Living with Pain: Forming a New Community

Living with Pain: Forming a New Community

bigstock-United-Hands-1589525Last May the American Pain Foundation (APF) closed its doors, thus shuttering Pain Aid, a vibrant online community of people living with pain. This was a tremendous loss for group members and the APF staff that worked with them.

As it was becoming clear to some volunteers and staff that the APF would soon close, a small group of pain care activists recognized the need to form a new organization — one dedicated to developing online support for people in pain and advocating an integrative medical approach to pain care.

They knew that in a patient-centered world a committed group of people living with pain could teach newcomers and their caretakers how to advocate for themselves with health care providers.

In 2004, some of these activists had formed the nonprofit Women with Pain Coalition. Though this organization didn’t develop, the non-profit 501 (c) (3) structure remained intact. When the APF folded, these activists turned to this platform and declared they were doing business as The Pain Community (TPC).

According to Micke Brown, corporate secretary, steering committee chair, and former staffer at the APF, the activists, whose names and biographies can be read at the TPC web site (paincommunity.org), met weekly for several months and made a presentation of TPC to other groups and individuals. TPC will formally introduce itself to the pain world in the next few weeks.

In the service of full disclosure, while interviewing Ms. Brown she indicated that she and other members of the board wanted me to become a member of the steering committee. I have accepted their offer.

Brown stressed that TPC would hold fast to the mission that stresses the importance of support “through an active, engaged community.”

TPC-Logo-WebThe board envisions TPC be a place where patients, their families, and caregivers can come to learn about pain, resources, problem solving, and advocacy. The latter would include learning not only how to form partnerships with treatment teams, but also advocacy with the media and legislators.

Brown says TPC now has about 25 members who pay an annual fee of $25, with some flexibility for those unable to afford dues. New members will be able to participate in the online community for no fee for the first 90 days.

Brown also said TPC will approach family foundations and corporate sponsors in search of funding, but they will never allow one source to become dominant in their finances. They intend to avoid the accusation that they are beholden to any industry. TPC will work to make their funding sources as diverse as possible.

Teresa Shaffer, a colleague of mine from our days at the APF, spoke with me about the online support at TPC. Given the complexity of pain and pain conditions, Shaffer stated that there was a real need to educate people with chronic pain — and who better to help with that education than others in pain? She sees TPC’s online support as providing much needed community and education that will provide newcomers with the tools for self-advocacy.

Along with me, Shaffer believes that online communities are bulwarks against loneliness. I believe that loneliness is as connected to chronic pain as is depression. Together, the two unfortunately stroll with pain patients hand-in-hand.

Loneliness is particularly difficult for people with pain, whose lives have become so constricted that decreasing social contact with others is very nearly inevitable. We also know that this loneliness is fertile ground for isolation and despair.

In the absence of good friends, people living with pain gradually become caught up in their own theories and explanations regarding their pain, as well as increasingly idiosyncratic notions about pain relief. These idiosyncratic ideas will often lead them ever deeper into isolation. And, as any person struggling with constant pain can attest, despair is as tough a foe as the pain itself. Put together, pain and despair can seem insurmountable.

This is where groups like TPC come into play. Not only can they offer education on pain and advocacy, they offer much needed contact with people who know what the person with pain is going through on a daily, even hourly basis.

Spouses, siblings, parents and friends can be supportive, but they often have their own ideas about the pain that the person is dealing with. Those notions are sometimes not only off base, but can undermine the patient’s sense of themselves — leaving the patient not only frustrated and angry, but ever more isolated.

This, Shaffer believes, is where TPC can help. When the person with pain feels utterly cast off and angry at their spouse, family or friends, other more experienced members of the group can educate them about the family dynamics of chronic pain. The new member can learn that whatever they are experiencing, the spouse or family is experiencing very nearly the same thing, though from a different perspective.

In this regard, TPC’s online support can offer empathy that a member can take back to his or her family.

This just one example of the many ways that TPC can support a member.

Shaffer explained that TPC offers a “soft place for a person in pain to land.” They don’t offer cures, but they do offer a ways to deal with what seems an insurmountable problem.

I agree with those readers who might say that this doesn’t cure pain and its associated problems. What it does offer is connections to others who really “get” what pain and despair are like — fellow travelers who know what you’re going through.

With their open arms and hearts, The Pain Community will offer a soft place to land in the hard, jagged edges of a life lived in pain.

Mark Maginn

Mark Maginn

Mark Maginn lives in Chicago where he is a poet, writer and social justice activist. Mark suffers from chronic pain and was a longtime volunteer with the American Pain Foundation. His blog can be found here

The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that!  It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

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Donna Ratliff

Hi Mark. Congrats!!
I’m so glad that more people are creating more organizations to help those with chronic pain, especially advocates from APF. I hope that your new organization will consider advocating to help the federal government to realize that access issues to pain management and the medications needed, have been very severely disrupted by the so-called prescription pill epidemic. We really need more to fight for the rights of chronic pain patients. You mentioned a while back that this is a human rights issue. I totally agree with you. Thank you for the awesome news. 🙂