In this story: Services and Support /

"If only those people could see things now, they wouldn't believe it, that HIV is an illness that people just carry on with."

“When I first started as a counsellor for people living with HIV, my first patient was actually
a woman and her baby. I thought that was so unusual, because in 1998 it seemed that it
was only gay men who really had HIV. Back then the treatment was still in the very early
stages, and even when medication worked it had very bad side effects, such as
lipodystrophy, and just made people horribly sick.


A lot of people, when the medication was still so hard on their bodies, felt they couldn’t
cope with it, and that death was the better option. That’s something that came up quite a
bit. It didn’t mean you would die quickly just stopping your medication, that was the awful
thing. Initially, you would feel better because of the relief from the really bad side effects.
But then, inevitably, the effects of the HIV would start to kick in and eventually would take
it’s toll. If only those people could see things now, they wouldn’t believe it, that HIV is an
illness that people just carry on with.


My role at the start was very much about dealing with death, and trying to support people
in the best way I could. To help them have a better quality end of life. Some people were
lucky and had very supportive families, but I held many hands of people who were
completely alone. The disgrace, rejection, and absolute horror some people faced from
trying to tell their families why they were dying – it’s hard to remember because
everything has changed so dramatically. Now people can tell others they’re HIV positive
and it’s not a big issue, but back then it was such a secret. Things changed though, and I
went from being a grief counsellor to helping people come to terms with their diagnosis.


When I retired eight years ago, a lot fewer people were getting HIV because of treatments
and undetectable viral loads, and the attitudes towards HIV had drastically changed. People
weren’t so nervous coming to the clinic. However, one thing we did notice were people’s
attitudes about who was better than who regarding how they became HIV positive. As far
as we were concerned, each patient deserved to be there, and would be treated exactly the
same as one another. There was a lot of tension for a while. Then, the whole dynamic
changed again when we started to get people from African countries coming into our
services, which brought another completely different dimension to the whole thing.

Throughout my experience there were so many people that gave me just as much as I
gave them because of their attitude to life and wanting to help other people. Every single
one of my patients was special to me, even the angry ones, and there were a lot of angry
ones. But you can’t blame them, when there were all those myths at the time going around
about it being a punishment for gay men. It was awful, especially for gay men who were
struggling with coming to terms with their sexuality. There were definitely a lot of walls
up from years of living with prejudice, and sometimes the walls came down and
sometimes they didn’t. The whole job was actually pretty difficult, but we had such a good
team. We had a sense of humour and made sure to share laughs, which was really
important, especially for our patients. It was heavy stuff we were dealing with, but
everyone was amazing. I always wanted my patients to know how much I genuinely cared
for them, and that I wasn’t there just because I was getting paid to sit and listen. I
genuinely cared for them as individuals, not as numbers, and I hope they knew that.”


Maxine’s story is part of the H is for Human series, in collaboration with the Terrence Higgins Trust, sharing stories of strength, courage and hope from four decades of HIV in Scotland.

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

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