Sarah Watson, UKC Community
Hero Award winner, tells PN why all HIV positive people can be heroes if we
stick up for and look after each other
Words Martin Flynn
Images Piers Allardyce
Sarah
Watson’s birthday is on 1 December, World Aids Day, and every year she
has to cope with both celebration and sadness. Last year she made it to the
grand old age of 30 after 13 years of living and struggling with the virus.
Just a week before her birthday, Sarah was presented with the UKC Community
Hero Award at a glitzy dinner at London’s Old Billingsgate Market, on
the banks of the Thames. Sarah was up against some of the top movers and shakers
in the HIV sector, but still managed to get more than 30 per cent of votes
cast by PN readers.
“When host Gaby Roslin announced me as the winner I was absolutely gob-smacked.
On my way to the dinner my sister asked me if I’d prepared a speech
and it didn’t occur to me that I had a chance.
“I feel very lucky up against such heavyweight candidates. And I feel
very privileged and hope I can live up to it.”
To hell and back
Sarah was brought up on the outskirts of Woking, Surrey, classic commuter
suburbia country, but she wasn’t born with a silver spoon in her mouth.
“I met a guy called Dave when I was 17 and thought he was the love of
my life. I thought he was a nice, responsible young guy and we moved into
a bungalow together in Walton-on-Thames.
“Soon after, I found out I was pregnant. It was totally unplanned. I’d
always wanted a family so was very happy about it. Then Dave suggested we
have an HIV test. When you’re in a relationship at that age you just
don’t think about pregnancy or HIV.
“Sex education at school was very limited; one short talk. I remember
a big scare about Aids when I was 13 and saying to my best friend: ‘If
either of us ends up getting it we must promise to tell each other.’
“I thought Dave was the guy I wanted to spend the rest of my life with.
He said he’d had an HIV test with his previous girlfriend and it was
negative. He said we should get tested for the baby’s sake.
“A week after I found out I was pregnant, Dave and I took the HIV test.
When we both came back positive he blamed me; he swore blind I’d infected
him.
“I had an abortion a week later. I went through hell. At first I didn’t
want to accept it; I was really upset to have lost the baby.
“Both of us were HIV positive and we didn’t think we’d be
around in 10 years for our child. It was an immediate decision to have the
termination and the local GUM clinic advised me to do it.
“Three months later I found out that Dave had been an IV drug user.
His brother called me and told me he was HIV positive too. I said: ‘What
the hell is all this about?’ It came out they’d both shared needles.
“After the diagnosis, I felt really guilty.
I was too understanding of Dave. I didn’t instigate using condoms and
he didn’t either. We were practising unsafe sex. I suppose I wasn’t
educated enough.
“I thought my life was over and went totally downhill, physically and
emotionally. I developed pneumonia within a month and was hospitalised.
“I am severely asthmatic and was having more and more attacks. My CD4
plummeted to 130 and the doctors didn’t think I was going to make it
and told my mum to expect the worse. I didn’t even realise it was happening.
I got very thin and went down to eight stone.
“Dave was a nightmare and a criminal, too. He ended up in prison for
burglary the night before I was due to have the abortion. I didn’t know
if he was still injecting drugs but it was a time of recession and we were
struggling financially.”
No
preaching or blame
“I told my sister about the HIV immediately but Dave didn’t want
to tell anyone.
“When he went inside, I went to stay with Mum because I couldn’t
cope. I told the rest of my family the worst of it all a week before I ended
up in hospital with PCP. All I could think about was Mum and what she was
going through.
“She and my sisters were fantastic. My mum’s new partner had just
been diagnosed with cancer and was very understanding. Mum gave me a huge
hug and said: ‘We can deal with this together now.’
“And we have. There was no preaching.
I didn’t blame Dave either and we stayed together for another couple
of years.
“Apart from the old school friend I mentioned, I’d promised to
keep my HIV quiet. But the news got out and I became scared. One day I walked
into the local pub holding onto my sisters and we held our heads high.
“But there was horrible stigma and abuse of people with HIV in the early
1990s. I went to a party and heard everyone talking about me. I had eczema
all up my arms and they said I was injecting drugs and that’s how I
got HIV.
Hell hath no fury
“I met someone else and phoned Dave to tell him it was over. He went
mad and trashed the flat; ripped up the carpets, tore wallpaper, pulled down
shelves, scratched the paintwork, destroyed everything. He left me with just
a knife, fork, spoon and plate. He trashed everything; photos, mementoes,
all of our history. Then he totally disappeared. I got a couple of phone calls
but told him it was over for good.
