the new and the few
There were more than 6,400 people newly diagnosed with HIV in the UK last year, but only a fraction are using support services
Words Laurence Gibson
It is 1985. You have just received a positive HIV diagnosis. You are told
you have just a few years, or months, to live. There are no treatments but,
as if from nowhere, unwavering support arrives in the form of a multitude
of self-help organisations, buddies, and positive people groups. Cut to 2005.
You have just received a positive HIV diagnosis. What happens next? Is there
still the same quality of support to help people come to terms with their
condition? And, in this post-HAART era, do people need support at all?
To find out, PN attended a support group in Birmingham. Members had recently
undertaken a four-week training course for people recently diagnosed, led
by Tom Matthews of support group AB+. One of the key elements of this group
is that recently diagnosed people get to meet long-term survivors. This is
especially important for participants who originate from countries where HIV
still equals death.
Pre-HARRT fears persist
“Back in the 80s, when I caught HIV, it was viewed as a death sentence,”
explains Tom. “I felt cheated, more than anything, but never felt anger
or any negative emotions.
“The problem today is that people who are newly diagnosed are still
hearing HIV as a death sentence and this simply is not true,” he says,
with a frustrated look on his face.
“We have found, though, that these fears and anxieties can be easily
relieved, with little cost, simply by sharing with others and meeting new
positive people. Despite great advances in the science of HIV,
feelings of isolation persist. And I see it as my job to relieve them.”
Overcoming rejection
The AB+ group comprises a number of French-speaking Africans. We have changed
names because they come from a community still awash with stigma about HIV.
Pola is a 35-year-old from Zimbabwe, pretty and petite with a captivating
smile. She participated in the course shortly after her diagnosis in March
2000.
“I learned about medication,” she explains, “how to take
my pills, how important condom use is, about possible side effects. I also
realised I should remain cheerful and free.” No easy task for an HIV
positive African woman who lives with an HIV negative, Aids-phobic husband.
“He has not always been supportive,” Pola says as her friends
unanimously tut, then look away with disgust. “He will just lay next
to me in bed now, no sex. I do not get any kind of support from him. He sent
me away from home last week; he just turned me out onto the street.
“You see, the African community rejects HIV, and husbands will usually
leave women for being HIV positive; at least mine hasn’t done that.
But since being on the course, I have found support in AB+ and THT and made
many new friends there. I am so much happier and simply do not think about
HIV so much
these days.”
Conquering
fear
Achille Gnoahou, the African client support worker at THT Midlands in Birmingham,
is essential to this group. She was continually optimistic and bright, despite
the June heat.
“We get many calls from people feeling isolated. Most cannot talk about
it with the people they live with, so they come to us. I answer any queries
they have before a meeting, to help with their concerns. We do role play,
have discussions and play games to help people learn about HIV.”
The course seems to be working as participants are relaxed and confident about
themselves and their status.
A transformation
King is a strong, 49-year-old man, with broad shoulders and a gigantic frame.
“On his first day here he was stuck in the corner with a duffle coat
on and really poor body language,” says Tom, gazing at him proudly.
“And now look. He is sitting with his shoulders back and his shirt open!”
Eighteen months ago things were very different. “I felt despair, hopelessness,
like my world had ended. I thought I might die today, maybe, or tomorrow,”
explains King.
“But on the course I learned how HIV becomes Aids, about medications,
and now I am sure I will not die quickly. Tom was important to me, as he is
alive, well and proof that I might live.” From this small group of people
there was much optimism and joy; characteristics you may not expect from people
so recently diagnosed. Nevertheless, on a national scale things are not so
rosy. Last year, 6,403 new diagnoses were recorded, so you would think organisations
would be struggling to keep apace with demand. Yet, of the few courses for
the newly diagnosed that exist, many remain under-subscribed, suggesting people
are struggling to come to terms with their diagnosis alone, or just not being
reached.
Emotional
block
Geoffrey Henning, a founder of Crusaid, believes support in the 80s was very
different from today. “In those days people were dying all over the
place. Now, people still have to come to terms with the same issues, but this
time they are alone. Resources have declined dramatically in recent years
and there are far fewer voluntary organisations. The same level of emotional
support is no longer given even though stigma still exists.“The way
to overcome this is to meet others and share your thoughts. By keeping your
problems to yourself you will create an emotional block and prevent natural
self-healing.”
It’s good to talk
PN’s treatments editor, Robert Fieldhouse, is coordinating a new series
of workshops for the recently diagnosed. “It’s important for people
to learn about HIV, even if you do not need treatment right away, because
when that time comes you should be informed,” he explains. “At
our workshops you learn how HIV affects the immune system and what viral load
and CD4 counts are. You will also get the chance to meet long-term survivors
and other positive people, maybe for the first time.” Workshops are
in Manchester, Bournemouth and London.
THT
run a well-established workshop for the recently diagnosed at London Lighthouse.
Representative Christine Mead recommends people should ideally start a course
around a month after diagnosis. “This allows time for the shock to sink
in. It is quite a lot of information; the impact of your diagnosis, disclosure,
relationships and sex, how to cope, complimentary therapies and finances.”
If you have had a recent HIV positive diagnosis your head is probably spinning.
But it is important to know there is help out there. Pick up the phone and
join the forum nearest to you. Long-term survivors know the importance of
sharing your feelings and how that can contribute to better health. After
all, it’s good to talk.
• The next AB+ course runs for four weeks from 10 September. For information,
contact Jackie Moore on 0121 622 6471 or email enquiry@abplus.org
• Robert Fieldhouse and Laurence Gibson are touring with their newly
diagnosed workshop from September this year. See the advert on page 31 for
details
• George House Trust in Manchester is running a five-week newly diagnosed
course for gay men from 4 October. Contact Colin on 0161 274 4499
