brighton, where he bought himself a flat and tried not to be too pessimistic. “If you looked at the downward slope on the graph it wouldn’t be too many years before it hit bottom and I’d be done for. The advice at the time was, ‘Cash in your pension, have a good time with the years that you’ve got left.’ So that’s what I did. I thought that was it.”
But then the drugs took effect. The new treatments, known as protease inhibitors, worked particularly well when taken in a carefully balanced combination, and Grimshaw has had to modify his particular cocktail a few times to combat resistance. Although bouts of breathlessness require him consciously to conserve his energy, he remains largely well. He is a little hard of hearing, but he attributes this to standing too close to nightclub loudspeakers.
Five years ago, he decided to stop the Aids work completely. But last year he came across a study by the Terrence Higgins Trust into the lives of people over 50 with HIV. “There were echoes of how things used to be and it got me very annoyed again. It’s been found that people with HIV are experiencing diseases of ageing, like heart disease or liver disease or kidney disease 10 to 15 years earlier than the general population.. And there are still problems even in the NHS of people experiencing stigma and discrimination.” Grimshaw volunteered again to work on strategy.
Even till now Jonathan is still working and positive about life. Helping people live longer with HIV is what he does. Living your life like you would have done without the presence of AIDS.