By Ed Coghlan
Editor’s Note: A major problem for many chronic pain sufferers is isolation. We have heard from literally hundreds of people that others—fellow workers and even family members—often don’t understand what chronic pain sufferers go through. The chronic pain sufferer often feels like he or she has to go through it by themselves.
A number of our readers are very involved in support groups. One of them is Jenny Picciotto who lives in Hawaii. We had a conversation recently about her work in starting up a group and I asked if she would share her thoughts in a brief interview in case others were thinking about starting or joining a group.
National Pain Report: “Why did you decide to start an in-person support group? Was it difficult to start and maintain?”
Jenny Picciotto: “Our support group was started by one of our members who wanted to meet other people with Complex Regional Pain Syndrome (CRPS), a disorder of the nervous system that can result in extreme pain and loss of function. Although there are treatments for CRPS, there is no cure. Because we live in Hawaii, she wondered if she was the only person on our islands who suffered from CPRS. She set up a web site to search for others. Almost a year later, I was the first person to respond. Our third member was a woman I had met at a CRPS conference in California. The three of us became the core of the group. I was eventually asked to be the group leader, and we hold meetings in my home.
Attracting new members has been a process. Surprisingly, our physicians have been reluctant to refer their patients to our group. We set up a new website, got listed on national web sites, and launched a Facebook page. Because we didn’t have enough members to pay for public meeting space, we decided not to advertise through local media. We now have sixteen members.
Maintaining the group is challenging because CRPS is disabling; it’s not unusual for our members to have periods when they can’t get out of the house, or even out of bed. Some members can’t drive anymore. It’s important to understand that attendance at meetings isn’t necessarily a measure of participation. In addition to meetings, we keep in touch through Facebook and by phone.
National Pain Report: “What do you talk about in the support group – for instance what do you think are the top three topics?”
Jenny Picciotto: “The number one topic is treatment. This holds true for newly diagnosed patients and those who have been living with CRPS for a long time. We learn from one another about what treatments are available, emerging treatments, medications, and working with doctors.
Symptoms are another big topic. With CRPS there are a range of symptoms from swelling, burning pain, skin changes, muscle spasms, depression, insomnia, and many others. It is validating to know that other people have had the same symptoms. Talking with someone who has lived through the same thing you are experiencing is perhaps the greatest benefit of being involved in a support group.
Rounding out the top three is coping with the physical, mental and emotional challenges of living with CRPS. There is a sense of loss of self when chronic pain or chronic disease impacts how one relates to the world. Things like work, hobbies, relationships, all these things that can be affected are a part of coping. It helps to hear how others have handled these situations.”
National Pain Report: “With comments I read about our stories and other interaction I have with our readers I strongly sense that isolation in the community is a major problem–Do you find that?”
Jenny Picciotto:”Isolation is a problem, and many factors feed into it. First there is the loss of common activities with your social group. Simply not being able to participate begins to erode relationships. Then there are times when you have to cancel plans because you don’t feel well. If that happens often enough, friends may feel you are unreliable and stop calling or inviting you.
In addition to this, depression is common. Not only does that lead to self isolation, it can also lead to social isolation. Sometimes friends or family don’t understand, or are uncomfortable being with someone who is sick and depressed. That being said, many people are blessed with strong support from family and friends.
At the most basic level, simply knowing that you can’t do the things you used to do feeds into a sense of isolation because you feel left out of activities you once enjoyed. I think this is part of the grief cycle people suffering from chronic conditions experience as they come to terms with their “new normal.”
National Pain Report: “What’s the best thing that’s happened in your group?”
Jenny Picciotto: “I’d have to say friendship. Over time we have become very important to one another. We have shared feelings and experiences that we might not be able to express to anyone else. Even if I don’t see them outside of the support group, just knowing that we are there for each other encourages me when times are tough.”
National Pain Report: “What mistakes did you make (if any) as you got the group up and running?”
Jenny Picciotto: “Traditionally, formal support groups are led by someone who is not a participant in the group, such as a psychologist or clergy member. As a novice, I worried about having a positive message for every meeting, and managing time so everyone had a chance to share. I had to balance being a “leader” with participating as an equal within the group. I got some help.
A national CRPS organization called the RSDSA had an information package about starting a support group. I bounced ideas around with a co-leader, and asked the group for feedback. We also created a group agreement that set guidelines for maintaining a safe environment, providing feedback, and confidentiality. I learned to relax more and worry less.
Talking about your experience with others helps you process the trauma of chronic illness, and listening helps you understand your own experience. It is very organic. Being a member of a support group has helped me on every level.”