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Dr. Joseph Burrascano's 2008 Lyme Disease Treatment Guidelines
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guidelines
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4 Issues You Will Encounter
When Leading an Illness Support Group
by Lisa Copen
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, does this mean that your illness support group meeting will run without a hitch? Unfortunately, despite all of your hard work, there are a few frustrations that you will likely encounter during those first few meetings. They are worth being aware of so that you are 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 place at the same time. One obvious reason is that when they feel ill, they are 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 are in physical pain.
What to do:
Hope for the best and prepare for the few. As a Christian organization, the HopeKeepers small group program founder says, "Although it's disheartening when just a couple of people show up, I know that God created that appointment. When I led a group once, just one person came, but we had the best conversation and she admitted that she was extremely shy and likely would not have even spoken if other people had attended the meeting."
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) Everyone seems to ignore your lesson plan.
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 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.
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 just complains about everything! Their relationships, the medical professionals, their illness-- the list is never ending.
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." Read "10 Ways to Make Your Illness Support Group Uplifting." 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 the Alligator (a rubber alligator) Award" 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 are feeling. Is there someone here who would like to share how she or he has dealt with these emotions?" If you are doing a lesson plan, say, "Since I want to get you all out of here on time, let’s move on to question six, and if someone has some encouragement for Jane, they can share that with her after our meeting." (Make sue that someone is you if no one else steps forward.)
(4) One person continually dominates the conversation; she takes over the meetings and completely disregards your plans or people who are trying 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 firm boundaries from the beginning. While it's vital that people are encouraged to communicate their frustrations, they are also responsible for respecting others in the group. They need to watch their language, the quantity of time they dominate a conversation, and how they comment on people's treatments or decisions.
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.
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 no personality conflicts arise. 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.
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