This is a guest article by Lisa Copen, the founder of Rest Ministries, and is in honor of National Invisible Chronic Illness Awareness Week.  This year, this annual event occurs this week, September 8-14, 2008.  It’s a time to increase awareness of chronic, “invisible” illnesses like pain.  Be sure to check out all the wonderful offerings at their Invisible Illness site.

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’ve scheduled your topic or speakers for coming months.

So, your meeting is sure to run perfectly, right?  Unfortunately, all the plans in the world can’t cancel out a few unforeseen situations.  Below are 4 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. Few people attend.
How it feels: Disheartening.  After putting in so much of your personal time (despite your own illness), it can be very disappointing to feel like dozens of people aren’t benefiting from all of your hard work and passion.  Recognize that a low turnout is typical and not something to be taken personally.  It can be extremely difficult to organize people who are ill to show up at the same time and place.  One obvious reason is that when they feel ill, they’re less likely to leave their home and go socialize with others.  Just talking can be physically draining.  And when they feel well, the last thing they may want to do is sit around and talk about the days they’re in physical pain.

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 an outline of your lesson, and include what topics were discussed.  Then you can easily “repeat” the meeting with little preparation.  And it may not hurt to call people, and without pressuring them, ask if there is anything you can do to make it easier for them to attend.  For example, do they need a ride?  What is their best time of day for a meeting?

2. No one wants to follow your lesson plan.
How it feels: You may be quick to assume that your ideas are just not interesting or helpful enough for people’s circumstances.  You may even feel a touch of anger that people don’t appreciate the time you spent preparing.

What to do: Allocate flexibility at the first few meetings and let people know that you will add more structure as the group gets more comfortable.  Most likely, it’s not that people don’t like your plans.  They are just free from anxiety, excited to be able to share experiences with others who understand chronic illness.  By just assembling people together in one room, floodgates of emotions that people have held back for years can break forth.  If you’ve been through it, you know it’s pretty much impossible to hold up a book and a lesson plan when a member is in tears over the end of her marriage, for which she blames her illness.  Although these situations can happen at any meeting, they may be more frequent at the beginning or with first-time visitors.

Share with your new friends about your desire for the group to be a safe place where people can share their deepest fears and challenges, but that you also want to make sure everyone leaves feeling more refreshed than when they came.  Tell them you respect their time and want to get them out on time (and they can talk afterwards if they wish).  Explain that to do so, there will be times when you move from a very emotional setting towards closing the meeting with an uplifting article, scripture, poem, prayer, devotional, etc.

3. Everyone complains!  About relationships, medical professionals, their illness - everything!
How it feels: Like you are expected to fix the entire world in an hour or at least listen to every complaint they may have.  You will find that people have years of emotions buried in their hearts that have wounded them deeply.  Hearing cruel words, having wounded feelings, facing unjust consequences, and even coping with severe medical errors are all normal parts of living with illness.  For the group leader, you can be left wondering what to do if you can’t fix the problem.  You want to show compassion, but need to keep this group on the path of encouragement and support, and not a downward spiral.

What to do: Write up some guidelines, before your first meeting if possible, and include the “venting guidelines.”  (There are many resources for group leaders at the Rest Ministries website.)  One practical tool is to set a timer and allow everyone to have 60 seconds to share their most frustrating experience of the week.  Brainstorm about a contest your group could have that would bring some humor to the venting.  For example, the person who handled their irksome situation the best or most creatively could win the “Aggravated Alligator Award” (a rubber alligator) to take home for the week.

Don’t forget to include others in the conversation.  For example, say, “Jane, some of us can really relate to what you’re feeling.  Is there someone here who would like to share how she or he has dealt with these emotions?”  If you’re doing a lesson plan, say, “Since I want to get you all out of here on time, lets move on to question 6, and if someone has some encouragement for Jane, they can share that with her after our meeting.”  (Make sure that someone is you if no one else steps forward.)

4. One person dominates the conversation and seems to take over the meetings, disregarding any plans you have or others’ need to talk.
How it feels: Annoying!  After all your preparation, it can be exasperating to have someone else take over the dominant role and lead the meeting down a path that you see will lack encouragement for others.  You may also be worried that this person’s actions will scare away newcomers.

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’re talking, be respectful in the decisions others make about their medical treatments and more.

Put together some simple guidelines at the beginning that you hand out to new members in a welcome folder.  Then if the person dominating the meetings doesn’t get your hints, speak with her privately.  You may also want to put her in charge of a certain part of the meeting so she can have a designated time to talk and be in a leadership position.  When situations like this occur, people can be gently reminded of the guidelines they received when they first joined the group.  It won’t feel quite as personal as you correcting their behavior.

In conclusion
Understand that leading an illness support group is not the uncomplicated task it is often assumed to be.  Sometimes we think of it as simply letting people know when you’re getting together to share and support one another, loads of people show up, and everyone’s personalities click perfectly.  Don’t be alarmed if it doesn’t work this way.

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 100% capable.  A willingness to learn and listen is at the top of the list of leadership qualities.

Sign up to receive the Invisible Illness Week Updates and receive a free instant download of 200 Ways to Encourage a Chronically Ill Friend from “Beyond Casseroles.”

I found Lisa’s thoughts and advice really valuable.  I’ve been offering 8-week Coping with Pain groups for many years, which I feel are one of the most valuable treatments I offer, but it takes a lot of work and attention to be sure they’re valuable to the patients who attend.   Thanks so much, Lisa, for your article!  ~HtCwP

Posts this week at How to Cope with Pain in honor of the week:

• 10 Ways “Invisible” Can Be Funny
• Learning to Accept Help