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Herpes HELP Groups
What is a Herpes HELP Group? A Herpes HELP group is
a self-help group, an information resource, and a support provider. Sharing
experiences and successes with others can take some of the weight off your
shoulders. And your perspective can also help others. That's what you can find
at a local HELP support group meeting.
Diagnosis: Herpes Simplex Virus. What Now?
Regardless of the sympathy we may or may not
received from our physicians, family, lovers and friends, the ultimate burden of
herpes falls on the people who have it. It can be a difficult load to bear,
especially immediately following diagnosis, when feelings of isolation,
depression, and fear are at their height.
In 1980, the American Social Health Association
(ASHA) addressed those very issues by sponsoring the information of herpes
self-help groups across the country. Approximately 80 HELP Groups in as many
cities are available to people affected by the herpes simplex virus. HELP Groups
provide a safe confidential environment in which to obtain accurate information
and share experiences with others who have t his viral infection.
All too often, people with herpes feel that they
must "go it alone." Through the HELP Group meetings, however, many individuals
find that discussing herpes with others can make things easier emotionally,
mentally, and sometimes physically.
Walking Through the Door: What to Expect
HELP Group meetings vary in many respects from city
to city. With t he emphasis on self-help, the demeanor of the Group will often
depend on the people involved. The meeting may start with the introduction of a
topic for discussion, or with a question like, "How's everybody doing?" There
are three basic concepts, however, that will be consistent from one group to the
next.
1. Confidentiality - Complete
confidentiality is a priority at any ASHA-affiliated HELP Group. Most Groups
operate on a first-name-only basis. Although many Groups have mailing lists for
newsletters or to announce special events, those lists are never used for
purposes outside the activities of the HELP Group. Signing up on a mailing list,
giving out your last name, or actively participating in a discussion isn't
mandatory. How much you choose to disclose or participate is completely up to
you.
2. Accurate Information - ASHA's Herpes
Resource Center (HRC) sponsors scientific research, has access to the latest
medical information, and makes that information available to the HELP Groups.
The number or unreliable claims regarding cures and treatments increases every
year. Newspapers and other media often report inaccurate facts. Even physicians
may not have access to the latest findings. The HELP Groups offer an excellent
source for accurate, up-to-date information.
3. Medical Advisor - Each HELP Group has a
medical professional available for addressing specific questions and verifying
information. In some Groups, the medical advisor attends every meeting; in
others, the advisor addresses the Group and its questions every few months. The
medical advisor might be an internist, a general practitioner, a gynecologist, a
dermatologist, a psychologist, a nurse, or a physician assistant. Many medical
advisors can refer HELP Group participants to a local health care provider
knowledgeable about herpes.
Beyond these three basic elements, the character of
the local HELP Group will vary depending on the number of participants, the
energy of the volunteers, the size of the community, and the style and
dedication of the HELP Group Coordinator.
Meetings are often held in health care centers,
library meeting rooms, hospitals, and churches. The Group may meet once a month,
twice a month, or more - rarely less. Those who coordinate the HELP Group and
its activities receive regular bulletins from the HRC and follow ASHA guidelines
for confidentiality, procedures, and protocol.
What's to Talk About and Why?
Even for the most well-adjusted, self-confident
person, a herpes diagnosis can result in a crisis. Feelings range from denial or
depression to isolation and intense anger. Some people experience feelings of
extreme anger or resentment toward the person who may have infected them. Others
feel a sense of loss -- the loss of real or imagined future romances or sexual
freedom. At HELP Group meetings, participants explore those feelings and discuss
ways of coming to terms with them. No topic is unapproachable. Sharing
experience and successes with others can take some of the weight off your
shoulders. And your perspective also can help others.
What if you've had Herpes for a while and feel
pretty well adjusted?
Attending a HELP Group can increase awareness of
issues that may be affecting your lifestyle or relationships. Sometimes others
can offer a different perspective on living with herpes. And because herpes
isn't a frequent topic of discussion outside of the HELP Groups, people who have
lived with the virus for a while often surprise themselves by talking about it
and sharing their experiences. Articulating feeling can produce greater clarity,
stronger opinions, and ideas different from those one might expect.
What should I NOT expect from a HELP Group?
A HELP Group's focus is to assist people with
herpes in adjusting to the virus and moving forward with their lives. Although
the discussions and activities sponsored by a Group may foster a social feeling,
the idea is not to restrict social activity only to other people with herpes: If
anything, the idea is to become more comfortable in any social situation.
A HELP Group is not a dating service. However, many
Groups sponsor social activities in addition to HELP meetings.
HELP Groups focus on self-help. You help yourself.
You decide on the relevance of any advice or opinion expressed in the Group.
You're the boss. Unlike 12-step groups or organizations that assign sponsors to
new participants, HELP Groups insist that the power of choice and adjustment be
left with the individual.
Finally, HELP Groups are not affiliated with any
religious or political organizations, regardless of where the Group meets. Some
Groups are co-sponsored by other organizations, but these affiliations in no way
advance the sponsoring agency's agenda - be it political, religious, social,
commercial, or anything else.
Every individual experiences herpes differently,
but the virus itself does not discriminate. People from all walks of life
contract herpes. It has nothing to do with morality, intelligence, or
socio-economic status. With t hat in mind, a HELP Group's only purpose is to
assist individuals in choosing how to best live with the herpes simplex virus. A
HELP Group is a place to talk, listen, and move forward. If you have herpes or
are affected by the virus in some way, we invite you to join us.
National Herpes HELP and Online Herpes
Support Groups
This information is provided
strictly for educational and personal use only. If you are a healthcare provider
interested in educational brochures to distribute to your patients with
information like this please contact the National Herpes Hotline at (919)
361-8488. You can also call and order a free information packet about herpes OR
any other STD.
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