By Ed Coghlan
I was driving with one of our columnists to a meeting this weekend in Southern California and we discussed a number of things, including the isolation that people with chronic pain often feel. Friends and family often don’t really understand what a chronic pain sufferer is going through.
As Rachel Noble Benner wrote in the Washington Post last year “I have worked with people who had full, rich lives as corporate leaders, mothers, athletes and professors before their chronic pain. However, by the time I saw them they were isolated, overmedicated and depressed, and they believed their life was devoid of meaning.”
It’s that sense of isolation that a New Jersey-based non-profit is trying address. Livesupportgroup.com has been started for a very simple reason, to let people with chronic pain get online and talk with each other.
Robin Viola-Pfeffer is the founder and in an interview with the National Pain Report she said, “Social media doesn’t really let you have a conversation—you can comment and others can comment—but a real support group where you can talk with others didn’t exist. We felt it should.”
There are two groups, one on Wednesday and the other on Saturday that meet online and discuss issues of importance to them.
“We have about 300 people signed up—all suffering from chronic pain— and it’s growing fast,” she said. “It’s free, easy to join. It’s been amazing to watch and listen as these groups have developed. People are being helped. There’s nothing quite like peer-to-peer support for chronic pain sufferers.”
Viola-Pfeffer has suffered from Crohn’s disease for 40 years. She and her husband Adam Pfeffer, who serves as CEO, believe the effort can grow.
Steve Ariens, a retired pharmacist who is a contributor to the National Pain Report, has joined the effort. He sees an opportunity for significant growth.
“We are going to launch a third group designed to attract people with fibromyalgia and chronic fatigue,” he said, which is expected to be up and running by the end of March.
Signing up is very easy. Simply register at www.livesupportgroup.com. It’s free. You don’t have to give your full name. It’s designed to be a safe place.
If you choose to participate, let us know what you think about the experience.
By the way, Viola-Pfeffer and Ariens both indicated that they plan to offer their digital infrastructure to other non-profit groups.
Chronic pain affects more people than cancer, diabetes, heart attack and stroke combined. The Institute of Medicine estimates there are more than 100 million sufferers in the United States, costing the nation as much as $635 billion a year in medical treatment and lost productivity.
Follow on Twitter