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I had my antibody-positive diagnosis
confirmed to me whilst flying over the Atlantic Ocean in 1987. It was
delivered to me by my husband, whom the hospital had informed rather than
me. The news was received with very little reaction, partly because it was
not a surprise, being a confirmation of an earlier test, but also because
I was entering the world of denial, a condition the medical profession
recognises, quite rightly, as a possible initial reaction to traumatic
news. It was the possibility that I might be declared positive that
prompted us to take off on a holiday to the States that we hadn't planned
and could not afford. It was my initiation into the very real world of
living with not only an assumed death sentence but the most feared and
discriminated against condition of our time. I had already been affected
by the HIV theory for two years with my husband's diagnosis. I naively
thought I understood, but I came to discover that there is nothing like
experiencing it for yourself.
From the start I found myself questioning the virus theory. There were so
many questions to be answered. First, why was it that my husband tested
positive in 1985 and I negative? We had been having unprotected sex for
the previous six years, blissfully unaware of a possible virus. A
haemophiliac, he was informed he had been given virus-contaminated blood
products possibly three years earlier. Why I eventually became positive is
too complex to go into detail here - suffice to say it was after seeking
medical advice and was the subject of a protracted legal battle. It was
suggested later that it may have been because of some medication I was
taking at the time which may have eroded the vaginal wall, leaving me
vulnerable to infection. It has also been suggested recently that it may
have been a positive due to a reaction to the medication itself. I am now
informed there are over sixty non-HIV conditions, including prolonged
stress-hormone reactions, that produce antibodies which in sufficient
levels turn HIV-antibody tests positive.
A few months ago I underwent an anonymous ELISA antibody test to test the
original results and the medication reaction theory. The result came back
positive. So whatever I tested positive for in 1987 was probably testing
positive again ten years later.
I did not seriously acknowledge my own diagnosis for the first six years
as I dealt with my husband's declining health. I watched helplessly as he
tried to cope with the fact that he had been told he only had a few years
to live. His suffering was compounded by the silence he had to endure. It
was only after his death in 1993 that I was able to concentrate on myself.
If there was anything I could learn from his experience it was not to
allow myself the same fate. I believe that he died not so much because he
had been infected by a virus that ultimately killed him, but through a
combination of factors which started immediately after he was diagnosed.
The impact of the diagnosis was so powerful it unleashed emotions that,
despite his resilience and courage, would test his spirit to breaking
point. He fell into decline because he was told there was no hope. He was
unable to cope because of a hostile society that rejected him through
ignorance and fear. He was diagnosed with Non-Hodgkin's Lymphoma after
developing a lump on his neck. he underwent surgery, radiotherapy and was
put on AZT, all while coping with the complications of haemophilia itself.
The lump disappeared. He was told there was no hope and that it would
return within 18 months. Since 1990 there has been published data
revealing Non-Hodgkinson's Lymphoma while taking AZT. Two years later he
began to develop problems in the stomach and bowel aera and Non-Hodgkin's
Lymphoma was diagnosed again. This time he was given chemotherapy. He was
particularly unhappy about the ever increasing amount of drugs he had to
take to counteract the side-effects of other drugs. Even though he was
frightened not to.
With his haemophilia, he had lived with a condition all his life parts of
which he knew more about than many of the medical professionals he came
into contact with. He developed a confidence in his own ability to judge
his health and any treatment he may have needed. Sadly, he lost that
ability over his HIV diagnosis. It was new to him, and so he delegated
more to the decision-making than he should have done.
Ten years on from my diagnosis, I am still questioning that accepted views
of «the» virus, and so to some am still «in denial» or even dangerous.
Remarkably, I have discovered that these terms are used to dismiss any
doubts about the virus theory that are raised. This has left me at times
isolated and even doubting myself. I don't know what the truth is and I
may never know, but I will continue to challenge anomalies, as I see them,
as well as question attitudes to health and healthcare, if I feel it
appropriate.
I have stopped going for regular medical check-ups as I felt it was
becoming a damaging process. The last time I spoke to an HIV consultant
was in 1995. He asked me how long I had had the virus. I replied that it
had been eight years since my positive antibody result and I felt
perfectly well. I also pointed out that I had not experienced any
significant illnesses during all that time. He said, «this is a long
term-condition.» I was appalled at his arrogance and callousness. I
decided that unless I desperately needed medical attention, I would not
return. How could he make such a remark - where was his evidence? The
virus theory has only been around for about 15 years or so and I am one of
the first batch of antibody positives, as is anyone who was diagnosed at
that time. Until it has been sufficiently long to prove what happens to
each one of us, we have only predictions. We must never lose sight of that
fact.
Whilst the arguments rage as to whether the virus exists or the tests are
valid, I must be aware of the factors that may play a part on my health. I
believe that there is a real danger of falling victim to the diagnosis and
all its psychological and social implications. So often people have said
to me that any one of us could get run over by a bus tomorrow», a not
impractical warning for me as I like to travel on my motorbike. However,
though often well-meaning, it shows a severe lack of understanding of the
psychological impact of a life-threatening diagnosis. I reply, «,that's
as may be, but you don't wake up in the middle of the night thinking about
it.» It is the psychological effect that I have become fascinated with
over the last few years and which I believe I have to tackle if I am to
continue to survive. I share the belief that if you tell someone they are
going to die, isolate them from society and try to suppress their sexual
and reproductive needs, then you may destroy their spirit and they are
likely to wither and die. I am fit and healthy after ten years, despite
what has happened to me and I intend to remain that way. I have often been
with other antibody-positive people who have not realised I am too,
rather, as some have told me, assuming I was there in a professional
capacity. It is heartening to see the reaction when they not only discover
that I am antibody-positive but that I have been diagnosed for so long, am
so fit and healthy, and more importantly am not taking and never have
taken any drug treatment. I am aware that it gives hope, particularly to
those newly diagnosed and I am beginning to realise that I should
publicise the fact more. I doubt the view that I am lucky or that it is
just a matter of time. I believe it is a combination of my approach - in
understanding that the mind, body and spirit are inextricably linked, and
my logical view of the notion of the virus and its relatively short and
politically charged history. I also have a healthy disrespect for the
medical establishment and the pharmaceutical companies, which has steered
me through many dangers. I am cynical of the drug treatments that are
emerging, in particular the medical evidence that is used to sell the
products. I do not feature in any of the trials because I am not in the
system. I am important evidence that is being ignored.
I have found solace in the last couple of years when I discovered
Continuum, and people with whom I have common views. I admire the work of
Continuum, and although I do not always follow the scientific arguments or
necessarily agree with those I do, I am grateful that someone is asking
the questions, as the nature of this work has far-reaching implications
not just for the HIV theory but for health issues concerning everyone.
I have come to cherish the experiences I have had through this enigmatic
diagnosis, and I intend to be around for many years to come. That is if
I'm not knocked off my bike by the proverbial bus in the meantime.
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