Taking Charge of your Group
Julie and Rosalie know how much work, time and energy is spent running a support group for
FMS patients. We started the first FMS support group in Minneapolis, Minnesota at Abbott
Northwestern Hospital in 1991 with Jenny Fransen, RN. We are trained Arthritis foundation
leaders as well. Our training was helpful, but we learned most about running a group while on
“the job.” Even though we do not run a support group anymore, our work brings us into contact
with groups we teach in our educational classes, and at work where we run groups on a variety
of topics. Rosalie’s past teaching experience and clinical work with psychological issues has also
helped us to learn techniques for dealing with both large and small groups.
We know how easily one can become burned out by the demands of this volunteer effort. We
would like to supply support group leaders with information which may help better run an
effective group. Suggestions from fibromyalgia support group leaders have also been included.
We also asked leaders to let us know what has not worked for them and have included those
comments as well. It is important to know the good, the bad and the ugly so you will avoid
making mistakes.
We also are including information on how to use this book with your group. We have taken topics
from various chapters and share ideas for activities and discussion at group meetings. Topics
and activities for discussion when you do not have a speaker are also included, as that seems to
be an area for which leaders need additional ideas.
Important points to note for groups in general:
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People will relate more positively in a group setting if they feel they are part of the group. It takes time for people to feel comfortable with a group. |
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Some people are shy and need help in meeting others and in opening up. |
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Groups need a leader who can lead. That is: the leader must be in control in a positive way. Leaders should be able to handle difficult group members in a non- confrontive, yet assertive way. |
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Groups need direction: always have a topic, a speaker, or an activity planned. This will keep your group from getting out of hand and will make your life easier. It will be helpful to have back-up activities planned when your speaker cancels. We offer some suggestions for you to keep in your arsenal of plans for use when speakers cancel, particularly at the last minute. |
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Allowing group members to be a part of the group by giving them defined jobs that they enjoy performing will make your group more cohesive and will also remove some of the pressure from the leader by delegating tasks. |
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Allow group members to determine topics they would like to hear or activities they would enjoy doing. You will never know unless you ask members what their preferences are. Hand out surveys or suggestion cards for topics. See if members will help set up speakers or activities they would enjoy. |
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The more people you can get to help you, the less pressured the leader will feel. Remember that 10% of the people in any group do 90% of the work. |
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Your group should have a focus, mission and goal. Remember that these can change and will as the needs of the group change. You must be able to bend with the changes, too. Staying stuck in a rut will not benefit your members or your group’s purpose. Change with the times. |
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Nancy Groth of Terre Haute, Indiana, offers some good suggestions for groups:
Have guest speakers only once every three months so there is plenty of sharing time.
Try to have someone on the steering committee who is a service provider and cares about the illness so they can keep things going well when the rest of you have run out of steam.
Don’t try to remind members via e-mail or phone more than a week in advance of the meeting: they may not remember due to fibro-fog.
Leaders should keep their own problems to the steering committee. Your group members are dependent on you and may see you as needy. |
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Sue Nelson, a personal trainer who works with patients in the water states that she “creates ripples” of education, compassion and encouragement. You never know where the ripples will lead or when they might turn into a wave. |
How to Make your Group Positive
Many leaders and members of groups complain that too often, support group meetings turn into
pity sessions with a lot of negativity being expressed by group members. This can cause
frustration for leaders as well as group members. In fact, it is one of the most often mentioned
problems facing fibromyalgia support groups. We know that people with fibromyalgia may be
frustrated due to a variety of reasons including; lack of adequate health care, high pain and fatigue
levels, loss of jobs, friends, and numerous other reasons we may not even begin to ascertain.
These people may feel a need to vent their feelings and have no other place to do this. Some
people who are constantly irritable and complaining, may be in need of psychological help or antidepressants.
One of the hallmarks of depression is irritability. Many of us think that crying, or
feelings of sadness are the main symptoms of depression, but in reality, irritability and feelings of
hopelessness are oftentimes just as present in depression as that of sadness. Some of the
dysregulation in body chemistry is actually causing FMS patients to feel irritable. We should not
be judgmental as we are not standing in their shoes, so to speak. Have compassion and remember
that each person is affected differently by this illness. Those who whine may be lonely and have
no one else to talk to. Of course, there are some people who are just plain irritable and would be
like that even if they didn’t have fibromyalgia! Dealing with these individuals can be difficult
and challenging, to say the least. The leader, or your co-leaders, should be able to confront those
people who present with the most negativity in a non-critical, compassionate, yet assertive way.