“Three years ago I needed to get his name off my flat tenancy so my
sister and I tracked him down like two Miss Marples.
“We had the area code of the number he’d rung from. It was Cambridgeshire,
so we went around all the pubs in the town asking about him. When we tracked
him down, my sister went round. Dave answered the door and all he had to say
was: ‘Is she dead?’”
My first combo nightmare
“I held out going onto HIV drugs until 2000. I didn’t want to
go on anything until they could prove it was safe. But by then my viral load
was very high and my CD4 had dropped. My doctor advised me to go onto Nevirapine
(Viramune) and Combivir (AZT/3TC).
“At first I was alright. I’d just started a new job as a residential
care worker with adolescent children but it wore me down to the ground. The
drugs made me ill. I got lipodystropy and looked as though I was pregnant.
I was putting weight on my tummy and boobs but losing it on my arms and legs.
“In 2002 I moved to London’s Chelsea and Westminster Hospital.
I felt the resources weren’t there in Surrey, even though the doctors
and nurses were fantastic. They didn’t know what was HIV-related and
what wasn’t.
“I’m with Dr Mark Nelson now and he’s the best. But I still
get terrible blackouts and feel awful much of the time. I’ve changed
to saquinavir/ritonavir and Truvada. I’ve had irritable bowel syndrome
for many years and get terrible sickness and diarrhoea; food goes through
me so quick it doesn’t seem to touch the sides.
“My worst fear is that my concentration is going and interfering with
my studies to become an accountant. I did my NVQ3 in Guildford but I’m
not functioning. I’m finding it difficult to do the homework and just
stare in class, miles away.
“I’m looking for a treatment which will allow me to get pregnant
again. I feel fine when I’m off the meds but I think I’m going
loopy. I’m unable to concentrate for long and have bad memory loss.”
Since receiving the UKC Hero Award, Sarah has been in and out of hospital
with Cushing’s Syndrome, a hormonal disorder caused by prolonged exposure
of the body's tissues to high levels of the hormone cortisol. It was caused
by a rare reaction between a steroid asthma inhaler and ritonavir. She is
recovering, but still suffering with rashes, swellings and stiffness in her
joints. It’s only until recently that Sarah has felt well enough again
to talk to us about her Hero Award and her battle with HIV.
Rubbing
shoulders with celebs
“I got involved with fundraising through my local HIV charity in Surrey.
And I spoke in front of 300 celebs at a big fundraiser for THT in Chelsea
and met people like Stephen Fry and Tracey Emin.
“I was very nervous about speaking in public, but I’ve given interviews
to newspapers and magazines, given talks in schools, and appeared on Channel
4 for Positively Women and Body and Soul.
“I’ve had a lot of positive feedback which makes me even more
determined to help use what I’ve gone through to help others. The reaction
I get in return is fantastic and makes me feel I’m doing a lot of good.
“The response at schools is fantastic. I didn’t get much sex education
at school and kids now are in the same position. No wonder HIV and STI rates
are shooting up.
We’re all involved…
“With my birthday being on 1 December it brings it home every year.
I’m celebrating and there are people all around the world suffering
and dying.
“But getting the UKC Hero Award was so good for my self-confidence.
I’d like to say a big thank you to the UKC and the readers of Positive
Nation who voted for me. I was overwhelmed to receive this award.
“It’s the support and encouragement of people like yourselves
that helps give me the strength to continue what I do. Together we make a
difference.”
The future is scary
“I’m starting volunteering for Positive Action in Aldershot, doing
the accounts, which helps with my studies. I’ve been with Matt (pictured
right) who’s a car mechanic, for over two years. He’s wonderful
and a supporting boyfriend. I’d love to have a baby and get my treatments
more stable. I need to know I can look after myself if I’m going to
have a child.
“I also want to keep going with the prevention work, to make use of
what I’ve been through. My way of making sense of it all is by saying
I got HIV for a reason; to help other people. I want to change the situation
where a lack of information means other people catch HIV.
“I feel optimistic but I’m still scared. My health is a roller
coaster. There’s no certainty or safety net, but I believe in fighting
on and making the best of what I’ve got without being a victim.
“I’m an ‘up’ person but still get depressed. The strength
of people around me has helped me pull myself together when I’ve had
to.
“HIV positive people can help each other as long as we all pull together.
I see being HIV positive as a positive thing rather than a negative. If I
die tomorrow I’ll feel I’ve done more than some do in their entire
lives.
“To your readers I’d say: be strong, help each other and use each
other as a network. And a big thank you to Positive Nation. It’s the
only HIV magazine that everybody reads and benefits from.”
