By Jenny Picciotto for the RSDSA blog.
Support groups are incredibly important to the CRPS community. RSDSA works to help make sure that these support groups are equipped with the tools that they may need. Jenny, a support group leader, writes about the upcoming Safety Month and what being a Support Group Facilitator has done for her.
In June of last year, the RSDSA began an outreach program for support group leaders. I jumped at the opportunity to participate in their monthly calls. Having been the facilitator of the Oahu CRPS Support Group since 2013, I have faced many of the same challenges I heard described by other leaders; finding a place to hold meetings, getting the word out, selecting topics for meetings, and maintaining enthusiasm when attendance numbers are low.
Committing to being a support group leader is an act of courage. We understand how hard it is for people in pain to make the effort to get out of their homes and commute to a meeting, because each of us are facing the same challenges our support group members face. We juggle our own physical and emotional needs while dedicating ourselves to be available for our peers. We know how validating, encouraging, and informative it is to meet people who understand what it is like living with CRPS, and make a conscious choice to create a space for others to have the same experience.
Sharon Weiner, a member of the RSDSA Board of Directors who has been a support group facilitator for nearly two decades, is spearheading the Facilitators Support Group (FSG). Her vision is to develop a strong support network for these groups who provide a vital community for the many CRPS patients who often struggle alone and rarely find people who understand what they are going through. I have been pleased to have the chance to get to know her over the last year, and am inspired by her ambitious goals. She asked me to write a blog post about our group and what we have been up to.
FSG is developing a library of meeting guides to help support group leaders organize their meetings around practical, applicable ideas about living with CRPS. As a facilitator, I am constantly looking for good content! Sharing resources with my group provides a central theme for the meeting, and a starting point to talk about how we cope with or overcome the difficulties we face.
The first guide is set to premier just in time for June, which is National Safety Month. It is chock full of ideas about things you can do to make your home safer and steps you can take now to be better prepared in the event of an emergency. This big topic is broken out into four sections: medical records and medical preparedness; household and personal safety; disaster awareness and planning; and suicide and crisis management. Any one of these subjects could be the centerpiece of a support group meeting.
We hope every RSDSA support group will take advantage of these resources and come together as a community to raise awareness about living safely with CRPS during National Safety Month.
I don’t know how many of my readers have been to a support group meeting, but I hope you will be motivated to see if there is an RSDSA support group in your area. If not, please consider starting one. There is nothing as powerful as shared experience.
The Facilitator Support Group (FSG) is a resource for new and existing RSDSA group leaders. We offer a monthly support call, a Facebook page, and a grant program. We are developing resources for facilitators including how-to publications, meeting guides, and a leader’s conference.
If you are a support group facilitator and would like to join FSG or apply for a grant, please contact Jim Broatch, 877-662-7737 or [email protected].
If you are interested in joining a support group you can find a list of RSDSA registered support groups at: https://rsds.org/find-a-support-group-near-you/.
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Jenny Picciotto is a writer and CRPS patient who enjoys reading and playing the piano. She was a yoga instructor and massage therapist before CRPS changed her trajectory. She currently lives in Hawaii, where she facilitates the Oahu CRPS Support Group.
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