If you or someone in your group cannot, it could cause difficulties for the group.
Why it is important to keep your group focused on the positive.
One of the more important reasons for keeping a group focused on positive issues is that by doing
this, you will decrease their anxiety and stress, enhance their feelings of hope and increase their
ability to handle the problems that occur when living with fibromyalgia. Research shows that
without hope, people have difficulty improving. Negative thoughts fuel the fire of depressive
thoughts, increase sadness and make us feel that we should not even try because things won’t or
can’t get better.
Here are some ideas for keeping meetings positive:
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One of the most effective means to deter complaining is one of the most obvious: leaders
need to announce at the beginning of each meeting that complaining is not allowed. This
may be difficult for some leaders to do as it is often difficult to confront those issues that
bother us the most. Also, you may just forget to mention it at each meeting (we can
blame this on fibro-fog). As a leader, you will have to take the initiative to bring this
problem to the forefront of discussion. If you don’t, members will talk about their
dissatisfaction with the group anyway; either behind your back, or during breaks. So you
might as well talk about it openly. Members may not come back if you cannot stop the
negativity from spreading. It might help if you make up a speech beforehand, one about
being positive and the necessity for being positive, so that when negativity shows up, you
will feel confident in handling it. Announcing it at all meetings will also help new
members understand what your group expects and allows. |
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Make a large poster that is visible at all meetings with a reminder to keep the group
positive. A number of leaders have mentioned that when they developed guidelines for
keeping a group positive, they had better success. This can be an activity for the group to
perform. Have the group members decide what to put on the poster. This will allow them
to discuss their feelings regarding negativity in the group and will allow for some
ventilation of their own feelings. It is also a nice group activity to help set the direction
of the group. |
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Decide in advance how you will handle a negative member. Will one of the group’s coleaders
take that negative person aside privately, will you point to your poster which
clearly states the meetings are positive, or will you just announce to the group “ I feel
our discussion is getting too negative and we must remember to stay positive.” |
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Announce that members will be allowed 15 minutes (or whatever length of time you
decide) of total complaining time after which complaints will no longer be allowed. It is
important to mention that each individual person who wants to complain will only be
give a few minutes to do so. Use a timer, if necessary: an ordinary kitchen timer will do
nicely. Then another person can complain. Those who continue to complain after the 15
minutes, will be reminded that the time is up and be redirected to a more positive topic.
One way to do this is to say to the member who is the complainer, “I hear you are
feeling very frustrated about …... Is there anyone in the group who has some way of
coping with this particular problem?” After the allotted time is up for complaining, you
will then discuss positive ways of coping with the complaints! |
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Assign a buddy to new members. A buddy is someone who will talk privately to the new
member either at the meeting, on the phone, or who might meet with them after the
meeting. They can explain the group’s goals and focus to the new member and provide
one-to-one support which will also assist the new member in feeling like a part of the
group. |
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There is an effective way of communicating with difficult people that works very well. It
is a simple technique, called active listening, which takes a little practice, but once you
get the hang of it, you can utilize it not only for problem support group members, but also
with your children, spouse, significant other, friends, and family. It is so effective you will
be amazed! When someone is complaining you only need to reflect back what they have
said to you in such a way as to make them feel you sympathize with them, but you
change their words. For instance:
Complainer says: “My doctor does not help me at all, he just spends 2 seconds with me
and then pushes me out the door!”
Leader says very simply: “Your doctor doesn’t take time with you” (this is a very simple
reply which validates the complainer’s statements and makes them feel that they have
been heard)
Complainer might then say: “Right, how can he help me if he doesn’t take the time to
listen to me?”
Leader reflects back this statement by saying something like: “It takes longer to help a
fibro patient than other patients he/she usually sees” or “You feel like he doesn’t help
you?”
Complainer says: “Yes, he doesn’t help me. I am still in pain.”
Leader asks the group: “What would anyone else do in this situation?” to deflect the
conversation to a more positive focus.
