Starting a chronic pain support group
By Susan Dudley Gold, Leader
Chronic Pain Support Group, York County, Maine
Starting a chronic pain support group can be the most rewarding thing you've ever done. It can also be the most difficult. I began a chronic pain support group in 1993 after I had been diagnosed with rheumatoid arthritis. My friends and most family members did not-and could not-understand what I endured living every day with chronic pain. I found myself growing bitter.
Then one day, as I stepped onto the sidewalk, a homeless man passed by. He saw me wince as my inflamed knee buckled under my weight. Looking into my eyes, he said gently, "Your knee hurts. I hope it gets better soon." Then he walked on.
Those simple words changed my life. This stranger, this man who had his own pain and his own troubles, reached out to me. At that moment, I realized I had to find other people who also understood. Nine months later, I joined four people to talk about chronic pain and how it had changed our lives. This August our support group will celebrate our 22nd anniversary.
That first meeting, I found myself nodding again and again, "Yes, that's just what I feel." At almost every meeting, we have a new member shyly peek in the door and join us. I see that look on their faces, too, first of amazement and then of relief, that, here, finally, someone understands.
Here are some guidelines I followed when setting up the Chronic Pain Support Group.
- Attend a support group in your local area to see how it operates. If you aren't satisfied with the way that group runs, find a group that is more to your liking. There are all kinds of support groups, and you can learn from them even if they don't address a problem you share. Consult with the group leaders and ask them for advice.
- Read all the information you can find on support groups: what they are, what they do, various ways to run them, pitfalls, benefits. Consult the local library and the Web for information and resources.
- Make use of materials developed for support groups. The Arthritis Foundation, which co-sponsors our group, and the American Chronic Pain Association, of which we are a member, provided much valuable information and support in forming the group. Although the Arthritis Foundation no longer sponsors new groups, the organization offers materials and an Arthritis Self Help Course that can be adapted for use at a support group. ACPA is an excellent resource for people who want to start a support group. The organization offers a comprehensive manual for leaders of support groups. Regional representatives provide advice and encouragement to new leaders. ACPA members receive the ACPA Chronicle, a quarterly newsletter, another wonderful resource filled with information on coping with pain. Also available is the ACPA Member's Workbook, a guide to managing pain. Our group has this Web site that has information and hints on starting your own support group.
Ask for help. Find someone who is willing to be a co-leader with you, so that person can help plan meetings, run them when you're on vacation or not feeling well enough to attend or just need a break. It's also nice to have someone else with whom you can share problems, consult on difficult situations/problem group members, and brainstorm meeting ideas. I started the group on my own, but enlisted the help of one of the members as a co-leader shortly after the group began.
Your meeting place should be:
- Handicapped accessible.
- Free or inexpensive space.
- Easy to find.
- Available on an ongoing, regular basis.
We began meeting in the parlor of a local church, which was very supportive and did not charge us for the meeting space. For the past several years we have met in the hospitality room of a local retirement community, which also provides the space free of charge. We do put out a basket with a sign that invites people to make a donation of $1 if they wish. A portion of this money is donated each year toward a project to benefit the retirement community's residents. The latest donation helped finance the residents' newsletter. It's always nice to say thank you.
Other possible venues include health care facilities, libraries, schools, community buildings. We found the church parlor and the hospitality room worked well because they each had a variety of comfortable seating arrangements (couches and overstuffed chairs as well as hard-backed chairs for those who need more support).
Set a time that will be convenient for you, as the leader, but that will also be reasonable for potential members. We meet twice a month from 6-7:30. Several members, including me, work during the day so that seemed the best time for us. In the beginning we scheduled meetings from 7-8:30, but members asked to set an earlier time because they often were too tired to stay out that late. The earlier hour also accommodated people who had difficulty driving in the dark.
Publicity: Gettting the word out
- Word-of-mouth: People often hear about our group from other members. This was especially important at the beginning to help build up membership in the group.
- Referrals: Referrals from doctors and other health-care providers have been central to building our group. Many of these referrals come from speakers who have seen our group in action. To build confidence and awareness, I invited local doctors and other health-care professionals to attend our group as speakers or as observers. Members have also shared information about the group with their own doctors and other health-care providers.
- Press releases: I send press releases (see samples) of each upcoming meeting (and info about our speaker if we have one) to two local daily papers, two weeklies, local radio stations, and occasionally to the cable TV and network TV and stations.
- News articles: We have been fortunate to have had several local news stories written about our group. We have used special events (i.e., our first meeting, our 10th anniversary, a group cookout) to attract the media's attention. Several members have been instrumental in contacting local news reporters and have provided quotes, shared their stories, and posed for photos. If you invite a reporter to the meeting, be sure to get permission from the group members first.
