Until she was 25, Rachel* was completely healthy. She ran marathons and rode horses, and later she was active in her job as a microbiologist. Suddenly, she developed joint problems. She was first diagnosed with Lyme disease, then a genetic condition called Ehlers-Danlos syndrome, which makes her joints move beyond their normal range of motion and causes extreme pain.
Her health deteriorated rapidly. “Compared to even where I was just a couple years ago, it’s been a very quick decline to me,” Rachel, now 38 and living in Bucks County, Pennsylvania, tells Health. “But amazingly, as my health has been going down, my spiritual and emotional well-being has been on an upward trajectory. And thank goodness for that, because I don’t know how I would have gotten through otherwise.”
Rachel credits this to Chronic Pain Anonymous (CPA), a fellowship modeled after Alcoholics Anonymous that applies the 12-steps approach to help people cope with chronic pain and illness. Founded in 2004, CPA has grown slowly and remains under the radar. Today, the group estimates it has no more than 350 members nationwide—a small percentage of the reported 50 million U.S. adults living with chronic pain, according to a 2018 report from the Centers for Disease Control and Prevention (CDC).
A 15-year member of Alcoholics Anonymous, Rachel was not only familiar with 12-step recovery fellowships but indebted to one. “AA saved my life and gave me a life beyond my wildest dreams, but CPA has brought it to a whole other dimension as well,” she says.
CPA meetings are held in churches, community centers, and other public spaces in 16 states and Canada. But the group also offers virtual meetings via phone, video, and text-based forums. Many members call in or log on from their bedrooms or from treatment facilities. While their health issues vary widely, members are united by their ongoing pain and illness—and their desire to recover. CPA defines recovery this way: “The ability to live peacefully, joyfully, and comfortably with ourselves and others.”
Unlike a 12-step program for alcoholics, there’s no abstaining from chronic pain. “You can’t go on vacation from it,” a co-founder of the group tells Health. There’s often no way to control it, as the first step of CPA acknowledges: “We admitted we were powerless over pain and illness—that our lives had become unmanageable.”
But CPA helps people understand that life isn’t over just because it’s restricted by pain. One of the group’s goals is to help members discover “how I can have a life I love, even with this illness,” the co-founder says.
The facts about chronic pain
People have always lived with chronic pain. But in recent years, medical professionals have begun to take it more seriously and even view it less as a side effect or symptom and more as a health condition of its own. An estimated 22% of American women live in chronic pain, and approximately 18% of men do as well, according to the CDC report.
Treating pain is notoriously complex. No one medication, surgery, or therapy can ease it for every patient, anesthesiologist Shravani Durbhakula, MD, assistant professor in the division of pain medicine at the Johns Hopkins School of Medicine in Baltimore, tells Health. “It’s not something we can treat as easily as other conditions,” she says.
management typically involves physical therapy, medications, and mental health interventions like cognitive behavioral therapy, says Dr. Durbhakula. If these mainstream treatments don’t offer relief, a patient might try alternative options like biofeedback, osteopathic manipulation, or acupuncture.
If the pain persists, a health care team might next consider steroid injections or nerve blocks, she says. “We would like to have more options to treat our patients, especially non-opioid therapies in the midst of this opioid crisis. We really do have a limitation of medications, and the drugs that we do have work for some people, but there are people none of them really work for.”
The physical pain is always a struggle for patients. But the mental and emotional anguish takes a heavy toll as well. Living with pain can lead to depression, , and isolation, as a person starts to withdraw from the daily activities that worsen the pain, pain psychologist Heather Poupore-King, PhD, clinical assistant professor in the department of anesthesiology and perioperative pain medicine at Stanford University, tells Health. “If you’re not engaging in things that are meaningful to you, it predisposes you to problems with mood,” she says. “Canceling lunches or stopping working, you become isolated and less involved in meaningful activities.”
Chronic pain forced Jan, 66, a 10-year CPA member living with in Phoenix, to give up bicycling, leave her job as an accountant, and stop babysitting her grandchildren. “There were just so many things I used to do that I couldn’t do anymore,” she tells Health. When she first joined the group, she was experiencing sadness, depression, and grief because of all her illness took from her life. Joining CPA taught her that it was OK to grieve what she lost. She was able to acknowledge the sadness, feel it, and then move on. “One of the slogans we use is the three As: awareness, acceptance, and action,” says Jan.
Feeling less defeated thanks to CPA, Jan started her own bookkeeping business she could run out of her home as often her pain and fatigue allowed. “I’m very happy with my life,” she says. “I’m not glad I have this condition, but it has brought so much into my life that I wouldn’t have had, and I’ve learned so much and grown so much that I can see a lot of positive.”
This kind of acceptance, as well as practicing mindfulness, can help people living with chronic pain “bring purpose and meaning to their life,” says Poupore-King. “Acceptance exercises are really about identifying what are your values in life—what do you care deeply about, how did you show up for yourself and others in your life—and trying to match your behavior on a day-to-day basis in line with those values.”
