I interviewed Sharon Weiner, founder and president of Living with RSDS/CRPS — a chronic pain support group in New Jersey – about her tips for joining, starting, and running a healthy chronic pain support group. For more information about and resources on joining, starting, and running a healthy chronic pain support group, see the Spring 2010 issue of Pain Pathways magazine — available at Barnes & Noble or through purchase from the Pain Pathways website.
What are your thoughts about the purpose and benefits of a chronic pain support group?
The purpose of a chronic pain support group is to offer information, education and emotional support to those with chronic pain and to family and friends affected by the syndrome. The sharing of information and ideas creates a huge pool of resources from which to draw. More importantly, many who attend a support group for the first time are so happy and relieved to find others who have the same issues — whether they have the experience of patient or caregiver. They realize that they are not alone.
What are some of the resources offered by RSDSA in terms of joining or supporting a chronic pain support group?
RSDSA (Reflex Sympathetic Dystrophy Syndrome Association) has very good website to use as resource for information. All affiliated support groups are asked to have their meetings listed. A free information starter package is available for prospective support group leaders, once they have spoken with the director, Jim Broatch. And of course, Jim himself is a great resource and very supportive.
Jim will most often send an alert to me about someone starting a support group. I then will contact that person via email – to answer questions, give support, and offer suggestions and advice on what has worked for our group.
How can joining or starting a support group change the life of someone with chronic pain?
The first time a member told me that the support group saved his life, I was overwhelmed. When suffering with an often-misunderstood and painful syndrome, it is very welcome to have others understand you and to offer emotional support, suggestions, and advice on what may help. This feedback may lead to treatments not considered before, a better way to handle a situation, or just knowing you are not alone in this. A lot of people who attend meetings for the first time have never met another RSDS/CRPS patient.
What are your thoughts about the elements of a successful chronic pain support group – ie, what works and why?
There are few elements that come to mind: Organization, continuity, compassion, resourcefulness, and remembering that just because you lead the meeting doesn’t mean you need to know all the answers. I started our group by first finding a place to meet, then creating a flyer and mailing it to doctors and medical professional offices.
The meetings work best if they are at the same place, time, and day of the month. It is enough for many to just get to a meeting, so keep it simple and consistent. Be organized, get member information (for monthly meeting reminders or pertinent information only), sign in sheets, an answering machine to receive calls, a website and a basic meeting format.
Create a new member package about RSDS/CRPS, for new members who may need it. Let everyone tell their story, but keep it short. Everyone is there for support and needs to be heard. We also have a premise, “You leave it at the door.” We are all suffering, and this meeting is not a contest.
Speakers are great, but also keep time for members to talk among themselves and for new members to ask questions. If there are guest speakers, make sure they understand the syndrome and that we often move around a lot, due to our pain. I once had a speaker in tears, because I forgot to mention this information. She thought we were bored, because we were fidgeting and moving around. Send thank you notes.
Ask the members what they would like to learn, about and try to find someone who can talk about it. Don’t be afraid to ask for things; all someone can do is say no, and you are no worse off. In our group, we have had hypnotists, lawyers, doctors, therapists, self defense instructors, motivational speakers – any topic that involves living with the syndrome..
We do not charge dues and will not. Another concern about leading a group is that there will be costs involved. You can ask for a donation or charge dues. Ask for what you may need. Stamps? Copy paper? Ink? We had a member who owned a sign company, and he made us a huge banner to use. Snacks and drinks are nice, but optional, and can become costly.
We have run fundraisers for many years. We purchased coffee machines and supplies, a hand truck to pull all the supplies to the meeting, printed group materials, and a laptop, and we had our website professionally created. We even became non-profit. Be resourceful.
Our group always joked about all of the stuff I brought to a meeting. I learned to create a travel office box of materials, new member packages, a scrapbook of the articles etc.
We also keep a look-out for awareness projects or create our own to draw attention to RSDS/CRPS. It is also a way to keep the group united for a positive effort. I read many, many magazines and newsletters and receive health alerts. This is often the basis for a meeting, when there will not be speaker.
Have a plan. Take classes or attend workshops about leading a group. We can always improve, and it will help the group. You may never know what situation you may find yourself confronted with. I enjoy leading the meeting and find a great sense of accomplishment, but there are times that it is overwhelming — emotionally and physically. But the rewards keep me going.
What are your thoughts about pitfalls to avoid in a support group and why?
Once your group is up and running, try to find help — someone or a few people within the group who would willing to help run a meeting if you are unavailable, or take on administrative tasks. A few may have had to stop working and will enjoy helping. Don’t be afraid to ask and accept help! You have this syndrome too.
Taking on too much too soon or too fast can be a problem . It’s better to commit to a smaller task and do it well, than to think grand and fail. You cannot predict how you are going to feel. Many members may come to depend on the meetings for support. Don’t let them down.
