How To Form A Support Group

Peer support groups are a beneficial way for those affected by SM and/or Chiari to share with others who understand their unique situations. If you would like to join a local support group, contact one of the group leaders listed below. These support groups are not monitored or regulated by ASAP.

Starting a Support Group Can Be Easy It Only Takes Two and The Desire To Start!

by Karen L McCann

Introduction

I have a Chiari 1 Malformation and Syringomyelia. I had decompression surgery but still suffer with continuous chronic pain. It affects my thinking, reading, talking, and walking.

But I'll tell you what I did to help my pain and my everyday struggles with pain. I started a support group for pain in Ohio. If you've thought about starting a group, DO IT. You won't regret it. It's not that hard to do and it will benefit you as well. So many times I'm in pain but the pain is overlooked because of the focus on others.

Being a member of a support group is an excellent way to break away from the isolation of a rare disorder or chronic pain. You can learn to cope with your problems through others' experiences and also learn to work though your pain. In a group where others have similar problems, you learn that you're not alone. You can share information and support with people who KNOW what you're experiencing. This can help you overcome many problems and how to cope better with your pain.

I developed this guide so others who have the desire can begin a support group in their area. No matter what the exact focus of your group is, the basics are the same. The focus can be on Syringomyelia and Chiari, or on chronic pain from any source. Pain is pain whether it's from Syringomyelia, Chiari, arthritis, or fibromyalgia.

How do I start?

Group Name and focus: Give your group a name. For example: Marion Area Chronic Pain Group. Giving the group a title sounds professional and enables the public to identify the group in advertising. If your group focuses on chronic pain, you may sign onto The National Chronic Pain Outreach Association's list of chronic pain support groups for your state.

Find a location: Many places are willing to donate a room for such a group. Check your hospitals for a conference room that might be available, most churches are willing to offer you a room or your city hall may have a room available. There are many options available to you, if you take the time to call. Ask friends and relatives for suggestions on meeting places.

Decide on the date and time: Once you have decided on the place, a date and time are needed. It is hoped that you can work out a weekly day and time that your group will be able to meet. This all must be done before you are able to go forward with the advertising. All arrangements must in agreement with the facility.

Advertise: Contact your local paper and ask if they will do a write-up on your new support group. You're providing a public service to the community and many papers have a weekly guide where you can advertise your group with the weekday, place and time.

Our group in Ohio is planning to go on radio to get the word out that we are here. Also post bulletins on hospital bulletin boards and doctors offices. Ask the American Syringomyelia Alliance Project (ASAP) for help in announcing your group to their members in your area. It's very important to keep the message alive that your group is here for the community.

What's the usual meeting procedure?

A support group can be either a discussion with suggested topics or you may provide a speaker. Having a combination of these meetings makes for a greater variety and will keep everyone's interest. Remember, too, that not every meeting will go as planned.

Discussion Format

  1. The group leader will usually pick a subject for discussion. The subjects can be issues such as patient/doctor relationships or efforts and frustrations of living with a disability. Topics on feelings of fear, self-acceptance, social or family isolation, denial, anger, and depression will also make for a good discussion.
  2. The group leader opens the meeting by introducing herself and asks if there are new members. If so, the leader will ask the new members to introduce themselves and what brought them to the group. This allows them to share. When attending the first meeting people need to feel as though they are included. Allowing someone to share is important, but DO NOT force someone to speak if she chooses not to.
  3. After introductions, the group leader can then open the discussion on the chosen topic, allowing all those who wish to talk to have their turn.

Although these discussions may be planned, it is important to remember that someone's well being is much more important. So please remember that if someone is having a difficult time with something, they need to talk, and they must always come first over the planned topic.
Speaker Format

You will find that healthcare specialists (doctors, nurses, psychotherapists, hypno-therapists, massage therapists, etc.) are willing to speak to your group. Your group should agree upon your speakers. Ask your healthcare providers, friends and associates for names of possible speakers.

The group leader will introduce the speaker after new members have been introduced. You may allow for a question and answer period following the speaker. If there's enough time, have your group members share their stories of struggles or successes on the subject matter. Be sure to follow up with a thank you note to the speaker after the meeting.

What are some guidelines for a successful group?

Your leader must always be in control so no one is taking over the whole meeting. Too much babbling can bore and damage a group. Try to keep it down to a minimum. Learn to know when you need to move on to the next person or change the subject. Always remember, "If you're bored with it, so are they." Ask a question or ask someone else how they feel about that topic.

Never leave one person in charge of every meeting. Choose someone different to lead. Sharing in the responsibilities gives everyone a sense of belonging. This way no one feels like they're taken advantage of, must be in total charge, or left out. Avoid leaving people out unless they choose to be left out.

Keep the confidentiality of all members. Whatever is said within the group needs to stay within the group. Help make your meeting a safe place where a person can share their deepest thoughts, feelings and needs.

Take your turn as group leader. The life of your group depends on all members, not just one person. All members should participate in the group leadership, giving and sharing in the responsibilities. Get involved and make sure you help your group become healthier.

Share a thought or feeling during a discussion that is starting off slow. Remember to back off if you sense you're dominating the discussion.

Share concerns and opinions. Keep in mind that the group does not "fix your problems." Nor does any one person "fix anyone else's problems." Share your understanding of what someone is going through based on your experience and knowledge of that particular situation.

Avoid making medical judgments or giving medical opinions. Leave that to the professional health care providers.

Make a commitment to participate and attend the group on a regular basis. If you miss a meeting, you are not the only one missing out. The group misses out on what you would have added to the group. Your input and what you have to offer the group is always important.

What Are Some Group Duties?

