The healing journey:  benefits of retreats
By Patricia Fennell, Elizabeth Graham, Leonard Jason and Renee Taylor

Retreats can take many forms-from corporate planning to a spa vacation. But historically retreats have also offered individuals the opportunity for self-exploration. The need for regeneration and personal growth is increasing, as is evident by the approximate 1,400 spiritual centers across the country. Individuals with chronic fatigue syndrome (CFS) can reap some important benefits from retreats.

How a retreat can help
Albany Health Management Associates offers a three-day retreat to provide rest and rejuvenation for individuals with CFS. The retreat, known as "The Healing Journey," provides a combination of meditation, self-reflection, theatre arts, bodywork (including massage and gentle movement) and group seminars. The retreat is facilitated by pro-fessionals who are highly familiar with the issues faced by individuals with CFS, either because they have a chronic illness themselves, or because they have worked at length with persons with CFS (PWCs).

Coping through integration. The retreats typically start on Friday. After participants settle in, an overview of the Four-Phase Model of CFS is presented. The model is a comprehensive approach that focuses on the experience of living with chronic illness as well as treatment. It recognizes that illness causes trauma in an individual's life, and integrates that recognition into the treatment regime. The model also takes into account differences between acute and chronic conditions and emphasizes the practical integration of the illness experience into an individual's life in contrast to banking on the elusive "cure." The model provides a framework for the retreat that helps each participant begin to rewrite their own illness "story."

Stress reduction. Saturday morning begins with strategies to help reduce stress associated with chronic illness, including gentle movement or exercise, yoga and instruction in a variety of cog-nitive tools to help improve quality of life. In the early afternoon, participants have light massage and bodywork. The bodywork takes into account PWCs' sensitivity to certain stimuli, and it is designed to accommodate various pain levels. During unscheduled times, participants are encouraged to write in journals that are provided, walk the grounds or rest.

Theater arts. The use of theater arts is another interesting facet of the retreat. The Pentimento Playback Theater, an improvisational theater troupe, offers improvisational re-enactment of the "life with illness" experience. Retreat participants can request that certain situations or issues from their own life be played out. They can then witness the thoughts, feelings and experiences related to CFS and have them legitimated and affirmed. For example, at a participant's request, one actor played the part of chronic fatigue syndrome. His interpretation was both perceptive and humorous, and elicited many nods and smiles of recognition from the audience. The opportunity to "watch" the illness in action also gave the audience new insight into their own feelings about CFS.

Social interaction. Group process is an essential element of The Healing Journey. In part, the group provides a place for participants to be heard in a safe, non-judgmental and non-stigmatizing environment. It gives people with CFS a chance to come together and share their experiences, thereby reducing any feelings of estrangement and isolation they may experience in their day-to-day lives. Within this forum, individuals with CFS are able to disclose and express what life has been like for them during the illness, and they can release the typical emotions of a PWC that are often confusing and painful, but sometimes poignant and humorous. The process of listening to others with similar experiences helps to "normalize" thoughts and feelings associated with CFS.

Feedback from participants
The benefits of retreats are well-documented. They can foster a sense of community, create positive change and provide support for a variety of individuals facing a wide range of circumstances. For many individuals with CFS, retreats have been found to facilitate spirituality, communion with others and with nature, foster creative expression and provide a safe, non-judgmental environment in which to share feelings and experiences.

When 20 individuals who took part in "The Healing Journey" were asked to rate their experience on a scale of one to five, with one being most dissatisfied and five being the most satisfied, the average rating was 4.5. Most of the participants (95%) concluded that it was a positive experience and said that they would recommend the retreat to others. They gave the retreat high marks for being relevant and helpful. Participants reported that one of the most valuable things they gained was the advice given by experts and the oportunity to talk to others with challenges similar to their own.

"The retreat provides multidisciplinary treatment for a multifaceted syndrome," says Pat Fennell, Executive Director of Albany Health Management Associates. "CFS affects every part of life, and participants and health professionals say working through the wide range of challenges involved can make a big difference in day-to-day functioning."

 More support efforts needed 
"Retreats can be very beneficial, but more research is warranted," says Fennell. "We don't have enough information about the short- and long-term effects of these settings, as well as those who might benefit most from these experiences."

Fennell points out that there have been few coping programs for PWCs so far outside of The Healing Journey that have focused on rehabilitation and support as well as experience-sharing, although it is unclear why this is the case. Dr. Leonard Jason and his research team at DePaul University have developed a proposal for a comprehensive CFS Assessment and Treatment Center that would provide everything from assistance with daily chores to a hotline referral service for medical care, and are currently seeking funding. You can find the proposal at http://www.depaul.edu/~ljason/cfs/grants.html.

There is a need to strategize alternative ways of developing and maintaining retreats and other support-oriented programs, as they are currently not available to most people with this syndrome. Some individuals are too sick to leave the house, or may not be able to afford travel to a retreat. Unfortunately, there is no good way to capture at home the group interaction and professional facilitation that are such important parts of the retreat experience, but there are still things that you can do to start your own journey of self-exploration.

A journal is a good way to record your thoughts. You can share what you have written with family and friends to help them understand what you are going through. Meditation is another, less energy-intensive way to reduce stress and find peace.

Retreat sources
The Healing Journey retreat described in this article will be held again this year. For more information, call 518/782-0051 or e-mail to ahma2@worldnet.att.net. Young people with CFS may also want to look into the "Pajama Party Plus" weekend retreat for young women with CFS, which will be held on July 21-23, 2000. For more information, see the Bulletin Board on page 32.

An individual perspective
PWC Elisabeth Crean attended the November 1998 Healing Journey retreat in Albany, NY. Following are some of her thoughts about the value of the experience.

"I found the retreat beneficial in ways I didn’t expect. The evening with the improvisation theater group was wonderful. The actors listened intently to our stories, asked gentle questions to ferret out the core emotions, and then interpreted our experiences with compassion and insight. It was cathartic--not to mention fun--to have parts of our lives played back in skits. A brave few, myself included, participated in some of the reenactments, usually playing someone other than ourselves. Taking the roles of other people meant taking on their emotions and seeing CFS from their point of view.

Another unexpected benefit was becoming close, over just one weekend, to two people I’d never met before. Many of the participants were from the immediate Albany area and knew each other quite well already.

I attended the retreat by myself, not knowing anyone beforehand. The intensity fo the group discussions caught me a little off guard, and brought about a rush of feelings and ideas that I needed to share.

These two women and I hit it off right away. I found myself able to confide in them about a recent trauma—they listened with sensitivity and empathy, and let me know that it was okay to feel bad, that my wounds were still fresh. They reminded me that grieving comes before healing, and that’s what the year since the retreat has been about. I am forever grateful to them for their gift of understanding. For me, that was the healing essence of the retreat: to listen, and to be listened to.”