“There are days when I don’t feel like I’m part of society,” says Jennifer Susskind, a 47-year-old health-systems consultant who has Ehlers-Danlos Syndrome, a connective tissue disorder that often leads to joint and musculoskeletal pain. “It’s not because I’m not able to do things. It’s just that nobody else understands what it’s like being in pain all the time. When it’s hard to fall asleep because of pain, it seems nobody else is going through this.”
Few conditions can make a person feel as lonely as chronic pain. Nobody else — families, friends, or doctors — can see it or feel it. Nobody knows what you’re going through, except, of course, other people with chronic pain. That’s why support groups are so worthwhile. They allow you to connect with others and share your experiences.
“The thing we hear over and over in our groups,” says Karen Burt-Imira, M.D., who has started chronic pain groups in three hospitals in Contra Costa County, California, “is ‘Since I came to group, I’m not alone anymore.’ They feel free to be themselves in that context, and they feel supported.”
The idea of a pain support group might seem scary, says Susskind, but she is happy she found one. “It took some time to decide to go,” she says. “The woman I talked to on the phone told me about how her bones kept breaking, and I thought my problems don’t compare with hers. I’m never going there. But the first time I went, it was amazing to meet other people who shared my condition. I hadn’t met people in my situation before. There were a few people I really liked who are my Facebook friends now.”
Chronic pain support groups can be lifesaving. “Isolation or loneliness is a huge risk factor for other health problems,” says Burt-Imira. “Feeling alone is a huge stress. We’re meant to be with each other. When we don’t have that, it can be frightening.”
It’s easy to become isolated when you can’t work or participate in social activities, but pain groups can bring people out of isolation. They can give emotional support, information, practical guidance, and other help.
How Groups Can Help
Information. Group leaders don’t take the place of doctors, but they may have answers to your questions. “For some questions I have,” a man with chronic migraines told me at one group, “it’s easier to ask the group leader on a weekly basis than making doctor appointments.”
Group members also share valuable information. One woman in a pain group was able to get legal help with her disability benefits, recommended by one of the participants.
The back-pain online support group Cyber Hugs suggests some ways groups can inform: “Group members can help you with daily living problems. Should you get a shower seat? How do you arrange the pillows at night to get back support? What are recipes that are easy to prepare and nutritious?”
Group members may know of community resources for food, childcare, classes, and other common needs.
Some groups have organized lessons. The Contra Costa curriculum includes two dozen topics such as building confidence, sleeping better, nutrition, pain medications, and finding reasons to live. In other groups, members choose topics to talk about and may bring in guest speakers. A group might find a psychiatrist or therapist to talk about depression, a pharmacist to explain the issues of narcotic prescriptions, or anyone else the group wants to hear.
Social connection. Psychologist Patty Hennigan oversees groups in Burt-Imira’s program. When they surveyed members, many participants listed social contact as a major reason for coming. “I like the interaction with group members who understand and share chronic pain,” said one. “I get to see the friends I’ve made in this group. Usually I feel better than when I arrived,” said another.
You may or may not find potential friends. Just because others share your condition doesn’t mean you will want to hang out with them. But seeing and talking with other people helps, even if you don’t become close.
Practical help. “In our groups, people become friends and often lend support in very needed ways,” says Burt-Imira. “They offer each other food. They have each other’s back.”
In a multiple sclerosis support group in Albany, California, a wheelchair-dependent group member had waited on a list for years for a subsidized apartment. When his name came up, he needed $1,500 for the first and last months’ rent, plus moving expenses. The group set up a Go Fund Me account, put the word out to friends, and soon had enough money to move him in.
Similarly, when a woman in Hennigan’s group became homeless, a group member allowed her to park her truck in the member’s driveway and use their bathroom until she found a place to stay. Also, group members might help each other with rides or childcare.
Motivation. Feeling supported and seeing others succeed can motivate healing life changes. Marsha, whose six years of disabling neuropathy pain had her considering suicide, reported, “I started doing volunteer work one afternoon per week since starting the group. I look forward to leaving the house to attend the group. Most of the time before, I just stayed at home. My depression and suicidal thoughts have eased up and stabilized.”
Kinds of Groups
With millions of people in the United States living with chronic pain, patients and providers have developed all kinds of groups. Here are the various options.
Structured versus open-ended. Some support groups such as the Chronic Disease Self-Management Program at Stanford University are highly structured programs that teach a set curriculum. They ask participants to make concrete action plans every week and report back. The program lasts six weeks.
The Contra Costa program also includes action planning and teaching, but it is ongoing. People can drop in and out whenever they want. It also includes time for open discussion of issues participants bring up.
Structured groups have the advantage that you know what you are getting. They usually are developed by professionals and are known to work. A weakness is that the group ends and may leave you needing more support.
Unstructured groups are more about social support, which may or may not appeal to you. Even structured groups include break times when people can chat and form relationships.
In person versus online. Some people love the social contact of meeting others, sharing and getting to know them. Others find in-person groups intimidating, or hard to get to, or physically demanding. They may find online groups easier places to connect, while others find them too distant or technologically challenging.
A great advantage of online groups is that they are always available. The website Cyber Hugs points out that “[Our groups] are available day or night. Up with intense pain at 2 a.m. and feeling all alone? Log on and you’ll have company — your online friends can help you get through the night.”
Some people might like the fact that they can reach their online group from wherever they are via their smartphone. Online groups also are great for people with mobility issues. However, they don’t give personal contact and may not lead to the real-world friendships and support that face-to-face groups provide.