One person is needed to make directional signs leading to your group meeting (if permitted to do so). Hang them before and take them down after each meeting. If you're not permitted to hang signs in the building, make one for the door to your meeting room. You'll never know when someone new is coming, so this is important.
The leader of the group oversees the group's best interests and controls the meeting. The leader should always be there early enough to greet those coming in the door.
Someone should take the attendance every week. This can be done by the group leader or it can be done be someone else. Also keep phones numbers and address up to date.
Your group may choose to have coffee and tea or other refreshments during the meeting, but this is optional. If the equipment is already in the meeting room, all that is needed is for someone to come early enough to make the coffee. Putting a donation cup by the coffee will help to pay for your next can of coffee.
Remember to switch these duties often so everyone takes some responsibility and stays involved.

Tips for Meetings

If you are leading a discussion remember, don't lecture. Lectures are boring. Lead means to guide and direct your meeting. Nothing more.

Don't ask a question that can be answered with a yes or no. For example: How do you think the discussion went? Don't ask: Wasn't the speaker good?

Allow silence. People need to think before responding to a question. Know when the silence has gone on long enough. They just may not have anything else to say on this subject. You'll be able to recognize the difference with experience.

If the topic you chose for your meeting does not work, it's always a good idea to have a back up plan. Use your back up plan only if the meeting is not going in a positive direction. And always try to end the meeting on a good note. For example: a joke, something funny that happened to you or get one of those funny E-mail stories that are always passed through the Internet.

Allow the group to lead you in the discussion. If you force the group in the direction you want it to go, you might realize that no one is following you. Concentrate on keeping the discussion going and see that everyone has his or her chance to speak. Remember you are leading the meeting to serve the group, nothing more. The group is what makes for a good discussion, not you.

If someone makes a statement or responds to a question ask, "Why do you say that?" Or, ask someone else in the group what they thought about that person's response and why.

Covering too much information in a discussion can be overwhelming to your group members. Keep it simple. If you can find information on the Internet to help someone, that's great. But limit the information so it's not too much to take in. Share your information slowly so everyone can benefit.

Do not let anyone dominate the meeting - including yourself. This can be critical to the group's future growth. Those who find this offensive may leave the group and this may lead to more leaving. Please be conscious of this because it is harmful to the group.
Always encourage your fellow members to talk about their situations, but don't force them. Your might just run them off and lose what could have been a valuable member to your group.

The phone is a vital tool. It is important that your group members have someone they can call when they're down and just need someone to listen or help walk them though their pain or fears. Ask the members to volunteer their phone number if they have a good listening ear or would just like to get involved. Make the numbers available to all your members. Distribute a phone list to all members. And remember, when you're helping someone else, you forget your own problems.
What can I use for a topic of discussion?

Below are some suggestions for topics, but ask your group what they'd like to discuss. If it's not relevant to most of the group, then what's the point?

Grief and Isolation - The grief and isolation that a person goes through once they have been diagnosed with a rare disease or chronic pain puts them on an emotional roller coaster.

How satisfied are you with you with your quality of life? - We all have different levels of wellness depending on our progression and acceptance with our disorder.

Different stages for experiencing a loss - Denial, isolation, anger, bargaining, depression and acceptance. These are all emotions that you will feel at one time or another. And they continue to affect our lives time and time again.

Chronic pain and social isolation - Have you had difficulty thinking or talking? Have you found yourself withdrawing socially because of it? Everyone in the group will know exactly what you're talking about.

Friends and family support

This is something that will vary. You'll find another member's friends and family are very supportive as well as those whose friends and families just do not understand. Sometimes they don't believe the pain is real. And there are those who want to help but just don't know what to say or what to do.

How do you deal with public reactions?

People will look at those who look different. We all do at sometime or another. That's human nature. But what if it's you they're looking at. How does that make you feel?

How do you cope with an uncertain future and the loss of your health?

We've all given up so much already, our health, perhaps career choices or important relationships. How much more will be demanded of us?

Thanks to the experience I've had with Overeaters Anonymous, I was able to create this guideline and help make our group in Ohio successful. I draw inspiration from the words of Rozanne S. who wrote a piece called "I Put My Hand In Yours". I have excerpted some of it below. May it inspire you as well!

"I put my hand in yours . . .

. . .And together we can do what we could never do alone! No longer is there a sense of hopelessness, no longer must we each depend upon our own unsteady will power. We are all together now, reaching out our hands for power and strength greater than ours, and as we join hands we will find love and understanding beyond our wildest dreams.

". . . We have learned that there is strength in numbers, and that if we band together in a group, we can share many kinds of experiences, strength and hope with each other. . . . I have been where you are, and I know how difficult everything may seem to you, how the problems and conflicts that can arise may seem to be overwhelming. . . . Remember, you are not alone. We are all with you all the time, even though you may feel lonely and far away. . ., we hope that . . . you can feel our spirit of love and understanding, our desire to help you. . . . Come with us and let us show you the way and as we reach out to you, we truly hope that you will take heart and put your hand in ours."

Rozanne S. Overeaters Anonymous From "I Put My Hand in Yours" Copyright 1968 by Overeaters Anonymous, Inc. Reprinted by permission of Overeaters Anonymous, Inc.
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For more information contact:
American Syringomyelia Alliance Project, Inc.
P.O. Box 1586
Longview, Texas 75606-1586
Phone: (903) 236-7079 or 1-800-ASAP-282 Fax: (903) 757-7456
E-mail: Info@ASAP.org

American Chronic Pain Association
P.O. Box 850
Rocklin, CA 95677
Phone: (916) 632-0922
Web: http://www.theacpa.org
E-mail:ACPA@pacbell.net

Karen McCann
Phone: 740-383-4363
E-mail:klmpsm@aol.com