Fed up that a lot of what she read about
HIV was aimed solely at gay men, Joanne Walker decided to
speak up. Five years on since her diagnosis at just 18, she tells PN how she
coped and what it’s like living and loving with the virus in a small
Welsh town
Words David G Taylor
Images Francesco Teo
I
first suspected something was wrong when I went away with my family for a
few days. I became really ill with flu-like symptoms and found a lump. I thought,
“Oh my God, I’ve got cancer,” but because I was feeling
unwell I also thought I could be pregnant.
I got checked out at the Family Planning Clinic and explained to people there
that the guy I was seeing was originally from Ghana in Africa. A couple of
weeks earlier he’d taken the condom off during sex. I wasn’t pregnant,
but I had an STI, so they treated me for that. Then they suggested I take
an HIV test. I wanted to make sure everything was alright, so I went ahead.
The first test result came back unclear. The
clinic said I should have someone with me next time, so I ended up telling
my mum.
‘Good blood’
My boyfriend became angry when I spoke to him about having the test. He said:
“What do the doctors know?” Then I told him the clinic wanted
to see him. He later told me that his own doctor had given him some pills
and that he’d be fine in a couple of weeks. When my second test came
back positive, he said the doctors had got it wrong; that I was young and
had ‘good blood’. He said: “In my country we have witch
doctors that can sort anything out.” Then he said, “Well, what
is HIV anyway?” I asked him to come to the clinic with me, but he wouldn’t.
My doctor said he probably knew he had HIV all along. For a long time I didn’t
believe that he would have intentionally infected me. He’d always been
against using condoms, but I’d been brought up to have safer sex. He’d
put pressure on me, and said he was clean, but I insisted we use them. I always
think the best of people, but after a while I saw him out with other people
and found out he had a fiancé as well. I told her about the HIV and
she seemed quite concerned. I don’t know if she ever got tested. Soon
after that, he disappeared off the scene.
Like a soap opera storyline
For a long time I didn’t think about the test result. I shut it out
of my life. It didn’t seem real, like the storyline in a soap opera.
I couldn’t believe I caught HIV from not using a condom just the once.
That was my first sexual relationship. I was feeling depressed before the
HIV, but getting the diagnosis really overwhelmed me. I’d heard stories
of people prosecuting the person that had infected them, and I probably could
have done, but it was too late by then. Looking back, it seems bizarre. I
thought: “Why did I let him pressure me into sleeping with him? Why
did I even bother going out with him?” He was just a complete liar.
He used me, and I can’t change that now. When my result came back positive,
I was so shocked. Mum asked the clinic all the questions for me. They gave
me a worst-case scenario: that I might be alright for ten years, then another
ten years on medication. I thought: “God, I’m 18, and I’m
not going to live to be as old as my mum. I’ll never get married, and
I’ll never have kids.” Things I’d never even thought about
before. They did further tests, and my viral load was very low and stayed
that way for a number of years, so in some ways I was very lucky.
To treat or not to treat?
It’s been about five-and-a-half years since my diagnosis, and in the
last year things have started to change. I’ve noticed that I’m
quite tired. I get itchy skin and stomach problems, and the doctors don’t
know why. I’m not on medication, although they’ve told me I probably
should be. In the last year, my CD4 count has dropped to 210, and my viral
load has risen. I still don’t know if I’m going to take treatment.
I’ve always been against it because I think it’s going to have
a really big impact on me. I think: “Just let the HIV do what’s
it going to do.”
At the time my friends said things like, “God does things for a reason”
and “some good will come out of it.” So I look back on that and
think if God wants me alive then I’ll be alright without medication.
Then I went to a conference is Shrewsbury last month called ‘HIV: The
Next Decade’. It was interesting to hear doctors talking about the future
of medication. That for the first time made me think that I might reconsider,
just because of the illnesses I could get from not taking medication. It planted
a little seed, but I still don’t know if I will start the drugs or not.
