Author: John C. Martin
Author Date: 2/24/2003
Patients living with hepatitis can often feel alienated and alone.
Struggling with the treatment, side effects, psychological effects
and emotional problems associated with the disease is hard enough.
But many patients can often feel like friends and family are
avoiding them, leaving them to face their confrontations by
themselves.

That is a dark path that one hepatitis support group does not want
patients to wander down. "I have Hep C, and the lady that started
the group with me has had a liver transplant," says "Jean", the
leader of a Missouri support group. "When I was first diagnosed,
some people that me and my family knew did not want to be around us.
They were afraid they would contract the disease."

When Jean revealed her illness, it would prompt others to come
forward and admit they, too, had the disease, "but they were very
secretive about it," she explained.

Coping With Hepatitis Unknowns
That covert and evasive behavior that Jean sensed about hepatitis
spurred her and a friend to form a support group in her Missouri
community in hopes of quelling the fears and uncertainties about the
disease that her fellow patients might be facing.

Since its inception, the group has been meeting monthly. Members
learn of hepatitis from face-to-face meetings with experts in the
field: physicians, nurse practitioners, dietitians and local health
officials. And those members have plenty of questions. "Some want to
know if things they are experiencing are symptomatic of people that
have hepatitis," Jean explained. "Some people want to knowhow they
can find information. Any of the information we give them comes from
a reliable source such as Hepatitis Neighborhood, the American Liver
Foundation, the health department, or from the doctor's office."

Support groups like these can be valuable coping tools for people
with hepatitis. If patients have questions about their disease,
treatment side effects, dietary choices, or potential lifestyle
changes, they can meet with experts, or discuss these issues with
those who may be going through the same process.

"I feel like a support group is very good for people with hepatitis
and their families, or friends," Jean said. "I was fortunate to have
the support of my family during treatment, but there were times that
they didnt know what to do with me or how to help."

Benefits of Psychosocial Therapy
Experts who have studied the effects of support groups concur. They
cite clinical trials of breast cancer patients in support groups
that found such social interventions improved the patients quality
of life, reduced psychological symptoms, improved coping responses,
and reduced pain.(1)

Yet another study of the benefits of a support group for those with
chronic pain found similar benefits. "They had a significant
increase in functional ability and activity, and reported decreased
recourse to health professionals, particularly family physicians,"
wrote Malaysian scientists in a 1999 study. "This study indicates
that pain support groups can play a valuable role for people in
pain, assisting with support and rehabilitation, and meeting needs,
that health professionals are often not appropriate or able to
provide."(2)

While family support is essential for someone facing a hepatitis
diagnosis, support groups can offer an additional means of support
for those who need someone to talk to, said Jean. "It is very
important for a person going through the treatment to have the
support of their families," she said. "A support group can help the
whole family."

1. Lieberman MA et al. Electronic support groups for breast
carcinoma. Cancer 2003 Feb 15;97(4):920-5.

2. Subramaniam V, Stewart MW, Smith JF. The development and impact
of a chronic pain support group: a qualitative and quantitative
study. J Pain Symptom Manage 1999 May;17(5):376-83.