- Newsletter: Because I have a desktop publishing business, I am able to put out an occasional two-page newsletter for members, friends, and professionals in the area (samples attached). Each newsletter has information of interest to members as well as a schedule of meeting dates and topics. Also on the mailing list are churches and anyone who has attended a meeting. The local hospital pays for the copying and postage charges. In order to qualify for bulk rate postage, at least 200 pieces have to be sent out (we have about 250 people on our mailing list).
- Brochures: I developed a brochure about the group that we give to new members and display in doctors' offices, pharmacies, and other health-related spots as well as local libraries and other venues. Speakers often take brochures with them to display in their offices.
- Flyers: We post flyers with the meeting dates, upcoming topics, time, place, and contact numbers at grocery stores, churches, pharmacies, and other venues.
- E-mail: We have a list of e-mail addresses for those members who are online. Before each meeting, I send out a reminder to those on the e-mail list, stating the topic/speaker, time, and place (even though it's the same time and place each meeting). This helps jog members' memories of upcoming meetings and keeps them in the loop. I occasionally send out information on other events of interest to members as well.
- Web: We have this site with information about the group, contact info, links, and resources.
Signup Sheet/Membership List
We have a signup sheet with name, address, phone number, and e-mail address. An e-mail reminder of meetings goes out twice a month. The addresses are used to mail out our newsletter. We also have a list of members' names, addresses, and phone numbers available to all members, so they can call each other, send notes and cards of support, and be in touch if they want to. The list is never made available to sales people. We also have nametags for everyone to wear (either first or first and last name, whatever people prefer). At the signup table, we have a basket for donations for the meeting place yearend gift and group expenses (postage, etc.). A dollar donation is suggested for those who can afford it, but there is no pressure or recordkeeping regarding donations. There are also pamphlets (available from the ACPA, Arthritis Foundation, among others), books, tapes, videos, magazines, and other material on a table nearby for people to take home with them. Much of the material is from the ACPA and the Arthritis Foundation; other items are provided by our speakers and by group members.
Once people have signed in, we gather in a circle, introduce ourselves, and I give a short meditational/relaxation reading. At least one meeting a month, we have a general discussion group. Usually, the co-leader and I develop topics ahead of time, but we're pretty informal. The group may decide to head in another direction, and that's fine. The aim is to keep meetings upbeat, focusing on coping skills and ways to deal with chronic pain. I encourage people to talk, but I'm careful not to put people on the spot. Sometimes it's obvious a person is uncomfortable talking in the group, but that person will talk during the break. If people start getting off the track, I ask a question to steer them back to something that relates to chronic pain. I'm not too strict in this regard, however, unless it goes on too long (more than 5 minutes). Often, such discussion leads to laughter or sparks someone else's interest, so it's valuable to allow people some leeway. I also want people to feel like it's their group, not mine, so I try not to be a boss, just a helpful guide. Certainly, allowing people to talk back and forth has been informative and has helped foster relationships. Other members can be very supportive in their comments and suggestions. The only thing not allowed is an attack/harsh criticism. But we've not really had any problem with that: the group members seem to be very protective and nurturing of one another.
Our meeting schedule goes like this:
- 5:50-6:05: sign-in/greetings
- 6:05-6:10: introductions/announcements/meditational reading
- 6:10-6:50: Discussion/speaker
- 6:50-7:05: Break/refreshments (I usually try to have fruit and juice and tea; this responsibility is shared among all members)
- 7:05-7:25: Further discussion; question-and-answer period for speaker
- 7:25-7:30: Reading/farewell.
I always urge people to get up and move around if they are uncomfortable. The break is a good time to get to know people better and to draw out some members who are shy. I warn a speaker ahead of time that we'll be having a break. If the speaker doesn't stop for the break, then I politely cut in. I try to begin and end the meeting on time. If it seems people want to continue discussions or have more questions for the speaker, I suggest they continue outside the meeting room. Speakers are generally willing to stay an extra few minutes to answer personal questions.
We've had wonderful support from a whole range of professionals in the area. Here's a partial list of professionals who have spoken to our group: rheumatologists, counselors, ministers, pharmacists, family doctors, chiropractors, massage therapists, biofeedback experts, psychiatrists, nutritionists, Reike practitioner, pain management clinic staff, job counselor, occupational and physical therapists, homeopathic practitioner, osteopathic doctor, and specialists in a number of diseases (lupus, fibromyalgia, anaesthesiology). We never pay our speakers, it's strictly volunteer. The doctors, in particular, have seemed to enjoy talking with "real people." We allow speakers to leave information, brochures, and business cards on our information table. We do not allow speakers to sell or promote services or products to our members (no "sales pitches"). Before the meeting I send speakers a brochure, a copy of our newsletter, a map to our meeting place, our meeting format, and contact information. After the meeting, a member writes a thank you note.