Taking pills every day would be a constant reminder that I’m sick. I
even told my new boyfriend that I don’t want to feel like I’m
being kept alive by pills.
Family
affair
My doctor told me it was up to me if I told family and friends. I thought
about it for a couple of days. My parents are divorced, but I was watching
the film Final Destination with my dad one night. He suddenly said: ‘Doesn’t
it make you think how events can happen that can change your life in an instant?’
I was like, “Whoa! Has my mum said something?” I was really freaked
out by it, but I decided to tell him later that night. He was really shocked
and panicked a bit. Then he said, “We’ll fight this and we will
get through it.” I told my sister who was living with my dad, and also
my brother. Then my dad then took it out of my hands and told a lot of relatives
without thinking. I was left wondering who knew and who didn’t. Looking
back on it now, I wish a lot of them didn’t.
Bleach and sterilisers
My dad went to see my doctor, then he took me to see a specialist who said
that as my CD4 was OK, there wasn’t any point going on medication for
the time being. That seemed to reassure my dad, but it was stuff I already
knew. Soon after that though, he and my sister started freaking out. I don’t
know where they got their information from, but they thought they might catch
HIV from me. When I went over to stay one weekend, I found they’d bought
anti-bacterial cleaners and sterilising fluid. Every time I went to the bathroom
one of them would be in there afterwards bleaching and they removed all their
personal items like razors and toothbrushes. None of them would kiss or come
near me. It was a freaky time. They even made sure I had shoes and socks on
indoors in case I had any cuts or blisters that could get into the carpet.
It was just mad. It made me feel even more of an outsider. After speaking
to my doctor, I decided it was probably best to distance myself from them,
so I stayed away for a while.
A special kiss
After my first relationship with the guy that infected me, I thought I didn’t
ever want to be with a man again, and that no one would want me anyway. Then
I started going out with this guy. My Dad heard about it and said: ‘If
you don’t tell him, he will be told.’ He somehow got hold of my
phone and texted this guy saying: ‘Thanks for being so understanding
about Joanne.’ So when I eventually did tell him, that explained the
message he’d had. He went to get tested and it was negative, but things
didn’t really work out and the relationship ended.
Soon after, I met someone else, and told him from the start. He didn’t
know much about HIV, so I explained everything. He said: “Well, apart
from having safe sex we haven’t really got a problem then.” I
felt really lucky. It lasted for about a year, but I felt so uncertain about
my future, that I ended it. A few days later I went into a psychiatric unit
for about a week. I’d completely switched off. I wasn’t eating
or sleeping and I even self-harmed. I felt so negative about everything. My
boyfriend was upset over the break-up, so I wrote him long letters, which
kind of helped get everything out of my system. That’s when my brother
came to see me. We’d never been close, but when he gave me a kiss I
felt wanted. From there things began to pick up.
Speaking out
I decided to go public because a lot of what I was seeing and reading about
HIV was just aimed at gay men. When I hear about other people living with
HIV it inspires me, so I want to help too. The first thing I did was a documentary
for BBC3 and they followed me around for a long time. I was pretty depressed
at the time, so I didn’t think of the implications, but even though
I live in a small town, no one has recognised me. Next I did some radio, and
some stuff for channel Five and MTV. I feel obligated to speak out, because
not many people are. I do feel quite satisfied that I’ve done it though,
even if it just helps one person.
I still feel depressed. I feel like I’m not good enough, and I’m
ashamed that my family have had to go through this, even though they’re
really proud of me. Last year for World Aids Day I spoke at a service at Liverpool
Cathedral. I got a bit upset halfway through, but I had loads of people come
up to me afterwards to say it really touched them. That, for me, makes it
all worthwhile.
• If you’re a teenager living with or affected by HIV, call 020
7383 7678 or check out www.bodyandsoulcharity.org
for support
• StraightTalk is a London group for heterosexuals who regard themselves
as culturally European. The group meets twice a month; email str8@btinternet.com
for full details
