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The Power of Hepatitis C Groups

[captionpix imgsrc=”http://lucindaporterrn.com/wp-content/uploads/2013/01/community.jpg” captiontext=”Image courtesy of David Castillo Dominici/ FreeDigitalPhotos.net”] It takes community to maintain a human. – Earon Davis

I am a huge believer in the value of groups for people living with hepatitis C. They may sound touchy-feely, but a good group empowers people to make choices about their health, by providing solid information and insight on how to live with their disease. The potential value of support groups is not just theoretical—there is evidence for it.

In the 1970’s and 80’s, Harvard-trained psychiatrist David Spiegel became interested in the emotional aspect of illness, specifically cancer. He could see the advantages of using the mind to assist people with aspects of their illness. However, Spiegel was uncomfortable with claims made in alternative medicine about the power of positive thinking.

Spiegel decided to put the issue of “mind-body” to rest by proving that giving positive emotional support would have no effect on the course of disease. He collected data from a research project conducted at Stanford, where Spiegel had co-facilitated a breast cancer support group.

The good news for us is that Spiegel was wrong; his research revealed the exact opposite.

“…Dr. Spiegel was troubled by the assertion that you one could “wish-away-your-illnesses.”…In the 1980’s his well-designed study of women with breast cancer shocked the medical community. Those in support groups lived on average twice as long as those who had not been in a group – an 18-month extension. (Published in The Lancet, 1989) However, the group model emphasized confronting cancer and death rather than “wishing it away.” The focus was on living better, not on living longer.”*

Somewhat stunned, Spiegel conducted further research and concluded:

1)     Support groups can improve quality of life – reduce anxiety and depression, increase coping skills, and help symptom management

2)     A thorough understanding of illness affects physical and psychosocial factors that affect response to treatment and resistance to disease progression

3)     The most effective techniques involve facing the illness directly

4)     There is no evidence that these techniques will cure an illness, but there is evidence that these may prolong life with cancer, heart disease, and other chronic diseases*

*fromDavid Spiegel Living Beyond Limits  Fawcett Columbine 1993

If you live in an area without a hepatitis C group, either start one or join an online group. There are many web-based hepatitis C  groups and chat rooms. The benefit of Internet groups is that there are so many of them that if you don’t like one group, you can easily find another. Another plus is that you don’t need to reveal your identity in order to participate and you can wear your pajamas to meetings.

Web-based groups have characteristics that may be both useful and harmful. They are more anonymous than in-person groups, so this makes it easier for people to say things that they may not say in face-to-face discussions. Open communication can foster genuine compassion, which is a good thing, but it can also lead people to say whatever is on their minds, without thinking it through, and that can lead to comments perceived as tactless or even hurtful.

Another problem with electronic conversations is that there is no body language. Communication is more than the spoken word; it involves gestures, facial expression and other body language, all of which are missing online. When we read words on a page, we hear the message in our own voice, adding meaning and interpretation from our own perspective that perhaps wasn’t intended by the “speaker.”

The immediacy of the Internet has an up and a downside. The upside is that you may get immediate feedback. The downside is that when we speak in a group, there is a delay in conversation as we listen to others. This helps us think before we speak. This delay doesn’t necessarily occur in chat rooms. It is easy to type out a quick response without thinking about it, and then hit the send key. Practice restraint if you are involved in an emotional conversation on the Internet. Don’t press the reply button for 24 hours, giving you a chance to review your message before sending it. You can also ask someone you trust to read what you wrote before you send it.

Here are some tips for locating a group:

Search for web-based groups on Facebook, YahooGroups, Google, etc. There are groups on Delphi Forums

Hepatitis C Support Group Handbook

Hepatitis C Support Group Lessons 

 

United States Department of Veterans Affairs Initiating and Maintaining a Hepatitis C Support Group: A How-To Program Guide

Here are links to organizations that list community-based hepatitis C groups:

HCV Advocate

Healthy Hepper

Hep C Challenge

 

 

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