Trying to please everyone also can be pitfall. I let all new members know that not every meeting will apply to them. Certain topics may have not appeal to some but may be life altering to others. Members receive monthly meeting notices, with the topics of discussion, so they do know ahead of time.
As the leader, you run the meeting and try not lose control of the meetings. A certain amount of “free for all” and smaller group talking is great, but at every meeting, it would be unproductive as a whole. Remember you are the facilitator of the meeting.
Many conversations about doctors come up. No doctor bashing! We do not allow this. Doctor-patient relationships are private.
You also need to remember to remain unbiased with information. As the leader, you are there to provide information, not to tell the members what they should do. Recommendations can be made if pushed, but do not tell members that they must do or try something. Other members may give strong opinions. They are entitled to do so but must do it civilly.
Not listening to the needs of the group is a problem. The group may consist of people in different stages of life, length of time with the syndrome, caregivers, patients, and so on. You need to find ways to keep it interesting . Ask the group. They may have great ideas!
What do you see as the potential fear of resistance to joining or starting a support group? What are your tips for how to overcome that fear?
When I talk to potential newcomers, they are concerned that it will be a depressing night of horror stories. I explain our mission and concept and what previous meetings have been about. The first support group meeting I ever attended was so demeaning and depressing, I swore to never attend another one. Then I realized that would be counter productive, and that if I put my mind to it, I could do better. We keep it positive and honest, and no grandstanding is allowed. It’s about offering and sharing information on how to live with chronic pain.
Before joining a group, I made a habit of asking, “What the meetings are like? How many members? How long has the group been meeting? Who attends (patients, caregiver etc)?” Make sure the group fits what you need. If you need to, bring ice packs and blankets, to be as comfortable as you can.
When our center started charging for parking, and a few members had difficulty with the expense, we went to the medical center, explained the situation, and were granted a pass for those members. Knowing that you will offer assistance, even for something like parking, may help members understand that you do have their interests at heart.
Sharing personal stories, some of which can be emotionally painful (depression, suicide concerns, marital problems, financial issues) can be difficult. But what you gain from sharing at a meeting can be life-altering. Meeting someone who understands and is willing to listen to you vent, or have a cup of coffee, or have movie with you, can help you cope.
Another big issue is travel. A lot of RSDS/ CRPS patients have trouble driving, so getting to a meeting is difficult. Online groups work, but I think the in-person meeting offers something a bit more. Carpooling between members can help solve this problem.
Starting a support group is a major task that should not be taken likely. Some people may be afraid or worried about the responsibility of the monthly event, or concerned that the group may fail, or already may be dealing with so much related to pain. If you take the time and plan it out, being organized makes the process much easier.
The public speaking part intimidates some. Anyone who attends is not here to embarrass you or grade your presentation. They are thankful a group is available. Do your best, and ask for suggestions and advice. Use comment cards or surveys as a tool.
Please talk about the catch-22 of needing a support group because of chronic pain, but being unable to get to a support group because of chronic pain.
This will always be an issue, and often there is little to do about it. We are working on streaming our meetings live, though our website, so that those homebound individuals can be part of the meeting. It will take a while for us to launch that feature, but it may help.
People can use email and the phone, but of course, meeting with a group in person is different. The give-and-take and exchange of ideas is a wonderful therapeutic tool. The personal interaction is so important.
We are hoping that if we have a speaker, and someone cannot attend, the member will email questions or concerns, and we will have them answered. Patients can register on our website, and we will get back to them ASAP. We considered satellite meetings, to help those that may not be able to travel to our current meeting location. It is quite an undertaking and needs to be planned out accordingly, if it is to succeed.
What are your tips for identifying personal support needs around chronic pain? What are your strategies for matching those needs to the available resources?
The personal support starts from the time members share their story – either on the phone, in a meeting, or by email. Finding out how they got RSDS/CRPS, what treatments, medications, and questions they ask about, and so on, determines a course of action. I may ask another member who has similar story or treatment to get in contact with them or offer information from our resources – sharing websites that may help or developing a relationship outside the group setting.
Offering support is more difficult if the patient is young. Most group members are adults, and the issues affecting a teen will be different than those affecting an adult. I normally ask parents to first attend a meeting without the teen — to get a feel for the meeting. In some cases, the meeting helps the caregiver more.
What are your thoughts about how to know when a support group is working and when it’s to move on?
How do we quantify the success of a support group? If only one member attends, but it is helping, then isn’t the group a success? Many times, throughout the years, our group attendance has ebbed and flowed, for many reasons. Some have moved away; some have passed away; others have learned all they needed or wanted to hear. We have some members we only see once or twice a year, but that works for them.
If you, as the leader, become burnt out or lose the joy in running the group, it might be time to move on or give another leader a chance. Before throwing in the towel, I suggest polling the group — asking what improvements are needed and seeing what can be done. Maybe it’s just making changes – working on running a meeting live on a website, promoting the group more to reach more people, or revamping the meeting concept.
If you lose your meeting location and cannot find another, that is a serious issue. I would not recommend having the regular meetings your home.