“Chronic pain is often a kind of silent illness,” says Dr. Durbhakula. “People walk around essentially with a mask on; others don’t necessarily understand what their day is like if it’s something you can’t see.” Connecting with people who have similar challenges, however, can make chronic pain patients feel less alone. “Being with other people who get it, who are in the same boat, they give us encouragement, we see how someone else handled something, and we learn from each other,” Jan says.
Adds Poupore-King: “We know these psychological and behavioral factors make a huge impact on living a full life with the pain they have, yet most patients have never heard of [these treatments.] What a tragedy to have to suffer in silence and not get the help they deserve.”
What a Chronic Pain Anonymousmeeting is like
Jan attends an in-person meeting weekly in Phoenix; Rachel usually opts for video meetings and joins at least once a day. In the video meetings I observed, between eight and 15 participants—mostly women—logged on, introducing themselves by first name only, as in AA. Many expressed their gratitude for the other faces on their computer or phone screens that day. While it’s fine for members to share the illness or condition that’s caused their chronic pain, not everyone does, and that’s OK, too.
The leader opened the meeting with the serenity prayer and a moment of silence. A volunteer then read the 12 steps of CPA before participants launched into the meeting’s discussion. Depending on the group, members might talk through a particular step they’d been working on or discuss a reading in a CPA-approved book like Stories of Hope: Living in Serenity With Chronic Pain and Chronic Illness. With their devices on mute, many members held up their hands in the shape of a heart to communicate support for whoever was speaking.
I recognized several faces the second time I joined a meeting; participants told me they often logged on for two or three meetings each day. Some were clearly calling in from care facilities. Others were sprawled on a couch or a bed at home. Several snuggled with pets while they listened in. A few people cried.
“Going to the meetings every day has really helped me believe in a very general sense that I’m OK as I am,” Irene,* a self-described former workaholic living in Illinois who has belonged to CPA for eight years, tells Health. “I’m a lot more grateful, and I just take it one day at a time—sometimes one hour at a time. Today, where I am, it’s a beautiful day and I have windows. I probably won’t get outside, but I get to see how beautiful it is.”
Before Irene joined CPA, she hadn’t thought of applying the 12 steps she learned in AA to the that confined her most of the time to a special chair. Still looking for a medical fix when she first attended a CPA meeting, she was quickly won over by the other members. “The people there had something I wanted,” the 54-year-old recalls. “They seemed happier than I was, they seemed less stressed, they seemed at peace.”
CPA has taught her to be more compassionate, both to her own body when she’s feeling especially bad pain and for others who don’t always understand what she’s going through. “I’d tell them there was no fix, and then I’d have a good day, and they’d say, ‘It looks like you’re getting better!’”
Regular meetings also help members cope with the struggle of getting doctors to take their chronic pain seriously. “I feel stigma from doctors,” says Rachel. “It’s easy to be dismissed.” Thankful to have finally found a health care team that’s supportive, she now passes out flyers in doctors' offices in hopes of publicizing CPA so the group can reach others who might benefit from meetings.
Along the way, Rachel has also had to cultivate more compassion for herself. “You’re not crazy, you’re not a lazy person—there is a lot of shame and blame and guilt about the things I want to do and can’t do,” she says. “What really has benefited me beyond words is that it is accessible by video or by phone, so I am able to reach over, grab my iPad, and attend a meeting with people who are so open, honest, and encouraging.”
Taking pain day by day is one of the principles of CPA. “If I’m going through a period of more pain than usual or more fatigue, I’ll start to get depressed and I’ll start to have fear for a few hours or a day or two,” Jan says. “Then I’ll go, ‘hey, wait a minute, I have a program I can use…we remember we can call somebody or turn to the literature or the tools we’ve learned or go to a meeting.”
The power of an emotionally safe space
Rather than swap pain treatment strategies, members bolster each other emotionally and mentally. They share “tribal wisdom” in a “non-judgmental, compassionate atmosphere” about living with the unpredictability of their conditions, accepting their powerlessness over pain, and recognizing their needs and the needs of others, as two members put it to me.
After the formal end of a meeting, the conversation opens up for “fellowship,” Here, CPA members are freer to express themselves outside of the structure of a meeting.
“CPA is why I’m alive today,” one member told me during fellowship. The comment resonated with several others who had remained logged into the video chat; they agreed that the biggest difference in their lives before and after joining CPA was that they no longer feel suicidal, that they’re “looking forward to living, not just surviving,” as another member explained it.
Suicidal thoughts are common among chronic pain patients, Poupore-King says. “How am I going to live with this for the next year, five years, 10 years—and do I even want to?” patients often ask themselves. “Part of something like a support group is it gives you hope and validation, and we can never underestimate the power of hope.”
*Names have been changed.
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