General pain versus specific conditions. Groups like the Contra Costa group are for anyone living with pain. Other groups specifically invite people living with a particular condition. There are fibromyalgia groups, back-pain groups, groups for headaches, neuropathy, and almost any other pain condition. (See sidebar.)
A condition-specific group will probably give you more information. Everything you hear is likely to be relevant to you. However, most of the issues of chronic pain apply no matter what the specific cause is, so general pain groups work well. You might meet a wider range of people there.
Professional versus peer-led. Social workers, doctors, nurses, or psychologists lead some groups, while people with a pain condition lead others. Psychologist Hennigan says, “Peer-led groups work well. When I was laid off because of budget issues, there was a gap of 18 months before we could restart our group. One of the group members invited people to meet at her home. Six or eight people continued meeting and then came back to the group once we restarted it.”
Professionals may have more information about medical issues, but peers know more about living with a condition. Professionally led groups are usually in a hospital or clinic and may cost money. Either way, the leader’s contribution isn’t as important as the wisdom of the group.
The Downside of Groups
“Although support groups can be very useful, if they become more of a gripe session with folks just complaining and being negative, they can be harmful,” write Bradley Galer, M.D., and Charles Argoff, M.D., in their book Defeat Chronic Pain Now (Fair Winds Press, 2010). “It is important that you find a group of chronic pain patients who are optimistic and hopeful, while still being honest and truthful about their experiences.”
Most groups find ways to stay positive. “We focus on the positive,” says MS support group leader Thad Smith. “People can complain in their check-in, but one of the reasons we have a speaker is it gives the group a positive focus. Groups without speakers can become pretty negative fast.”
Leaders can keep groups from going negative. On the website Dancing with Pain, Sharon Weiner, who runs support groups for people with Reflex Sympathetic Dystrophy Syndrome, says she tells participants, “Everyone is here for support and needs to be heard. We are all suffering, and this meeting is not a suffering contest.”
Another challenge: people who think they know everything and give unwanted advice. “I really don’t want misinformation,” says Jennifer Susskind, “but so many people have given me bad advice, which actually makes it worse.”
Again, good leadership can restrain advice-giving. The rule in Burt-Imira’s groups is: “Share what has worked for you. Don’t tell other people what to do.”
Some doctors warn against letting your condition take over your life. “The geneticist who diagnosed me told me, ‘Don’t go to support groups. Don’t live in your condition. Do something else,’” remembers Susskind. But people often find that support groups actually help them to “do something else.”
Is a Pain Group for You?
Groups aren’t for everybody. Hennigan estimates that of people referred to the Contra Costa groups, about 50 percent come to a meeting, and about half of them come back. “For some, a group is not for them at the time they are referred. Some people are introverted or anxious in groups, and sharing personal or health information in a public way can be scary. Work might conflict or childcare. But things do shift. Later on, our group or another group might work for them.”
Groups work for people at some times and not at others. “When you’re newly diagnosed and need a lot of information,” says Susskind, “groups are great. Or when something changes in your condition.”
At other times, you might find a group less helpful. “People do graduate themselves,” says Hennigan. “Ten years later, they might come back for another course.”
Different groups might affect you differently. You might like one and not another. You have to check them out.
What to Look For
Weiner spends a lot of time participating in and leading groups. “Before joining a group, I make a habit of asking, ‘What are the meetings like? How many members? How long has the group been meeting? Who attends (patients, caregiver etc.)?’ Make sure the group fits what you need.”
You still won’t know if the group is for you until you come to one or preferably two meetings. Ask yourself the following questions.
– Do I like the other people? Are there people in the group with whom I can identify?
– Is the group well facilitated? Does everyone get a chance to speak, or do a few people dominate? Is it organized or chaotic?
– Is the time and place convenient?
– Did I get useful information from the group?
– Do I feel welcome?
If your answers are positive, the group might be a valuable support. It’s not a lifetime commitment and could be worthwhile. You might learn about “treatments you haven’t considered before,” Weiner says, “a better way to handle a situation, or just knowing you are not alone in this.”
Finding a group
Depending where you live, you probably can find groups for people with chronic pain or for people who share your specific condition.
- Ask your health care provider, social worker, or the nearest pain-management center about groups in your area. Churches, community centers, and senior centers often host support groups. Or search the Internet for pain groups in your area.
- The American Chronic Pain Association sponsors groups facilitated by peers. Find a group near you at https://theacpa.org/Support-Groups, call (800) 533-3231, or email [email protected]. If you’re interested, the ACPA will also help you start your own group.
- The U.S. Pain Foundation lists support groups by state as well as online groups at www.uspainfoundation.org/support-groups. For more info, e-mail [email protected], or call (860) 788-6062.
Groups for specific pain conditions
- Fibromyalgia and chronic pain: The National Fibromyalgia and Chronic Pain Association, (435) 752-3551.
- Back pain: Pain Connection, (301) 231-0008. Has groups in Washington, D.C., Maryland, Virginia, and Arizona; conference calls twice a month.
- Arthritis: Arthritis Foundation, (404) 872-7100. Or call your local office.
- Neuropathy: Foundation for Peripheral Neuropathy, (877) 883-9942.
- Headaches: National Headache Foundation.
Online support groups are everywhere on the web, and they’re available any time of the day or night. A search on Facebook, Reddit, or other large social media sites will probably turn up five or more groups for your particular condition. Go to one and look around. If it seems helpful for you, you can introduce yourself with a short post.