Importance of Support groups

This came from


Samantha May

Head of Patient Support Services



The Hepatitis C Trust

27 Crosby Row,

London SE1 3YD

Telephone: 020 7089 6220

Fax: 020 7089 6201



Helpline: 0845 223 4424

(from 10.30 - 16.30pm Monday to Friday, all calls are confidential)

Web: www.hepctrust.org.uk

support groups helped this
man was and he was able to turn the experience
into something positive…
“There have been many situations throughout my
lifetime where the experiences and challenges
I’ve endured have, in essence, given me a steely
grit and determination. My core values and
principles have been sustained without any
hidden agenda or motive, which has enabled me
to withstand whatever life has thrown at me thus
far. I believe I am a compassionate emotional
man with a deep sense of understanding and
consideration unto others, who is always ready
to listen and give what I am able to give. I have
integrity and dignity, which I hope gives me some
sort of semblance of normality within the
chaotic, selfish, lonely and transient world we all
live in today.
Through all this, my recent experience of
undergoing a forty-eight week period of
interferon and ribavarin is what I can only
describe as the most horrendous period of my
life so far. Now however, three months on after
treatment, I can quite categorically say I feel
privileged to have had the experience.
Therefore, I think and hope that through all my
inner struggles with life’s toils and torments in
trying to rid myself of certain habits and
crutches, this last year has been a cathartic
turning point in my life and also one of
perspective and rational recognition.
As a coinfected HIV positive gay man, the
treatment itself disempowered me from
effectively managing and caring for myself. It left
me not being able to go out and integrate into
society, not able to perform the most mundane
of daily tasks where an element of interaction is
involved, which, I think, we all would normally
take for granted.
Living on my own as I do, with no reliable support
network around me, being warehoused away at
the top of a noisy tower block in London, with no
real friends to draw support from, and also being
estranged from most of my family, I was left
confined, withdrawn, sick, lonely and isolated,
contemplating suicide on a number of occasions.
For me, the unrelenting insomnia along with the
numerous neurological and physical side effects
was quite possibly one of the most frightening,
frustrating and debilitating experiences that
most people could anticipate in their lifetime.
For the duration of the treatment, and for some
time after, I was unable to get one moment of
sleep, not even with the use of fairly high doses
of prescribed sleeping pills. My sleeplessness
was much exacerbated by the nightly continuum
of itching crawling skin. It soon became
apparent that the various sleeping pills my
consultant prescribed me would be utterly futile
in an attempt to send me to a place which
should be natural to us all: sleep. The general
effect the treatment had on me was what I can
only describe as a wired up, toxic, noxious
feeling, leaving me disorientated and confused.
The days and the nights became one, with a
feeling of endless and perpetual listlessness
and doom. Soon I felt my whole being as a living
form was what I can only describe as a state of
suspended animation, not knowing what was
real and what was not.
I don’t think I was ever truly aware before of just
how terribly lonely and broken a man I’d become
over the years. It was not until I embarked on
this treatment journey that I realised the stigma
and the marginalisation I felt of being a
coinfected gay man with feelings of being on the
periphery of life, within the structures of the
society we live in; not being aware of, or not
knowing of any information readily available on
this condition. Through this long period of
feeling most unwell, reflecting upon my life so far
has cautiously forced me to take tentative steps
to help change my life around.
At first I felt relatively resistant to the idea of
taking antidepressants. However, I did
acknowledge that I needed help so I was keen to
speak to someone who works in the field of
mental health. As the treatment progressed, the
darkest and deepest depression set in. It
manifested all my repressed feelings, placing an
emotive traumatic magnifying glass upon low
self-esteem issues, self abuse, unresolved
anger towards my family, shattered aspirations
and a general feeling of emptiness and despair.
There have been many personal and social
ramifications from the events of my diagnosis
during this last year or so. It just seemed to be
a case of a continuous run of bad luck, with a
threat from the council that I would lose my
home as I ran into arrears with my rent. I was
unable to pay it as coincidentally I had a review
of the benefit I was receiving at the same time
as I received the new diagnosis and new
treatment. The DWP decided to stop my benefit
so this then had a knock-on effect. It was an
utterly chaotic shambles. It was very stressful
trying to deal with it all on my own, undergoing
such profound treatment without any community
support or access to a social worker being
available to me any more within the borough
where I live. This had a tremendous impact upon
my life; this in turn compounded my situation
further.
Eventually I conceded the fact that I couldn’t
cope with it all any more and was prescribed ever
increasing doses of antidepressants and
sleeping pills, which I’m still on today, three
months after my treatment has finished.
Nevertheless, I’m feeling a whole lot better than
I have been, and I am hopeful for the future.
In realising that I was at a very serious crisis
point in my life, not only with the treatment but
also the fact that I was approaching middle age,
mixed with the feelings of loss and identity, and
a notion that I felt left behind in society, unsure
Please remember that, if you, your friends or your families have ANY concern about anything
relating to your hep C, then we are here to help!
0845 223 4424.
All calls to our Helpline are confidential and are charged
at 3.5p per minute (though calls from mobiles may be more).
We are a member of the Helpliness Association
of the way forward, I conceded that I needed a
lot more help in a proactive way. In doing so, it
would be something quite radical, which I’d never
anticipated doing in my life before.
I found the confidence to contact The Hepatitis C
Trust. Immediately, I felt at ease by the voice on
the phone – it was kind, encouraging and
sympathetic. The woman that answered left me
with an innate feeling of ease and motivation,
and it was reassuring to be told that there were
other people with the same diagnosis and
treatment worries and concerns as myself. My
details were taken and I was then called back by
Mirek who runs the support group for coinfected
gay men. He was calming and attentive and
since then I have been attending since
November of last year. I lost any reticence or
hesitation I had in attending something which
would normally have been completely alien to
me. The time had come, and I was ready.
I went along to the first meeting, with absolutely
no expectations. The welcome was warm,
friendly and relaxed, with a safe and informal
setting. The facilitator Mirek (assisted by Denis)
both had a calming, attentive and encouraging
manner about them. It has without doubt helped
me in a way I would never have imagined
possible, a place where men experiencing
similar issues and struggles can come together
and share their feelings and emotions in a
confidential and considerate way.
From my point of view the dynamics are such
within the group that each meeting is very
different from the last. It is almost certainly
challenging and demanding, depending on how
much you’re prepared to give of yourself. It can,
however, be thought-provoking and raw. It is
also uplifting, informative and inspiring. I
personally haven’t felt overwhelmed once,
curiously I feel that even though I’ve only known
these members a very short time, I consider
them as friends. These are people all of whom
have a very unique story to tell, they have
listened to the raw state of many of my fears,
follies, absurdities and insecurities. I’ve never
met these incredible individuals before in my
life, but because we are all at the same staging
point, I am demonstrative enough to be
completely honest and show my vulnerable side
for the first time in my life. This is something
I’ve never felt capable of showing before
because of the shallow and vacuous circles I’ve
mixed in during my life.
Happily I’m still with the ‘program’, as they say.
So now, with some guidance, awareness and
retrospective thought, with a will to rush to live
rather than a will to live to rush, hopefully all my
inner torments and struggles will diminish. Only
then will I become a fully fledged and integrated
member of society, with less negative
addictions. Thus, life will go on!”