Anne’s story

"It opened me up to meeting so many amazing people and learning so much about humans."

“The first person I met with ‘AIDS’, as it was universally called back then, was in the 80s in
London. He was a gay man called Robert. He was admitted to my ward with a severe chest
infection – all the staff had been briefed on ‘safety precautions’, which sounds very strange
now, but it was the reality back then.

I am a physiotherapist, so by nature a large part of my job involves physically touching
people, and I really did not want to wear gloves to touch Robert. All of us caring for him
were fully aware of the fact that touch carried no risk, but we were all human and a bit
nervous of the as yet unknown. Robert, who was extremely direct, said “I know you’re
scared, but I promise you, if you put your hands on me, I can’t give you anything.” I
wondered how many people he had to say that to. He was right, of course.

He was on my ward for many months, and developed great relationships and trust with all
staff. When Robert died, it took literally weeks for us to find an undertaker to handle his
remains. Everyone was to a greater or lesser degree afraid back then. Sadly, for a time,
fear of a virus became a fear of those perceived to be infected with it and some gay men
in particular were subjected to press and some public hostility. Viruses don’t discriminate.
People can and do, however.

After a spell setting up a physiotherapy service in rural Zambia, I returned to London in
1990 to a full-time post in an HIV palliative care centre. My role back then was very much
dealing with physical symptoms, from pain relief to rehabilitation of muscle weakness,
neurological disorders and poor mobility following an acute illness. I remember feeling a
bit ‘feeble’ with the limited amount I could offer but realised that it was very important to
these people to make their physical bodies as strong and healthy as possible. They still
“lived” in their bodies, as one client put it.

At one point, around the start of the 90s I remember counting the number of funerals I’d
been to in the last month, and it was ten. These were people, patients, clients I was close
to, most of whom were dying so young. It seems natural for your parents or grandparents to eventually die, but these were people of around my age that I could easily have been at
a party with, and it was moments like that where I realised how “unnatural” this was. It’s not
something I regret being a part of. I think you could describe it as one of those life
changing events of a generation. It was part of the reality of that time.

There was laughter too. Quite a lot. I remember a client going on holiday to Egypt and
deciding to climb onto a pyramid. (He was a stonemason). He was subsequently
arrested and held in police custody when, in an inspired stroke, he claimed
‘diminished responsibility’ due to AIDS – he said that they couldn’t get him back to his
hotel fast enough!

But things changed. Thanks to advances in medicine, things moved forward. 1997 saw
the beginning of combination anti-retroviral therapy, which coincided with my move to
Glasgow and the Brownlee Centre. Suddenly, it seemed, HIV was becoming a chronic
illness as opposed to a terminal one, and treatment and prevention continued and
continues to advance. This means that HIV evolved to become as it is today – a virus that
can be managed, lived with and not transmitted to others.

One positive thing to emerge from HIV care was being part of the establishment of multi-
disciplinary team working as a model for the best possible practice which applies to many
different clinical settings. The difference, for me anyway, was that the team supporting
those with HIV was truly holistic, embracing the medical, physical, mental and social
needs of our patients. We could all cross refer people to other team members, a system
which worked very well. This felt very much like humans coming together to enable and
support other human beings.

We’re privileged today because of what we learned yesterday. All the men, women and
children we sadly lost did pave the way for massive medical advances. From all the
tragedy of the past, there’s something positive to take from it. For many of us, regardless
of HIV status, it opened us up to meeting so many amazing people and learning so much
about humans. The ability of human beings to cope with the most awful unimaginable
situations and plough through to come out on top did prevail. People can and do rise to
the occasion, by and large.“

This story is a part of the ‘H is for Human – Stories of strength, courage and hope. 40 years of HIV in Scotland’ collaboration with the Terrence Higgins Trust.

For more information on Terrence Higgins Trust and to learn about the work they do, follow this link.

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