Business woman and playwright Anita
Sullivan wrote HIV fact sheets for her friends and family from
her hospital bed after a shock HIV diagnosis
I’m
36, married, a yellow-belt at Karate, director of a small business with a
second career as a playwright. I’m a healthy, forward-thinking kind
of person. I’ve been HIV positive for about ten years.
I thought carefully about doing this: disclosing my status in a national magazine.
There’s stigma and ignorance out there, it’s true. But the best
way of countering this is to be bold, to say: ‘Hello, I’m here,
I’m positive and I’m OK’. Why should I be ashamed? HIV is
a medical condition, not a dirty secret. People get uncomfortable about HIV
because it’s usually transmitted sexually. Well, so is life itself.
By keeping quiet, I seemed to be agreeing that HIV is somehow shameful. So
I am putting my money where my mouth is: real name, photo, warts and all.
Easy Street
Before you say: “OK that’s easy for her...” Let me tell
my story. It starts pleasantly enough, in the mid-nineties. I was working
full time as a designer for a training company. I’d not long got married,
moved house and bought a very cute baby rabbit. I was putting a lot of energy
into theatre and all was going well. Or so I thought.
Inexplicably, I started to suffer from depression; was tired and had a cough
that wouldn’t go away. My GP prescribed cough medicine. On top of my
nine-to-five job, I was working evenings and weekends on a community play
with 60 participants. It was a lot to organise and the show was pretty physical.
The cold got worse. I had a fever and was having trouble breathing. I wasn’t
able to eat or sleep and couldn’t climb stairs. I thought: “OK.
This probably isn’t a cold.” I booked another doctor’s appointment
but never made it. I collapsed and my husband called an ambulance.
It took the hospital almost a month to diagnose me. They didn’t perceive
me as at risk from HIV so no one, including me, thought to test for it. One
nurse later said: “If you’d been a gay man, we’d have stuck
a needle in you soon as you walked in the door.”
Sleeping Beauty
During that month on the chest ward I acquired four additional infections
and my condition deteriorated. I ended up on a ventilator in intensive care.
Friends and family came to say goodbye. My last words to my husband before
they put me under were “wake me with a kiss in a 100 years”. Pretty
poetic, but I think the drugs should take most of the credit. I was unconscious
when my results came back so the hospital had to tell my husband my diagnosis
instead of me. My parents guessed (they’d looked up my symptoms on the
internet). And all hell broke loose, I’m told.
Evidently this has a happy ending. One way or another HIV knocked me out for
about a year. But I did get better. And I was really happy to be alive.
So how did a nice, well-educated, moderately privileged woman like me end
up with HIV? And why didn’t I know I was positive? Well, I took risks
with unprotected sex. I challenge you to find someone who hasn’t. My
risks were negotiated: part of long-term relationships with people I trusted.
But they were still risks. I’d also had a negative test five years before
my diagnosis, so I thought I was OK. Turns out I was wrong.
Happy Christmas, and...
In her distress, my poor mother had already told all my family, most of her
friends, her neighbours, and random strangers at the post-office, that her
daughter had Aids. I was pretty much ‘out’ from day one, so I
had to make sure people understood what that meant. I put together a little
fact sheet about HIV for friends and family telling them about the illness,
how it is transmitted and why they weren’t at risk from me. I then contacted
my ex-partners, which I did personally from my bed in the Elton John Unit,
at the same time as sending out my Christmas cards. My husband, thankfully,
tested negative and remains so.
Everyone, without exception, has stuck by me. They treat me the same way as
always, except for reminding me to take my drugs and over-feeding me at every
opportunity. They’ve even stopped saying “Gosh, you look well,”
as if this is a big surprise. Or asking “How are you?” in that
quiet, serious tone.
I’m doing well. My CD4 count is enviably high and my viral load ‘undetectable’.
I smoke, I drink, I say ‘yes’ to most things (within reason) and
I work, running my training consultancy. I can turn in an 80 hour week with
no adverse effects apart from being grumpy as hell. I write two or three plays
a year for radio and theatre and my research has taken me from Mauritius to
Moscow. I’m moving to rural France for six months to work on a couple
of commissions. I haven’t taken any time off for an HIV-related illness
in several years. I know I’m lucky.
Along the way I’ve had a few problems with drug side-effects. Lipodystrophy
turned me into a cartoon version of myself for a year or two. I had a rough
few weeks adjusting to a new medication (my stomach went wrong: I’ll
spare you the details). But compared to what I’ve been through, all
this is manageable, and I find the bizarre Sustiva dreams pretty entertaining.
Last night I had a good one about a tree-climbing crocodile.
Working
out
At work, I take my medication brazenly, often in the middle of meetings. No
one has ever asked what they are for. People are far too polite, although
obviously curious. I’m sort of half ‘out’ as positive in
the workplace. I generally tell people only after they have worked with me
for a while and have seen what I am capable of. It isn’t something I
immediately announce to new clients. I work in a competitive environment where
it could be dangerous for me to be perceived as ‘sick’ and therefore
potentially unreliable.
Interestingly, this attitude is only apparent in my corporate life. In the
theatre world there is a better understanding of HIV, and indeed of other
‘disabilities’, and a lot less prejudice. I got an opportunity
to write a play (loosely) about my experiences for Radio 4, broadcast on World
Aids Day 2003 and 2004. A theatre version called ‘Pricked’ went
up to the Edinburgh Festival in 2005.
I’m fortunate I live in a town with excellent HIV services and my doctor
is brilliant. But I sometimes feel I am not a typical service user. I look
at the people in the waiting room and seldom see anyone like me - in fact,
I very rarely see anyone female. The posters on the walls talk about gay men’s
health issues or advertise benefits advice services and needle exchanges.
I’m very glad those services are there for other people, but often feel
as if I got the wrong illness. I’ve turned to other sources of support:
websites like EPF which supports people with HIV in the workplace and of course
Postively Women and Positive Nation.
We are now covered by the Disability Discrimination Act although at the moment
I don’t feel the term ‘disabled’ applies to me. In practical
terms, it would be very difficult for me as a freelance employee to legally
prove I didn’t get a contract because of my status. So I’m not
sure how much protection the act actually gives me. But the way I earn a living
and my state of health may change in the future, so I am glad the protection
is there.
Invisible illness
Ironically, the time when I needed most support was when I didn’t know
I needed it: before I was diagnosed. Now, my concerns are pretty similar to
my HIV negative friends: trying to juggle the work/life balance and thinking
about sorting out my pension. I’ve started listening to my body-clock
with interest as I am of that certain age when it’s due to start ticking.
Having a baby would be my most challenging creative project yet.
I’ve pretty much seen the worst HIV can do, and I’m not afraid.
To be honest, I don’t think about it that much and nor do my family,
friends and colleagues. I’m me: a playwright, a training consultant,
a rabbit-owner and many other things first. HIV is part of me and always will
be, but just a small part. Microscopic, in fact. To look at me now, you wouldn’t
know it was there.
