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Lisa J Copen

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4 Dilemmas Illness Support Group Leaders May Discover
By Lisa J Copen   
Rated "G" by the Author.
Last edited: Monday, August 04, 2008
Posted: Monday, August 04, 2008

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If you are discovering troubles in your illness support group, you are not alone. There are 4 major hurdles that may have you discouraged. But don’t give up! We’ve got some ideas.

After planning for your support group for weeks, or even months, it's time for your first meeting. You feel rather organized. You've prepared a proposal to start up a support group which was approved by an organization or church. You've put together a welcome folder for new members and you have scheduled your topic or speakers for coming months.

 

So, you're meeting is sure to run perfectly, Right? Unfortunately, all the plans in the world cannot cancel out a few unforeseen situations. Below are four of the aggravations you may experience during those first few meetings. Knowing what hurdles you may encounter can help you be prepared in advance.

 

(1) Only a couple of people attend.

 

How it feels: Disappointing. After all the work you put into it, not to mention the passion you feel about doing this, it seems like such a wasted to just have one or two people show up. Understand that this can be typical, especially at first, when everyone feels a bit intimidated. Try not to take it personally. To be honest, you are fighting an uphill battle in getting people to attend a chronic illness support group, because when people feel ill, they usually want to stay home, not go out and socialist. But when they are feeling well, they'd prefer to do something more fun then sit around and talk about their illness.

 

What to do: A good motto to remember is, "Hope for the best and prepare for the few." The founder of HopeKeepers, which is a Christian support group program for the chronically ill, agrees. "It can be such a disappointment when you feel God leading you to start a group and then only one person shows up. But from personal experience I can say that God knows what He is doing and may have planned it that way! The first time I had only one woman come to a HopeKeepers meeting, we ended up having an amazing conversation. Later she disclosed that she was extremely leery about attending and probably wouldn't have spoken at all if other people had been there."

 

Keep a summary of your lesson plan, even including the topics that were discussed. This way you can easily "replicate" the meeting another time with little preparation. Lastly, consider calling people and, without adding undo pressure, ask them what challenges are preventing them from coming? Is it transportation? Is it the time of day? How could you make it easier for more people to come?

 

(2) Your lesson plan is completely ignored.

 

How it feels: As though your ideas aren't interesting or inspiring enough to keep their attention. It can also feel as though no one appreciates all of the time you spent in preparation.

 

What to do: Allocate more than usual flexibility in your timeline at first and then add in more structure as the group meets and you begin to see how it flows. It's most likely that people are so excited to meet one another who understand what they experience living with daily chronic pain, that they just want to talk. You've provided a forum where the floodgates of pent up emotions are sure to spill over as soon as they realize they are allowed to be honest and vulnerable. It's impossible to hold up a book and point people back toward your lesson plan when one of the members is sobbing over her daughter who has told her mom her illness is "all in your head" and until she gets over it they are done. This type of situation can occur at any meeting, but it may be more frequent during the first month.

 

Talk openly with the group about your desire to have plenty of time available for people to share, but that you also want everyone to leave the meeting feeling refreshed. Regardless of what occurs during the meeting, you will be ending the time together with an inspiring article, scripture, poem, prayer, devotional, etc.

 

(3) Everyone complains about relationships, the medical professionals, their illness-everything.

 

How it feels: Like you are expected to manage a small riot. There are many built up emotions where people have experienced deeply wounded feelings, unjust consequences, and even medical errors. It can seem they want you to fix the situation or else they will talk incessantly about it to everyone.

 

What to do: Set up some basic guidelines before your first meeting if possible, and include the "venting guidelines." Read "10 Ways to Make Your Illness Support Group Uplifting."  Set a timer and allow everyone to have 60 seconds to share their most frustrating experience of the week. Start a contest with a prize for who handled their situation the best or most creatively. Or be silly and give an award for someone to take home for the week, like "Aggravated the Alligator Award" (a rubber alligator)

 

Group members should have a sense of freedom in sharing their concerns and annoyances, but be sure to include others in the conversation. If Jane can't seem to let go of a situation, add, "Jane, I know some of us can identify with what you are sharing. Can someone else tell us how she or he has dealt with the emotions that accompany a situation that was similar?" If you are doing a study you can say, "Since we want to have plenty of time at the end to share something uplifting, let's move on to question five. Jane, would it be okay if people could offer their encouragement after the meeting or maybe later this week with a phone call or email?"

 

(4) One person dominates the conversation and seems to take over the meetings, disregarding any plans you have or other's need to talk.

 

How it feels: Infuriating! After all your preparation it can be annoying to have someone override your entire meeting and take the group down a path that lacks the encouragement you want to provide. You justifiably could be concerned about her impact on the group and how many people she could scare away.

 

What to do: Set boundaries at the beginning. While it's vital that people are allowed to communicate their disappointments, it's important that they also respect group members. They must watch their language, be aware of the amount of time they are talking, be respectful in the decisions others make about their medical treatments and more.

 

One of the best ways to approach this is to include guidelines about how the group will function that are given to all new members. If the person who dominates the conversations doesn't understand your simple comments of "Let's see how other people feel" then talk to her one-on-one. Politely go over the guidelines. You may want to put her in charge of a part of the meeting where she can have a leadership role. Having the guidelines to refer to will make it feel less of a personal attack than if you are simply correcting her behavior.

 

Lastly, don't be too hard on yourself. You will learn as you go. Facilitating a support group is often assumed to be a simple undertaking. It's a myth that all one does is announce a meeting, lots of people attend, everyone shares and supports one another, and not personality conflicts arrive. That is impossible.

 

It takes a special person who can communicate with others effectively. One who can gently guide people in the direction you wish them to go, so that the group grows rather than becomes a complaint session. A leader must be able to offer compassion, but also set boundaries and even diffuse anger. As situations arise, talk to other leaders for ideas and support. Keep in mind that no leader ever feels one-hundred percent capable. A willingness to learn and listen is at the top of the list of leadership qualities.

 

Instant download of 200 Ways to Encourage a Chronically Ill Friend from "Beyond Casseroles" by Lisa Copen when you <a target="_blank" href="http://www.restministries.org/res-ezine_ill.htm">signup for HopeNotes</a> invisible illness ezine at Rest Ministries. Lisa is the founder of <a target="_blank" href="http://www.restministries.org">Invisible Illness Awareness</a>

Web Site: Invisible Illness Awareness Week



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