This way you can move the conversation to the positive ways of coping with a doctor
who spends little time with a patient. This will set up a good topic to discuss with the
group. You should then get responses such as: “My doctor spends a lot of time with me
and her name is…... or “I think I would find a new doctor.” Another response could be:
“I take in a list of topics I want to cover during my appointment and that seems to help.”
This can lead to a good discussion with some useful tips which will actually aid people in
dealing with their doctors rather than setting up a “doctor bashing” session. If other
members begin joining in on the complaining, continue deflecting their negative
responses to positive and constructive ideas.
This would be a good time then to get out our chapter on dealing with doctors and go
over some points addressed in it. |
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Place the serenity prayer in an obvious location. Read it out loud to the group.
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Be reminded that no matter how much you try to keep your group from becoming negative, there may be someone you just cannot keep from whining. Say the serenity prayer yourself, often! |
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Occasionally, you may have a member who is suffering from a mental illness, or who becomes extremely emotional during the meeting. This has happened to Julie and I. Although it is a difficult thing to do, you may have to call the police or security if things get out of hand if you are holding meetings in a health facility. If this happens, do not attempt to confront the person, as one can not know what a person in a highly agitated state might do. Get help. Speak in a low, soft voice, as this will calm them down. If you raise your voice to their pitch, they will just escalate. Remain calm, it will help them calm down. |
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One leader encourages members to “sandwich” negative thoughts between positive thoughts. |
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Include a regular time at each meeting when members are allowed to share a positive thought for coping, or provide a new resource or information. This will encourage members to look for positive news to report. |
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Diane Spizzirri, of Schaumberg, Illinois, starts out every meeting with a joke. You may have to write down the joke if you have a bad case of fibro-fog. Group members could be encouraged to provide their own jokes. Have a joke box!! Let everyone put a joke in it and pick one at each meeting. Have members read it out loud. |
Topics for Discussion and Activities
Many leaders have requested ideas for topics to discuss when speakers are not available. We have
come up with a variety of discussion questions for you to use at meetings and also provide ways
to use our book in your group to help you facilitate meetings.
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One activity to utilize which is easy to do and group members love, is to divide the group up into small groups with 3- 5 people in the smaller groups. Have members count off from 1-5 and all the 1’s get together in one area of the room. Other numbers get together in another area. This way people will get to know each other personally and you will keep people from engaging in “clique” activity. Have a topic for each small group to discuss for a time - maybe 20 minutes. One person in each group will be the spokesperson for that group whose duty it is to take down notes and report to the larger group. You then come together as a large group and discuss the topic. Allow each group to report with time limits. |
Topics for Discussion
What local resources are available?
Tips for pacing.
Tips for coping.
How to expand your support network.
What are the most difficult things you experience due to FMS?
Discussions on effective exercise.
What helps you sleep?
How does your family help?
How do you get your family to help?
What to say to people when they ask you about your illness.
How do people cope with holidays?
Suggestions for traveling on planes and by car.
Suggested Activities
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Carol Johnson, from Red Oak, Iowa, had her group participate in two surveys from universities. |
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Some leaders make packets of information and send them to local doctors. It would also be nice to have the group put these packets together at a meeting and take or send them out. This would encourage group sharing and facilitate personal connections between people. |
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Ask the local mall if you could have a booth there and hand out fliers about FMS and/or your group. This will get members active and will also help spread the word. FM awareness day, May 12, might be a great time for this activity. |
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If you live in a smaller community, you may be able to get on the local news broadcast. Call them, you may be surprised as they are always on the lookout for news. If you are feeling uncomfortable about calling, delegate this activity to someone who does. |
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Show videos to the group and discuss afterwards. These do no necessarily have to be on FMS, but could be on a topic related such as t’ai chi or easy yoga. Everyone can have fun while trying out the best relaxation and movement activities there are. |
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Potlucks are always fun and encourage socialization. |
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Your group could meet at a local warm water pool or health club to encourage socialization as well as participating in exercise. One of the health club trainers could explain techniques helpful for FMS. This activity could encourage members to exercise as well as finding a buddy to exercise with. |
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Try to vary your activities and programs to provide a variety of events. This will help your group stay interested instead of becoming dull or boring. |
It is important to have fun as well as be well-educated!
