The Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) held its 12th Annual Bounty of Hope to Benefit RSDSA on November 3, 2010 in New York City. In addition to fundraising and promoting disease awareness, the RSDSA also uses the event to recognize someone who has made a significant contribution to those living with complex regional pain syndrome (CRPS). The “Hero of Hope” Award is not awarded each year—rather, it is bestowed when the committee feels that someone is truly deserving of the honor. This year, the organization determined that the time was opportune to recognize Sharon Weiner from Bridgewater, New Jersey, and to applaud her efforts on behalf of CRPS awareness.
Using her well-loved and often-used scrapbook, Sharon paused before the big event to recount the events that helped lead to this award. For 13 years, Sharon has been a strong and persuasive advocate for those affected by CRPS, as well as for their family, friends, caregivers, and the medical community. When diagnosed in 1997, Sharon was elated to find that this disease was not a figment of her imagination as health care providers had repeatedly told her since developing intense pain in her hand 12 months earlier. However, her initial enthusiasm was quickly dashed after preliminary internet research returned phrases such as “incurable” and “amputation.”
Sharon accepted that CRPS was a permanent condition but was determined to live a productive life. “This disease was going to be a lifelong issue so I knew I needed to deal with it. My first instinct was to talk with others who had it and learn from them,” says Sharon. However, after attending her first support group meeting, Sharon was disheartened, “Instead of finding a support system and a forum to exchange information, I discovered a depressing and disorganized event,” she states.
“Driving home I was in tears because I thought I was going to get something from this meeting and instead it just made my feelings of isolation and confusion worse.” By the time Sharon had pulled into her driveway, she had processed the events of the evening and made the critical decision to find another way—a better way—to provide support and hope, not only to herself but to others with the condition. She said, “Well, I CAN do it and I WILL do it.” That was the moment Sharon became a voice for awareness of CRPS—a voice that has effectively influenced the lives of so many persons with the condition. Knowing what she did NOT want in a support group, Sharon focused on the positive and in November 1997 she started Living with RSD. Living with RSD is a free support group for all affected by this condition including patients, family, friends, caregivers, and the medical community. She explains the premise of the group, “Living with RSD is truly about learning to live with the condition. We are accepting we have a challenge and we are learning to live with that,” she says.
Although Sharon had no experience running a support group and laughs when she says, “There’s no training manual for this. Trust me, I searched for one,” the organization has set the gold standard, becoming a model for other support groups. Sharon quickly adopted a “learn as we go” philosophy, noting, “Sometimes our ideas work, and sometimes they don’t, but we keep trying new things and improving.” With more than 156 support group meetings under her belt, Sharon has a few tricks of the trade that help create a well-run event.
She cites being organized and having an agenda as crucial components for a successful meeting. An established meeting location and time, sign-in sheets, and new member welcome packets all lend a personal touch and a sense of creditability and professionalism to the organization. Sharon stresses the importance of backup assistance because health issues or scheduling conflicts might present challenges along the way. A meeting box with supplies can be easily transferred to the replacement leader for that session. In addition, Sharon sets the tone for an upbeat and productive atmosphere. “As a group, we try to stay very positive—we just don’t allow it to turn into a negative ’woe is me‘ session,” Sharon explains. She notes that there is a balance between allowing people to express their emotions, while maintaining a constructive and positive atmosphere. “If there is someone who needs a few minutes of attention, I’m going to give it to them—that’s why they are at the meeting, after all. But it’s important to give that person a finite amount of time and then quickly return to the topic at hand in order to continue with the constructive and positive tone of the meeting,” says Sharon.
Over the years, Sharon has brought in a variety of guest speakers and involved the group in numerous activities. New ideas come from a plethora of sources and Sharon credits the other members for their input. “A facilitator needs to listen to what the group needs. If you don’t meet their needs, they’re not going to come back and the whole point of the group is to follow through and to help people,” says Sharon.
Involving members with the organization’s activities helps restore that sense of activity and purpose that people had before developing CRPS. “When we have a project, I’ll ask the group about their ideas and carefully listen to their suggestions. Everyone is encouraged to help. Their self esteem increases as they contribute and become more engaged. Even simple tasks help give people a sense of accomplishment,” she explains.
Sharon uses every opportunity she can to spread awareness to both the lay community and health care providers. She has written numerous articles and enjoys speaking at Rotary Club meetings, health fairs, and conventions in order to educate others about this misunderstood condition. Living with RSD also helped in the effort to pass CRPS awareness legislation in New Jersey. “If we get people educated then we can get patients treated better and hopefully sooner and faster,” she notes.
Sharon has been a resource for others contemplating starting a support group and has provided helpful advice and guidance. In addition to assisting others with their fledgling organizations, Sharon is always thinking of ideas to evolve and grow her own program. She is supporting the INvisible Project,a traveling art exhibit focusing on chronic pain and has recently been asked by a group member to help organize a FUN RUN in her community in another effort to increase awareness of CRPS. Believing there is power in numbers, she is developing ideas to turn Living with RSD into an umbrella organization with smaller support groups under it. Sharon advocated joining forces so that groups can more efficiently and effectively fundraise and engage in awareness events across the state. She admits that “It’s still a dream. Your health is always an issue. You make plans, but things have to go slow.” Sharon is attempting to expand the reach of her support group meetings. She is researching the potential of video broadcasting in order to reach patients in remote areas or those who are not well enough to travel to attend a meeting.
When asked about the “Hero of Hope” Award, Sharon answered like a true hero, “Awards are wonderful, but I don’t do it for that kind of award.” She considers the connections she has made with members of her support group and the influence Living with RSD has had on members’ lives as her true reward. For Sharon, the “Hero of Hope” award reinforces her commitment to living a fulfilling life in spite of this condition and she was elated that her family could be at the Bounty of Hope event and share in the celebration. She credits them as being her source of encouragement. “I have the best support group in my family. They are amazing. I have been fearless in some ways because I know I have their support and love behind me,” she concludes.
When asked how she is able to juggle her various activities and commitments, all while managing her chronic pain, Sharon says, “I like to be busy and I like doing things but I have learned that I have to do some things differently. Now, I have to break tasks into smaller components.” This support group leader truly believes and lives the advice she gives to members of her organization. “Just because you can’t do what you used to do does not mean you can’t do something new. There are many things out there that you can still do, just go out and find them,” she exclaims.
Living with RSD Activities and Meeting Ideas
Because CRPS affects every aspect of the patient’s and the caregiver’s lives, Sharon believes that the programs should include a variety of topics and events, in addition to the standard medical and legal ones. Such diversity and expanded scope helps maintain a high interest level and tends to keep members engaged.
- Growing Awareness: deliver live plants to health care providers’ offices with information about CRPS
- Mental Health Awareness month in May: send cards to mental health professionals outlining the link between chronic pain and depression
- Create an electronic library: provide helpful articles about the association between general health, nutrition, and CRPS
- Show and Tell-gadgets: find and discuss items that assist with daily activities
- Travel Tips: provide information about traveling with CRPS and your rights as a traveler
- Relationship Counselors: focus on the importance of maintaining healthy and positive interpersonal relationships
- Member picnic: interact with members, their family, friends, and loved ones in a relaxed atmosphere