Members often need to know about local or national resources. Keeping a resource list which is
updated regularly will allow your group to be informed and up-to-date.
How to Use our Book in a Group Setting
Encourage members to read a specific chapter from our book before the meeting. Or in
desperation, read it out loud at the meeting. This may sound grade schoolish- but some people
have fibro-fog quite badly and may have a difficult time reading and remembering.
Leaders have permission to use our worksheets (journal pages) from any of the sections we have
provided worksheets for. Have members get together in the small group settings to fill them out.
Then come together as a large group after about 30-45 minutes of discussion time to share with
the larger group.
Specific suggestions for worksheets:
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Support Ring Page: the worksheet with the support ring from the coping chapter would be a good one to use. Each member can fill it out individually then share their responses with the larger group. This way you may find out which members have little support or friends and could use some from your group. Discussion questions could be: How can you find or put together a “family” if you have few family members living near you? Other members might provide local resources that your community offers. |
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Exercise sheet: have members share which exercises work for them. Members could discuss local resources. Go over the exercise chapter and discuss our exercise program. Encourage members to bring in their sheets at meetings and share their experiences. |
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Stress management: Beg, borrow or buy a stress relaxation tape and use our information on deep breathing to practice relaxation exercises with the group. It is nice if everyone can lie down in the room, and listen to the tape you provide. Ask members to practice daily and report back at the next meeting. Your group could practice abdominal breathing and then try meditating as a group. Have the group focus on one word or on their breathing when meditating, as it helps facilitate positive results from the practice of meditation. Discuss ways in which people use relaxation to help their symptoms. Have them share what works and what doesn’t. Use the daily stress management chart and fill it out in small groups. Or you could use it for a large group discussion. |
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Go over our “Most important daily affirmations list.” Make up your own. |
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Negative self talk journal page: discuss negative thoughts and negative talk in general. Have members fill out our worksheet and discuss their answers. Have them write down how many times a day their thoughts are negative. Work on ways to counteract this. Members will have some good ideas. |
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Discuss positive uplifts. This concept is found in the chapter on “Coping with Psychological Aspects” and is also included in the support ring diagram. Have people write ideas and share them out loud. A list of possibilities is found in the same section of the book. It would be nice to have someone compile all the results and have it available at meetings. This is something that could be added to at every meeting. People need to be encouraged to provide themselves with a daily uplift, or at least a few times a week. The uplifts need not be expensive or lengthy, but can be free and take only 5-15 minutes. |
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Everyone likes to talk about their medication. Have people bring in their pill bottles. They can fill out our medication diary which may best be done in small groups. They could also work on the journal page “Questions to ask your Physician.” You could then use our medication section to talk about and answer questions they might have. |
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Use a poster board, large paper or blackboard and have everyone list their symptoms. Or use our symptom check list. Discussion could be: which are the most difficult to cope with? Which are FMS related or could be related to another illness? Which are the hardest for family or friends to understand? Use our symptom and diagnosis section for this topic. |
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You could have a similar discussion using the feelings journal from the book, found in the “Psychological Aspects” of our book, as well. List feelings members experience and how they cope with them. |
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Have a family night. Encourage family members to attend and share experiences on how FMS affects families. Use our family section in the psychological coping area as a framework for discussion. It may be interesting to separate family members from patients and allow them to have their own discussion. This may allow them to share experiences and learn from each other. |
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Discuss alternative therapies they have used. What worked, what didn’t and local resources. |
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Have a computer night. Share internet resources. Discuss which are the best and make up a list for members. You can use our list as a resource. A group member could bring in a laptop computer to access specific sites for the entire group to share. Going to the local library to meet and have lessons from the computer person there would help members become familiar with using computers. Group members could also assist other members who are inexperienced with computers. |
These are only some suggestions, certainly not everything that could be discussed. Ask members
what they would like to hear about as well. Remember, that if your group can get to know each
other personally, they are more likely to attend. Also, we think you can see from this list, that you
do not always need a speaker or a video. People need support as well as education. Letting group
members become involved during group meetings will help provide group synergy and allow
your group to get to know each other better.
Contact national organizations listed in our resource section for more information about support
groups.
Remember, Have Fun!!
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