Chronic Pain Isolation – Start a Support Group

Chronic Pain Isolation – Start a Support Group

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.

Jenny Picciotto

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.”

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Authored by: Ed Coghlan

There are 11 comments for this article
  1. Carmen at 12:17 am

    Finally someone in Hawaii!!!! Yay. Jenny, I would love to talk to you about this as I was just talking with my pain management doctor here in Hawaii about the need to advocacy in our area as there doesn’t seem to be to many involved over here. I’m on Oahu and could you please contact me at wrmsmiles@aol.com. Mahalo……..Carmen

  2. Krissy at 11:11 pm

    Good comment, Sandra. And just think, these politicians, especially the young ones, may someday be in the pain we are. I would not wish it on them, but at least some will have to look back and realize what happened!

  3. Bob Schubring at 2:58 pm

    My thanks to Jenny for sharing this story. I appreciate especially, Jenny’s comments about social anxiety.

    People fear sharing our stories of battling illness, because we lack good answers. When I first started up a support group, what felt futile was the fact that I wasn’t making much progress with my own symptoms.

    What helped, was realizing that I had some skills at writing and public speaking, that I could teach other patients to use. So what started with me getting in a car crash and joining two friends who had chronic pain issues, after learning the ropes, became very helpful in many ways.

    Having a disability is not the same thing as being totally helpless. But when we’re stressed out over something we need but cannot do for ourselves, it feels as if we are helpless.

    That’s the limit we overcome, by teaming up.

  4. Krissy at 2:37 pm

    Jenny, good for you! As a fellow pain patient, I feel proud when I read stories like yours — proud of you for sharing yourself and your conversation with others who need a community too.

    I was very isolated a couple of years ago, so I began to do some research and reading about pain and the diseases I have. Then I began to see about the diseases others have that cause great pain. Soon I started posting things on FB, but also soon found that I was losing friends and no longer hearing from my small family (who are so precious to me). So I stopped using my personal page and joined several groups. It was too late for me to have retained those I lost; I am an enthusiastic person and I blew it by posting way too much information related to me. I hadn’t been a Facebook user before this and it took some time to realize that FB is not for posting about one’s own health! That’s why we have groups.

    I went through a rather depressing and embarrassing time of it for many months trying to accept that these people would not be in my life anymore, and that others would just “show up” once in awhile to make it look like they were “still there for me.” It took time for me to crawl out of that and try to let it go.

    Now I am a member of some 30 groups (not active in more than a few, but appreciate the information I can read from the others). The moral is, I do have friends — tons of them — from all over the world. That’s a nice feeling. It will always hurt that my other “people” don’t care, but I feel surrounded by love even though I’ve never met one of these people in person.

    Keep up the good work. It’s always nice knowing that at any time of any day, if we don’t feel well enough to work, our friends in our groups completely understand. They don’t have to even be a big part of a conversation, but we know we are there for each other at any given time.

    Now, if we could get the rest of the world to understand…we’d be in great shape! But what you are doing is vital. While helping each other in your group, you are also contributing to spreading the word that people with serious, chronic pain conditions have a very different life than those who are healthy.

    If you haven’t already done so, I would urge you to take your information to your local newspapers, online news and TV/Radio in Hawaii to see if you can get some publicity out for the non-painers to see. All you have to do is write one story and send it to each medium. You don’t need any formal press release, just a good, solid statement and some reasons why you think the country needs to understand us and pay some attention to what we go through.

  5. Mark Ibsen at 10:36 am

    It seems to me that SHAME is a bankrupt emotion that all the chronically ill seem to manifest.
    A
    Radical form of not belonging.
    And
    We All Belong.

    Thank you for giving a place for us to belong.

  6. Dave at 9:45 am

    kudos to ms Picciotto( gee that sounds like an italian dish to me) for helping people in pain and addressing a social evil in pain care.
    Whilst government and medicine promote pain care as being sound- it shows how far removed they are from the reality of pain care- and they isolate themselves from people in pain and hence people in pain become isolated.
    The powers that be dont wish to see hear or know about their own evils or that they are not the people they pretend to be. They are the problem and not the solution. And none so blind as they that will not see.
    It is up to people in pain and those that genuinely care for and about them to see and start changing the rest of society to make it safe for people in pain. Failing that- as i have said before- there ill be a continuing escalation of failure in pain care with more people in pain abandoned to being the “lonely abandoned folk: that Patrick Wall wrote of.

  7. Katie Olmstead at 9:31 am

    I have thought about starting a group, thought about it many times. I am used to facilitating groups that I run through the Unitarian Society so the how-to’s don’t concern me. I look in the local newspaper at all the support groups and there isn’t anything for people with chronic pain, let alone CRPS (which I have). But here’s the rub. I get tired. I get very tired. I enjoy facilitating, I have good organizational skills, but the thought of having to show up or run a group is daunting. I don’t know if I can overcome that barrier.

  8. Mike Karnyski at 9:25 am

    I belong to a Support Group and it is the best thing I have done,we meet once a month to talk,laugh and sometimes cry.It is called the:

    RSD/CRPS Support Group Of Buffalo and WNY.

    If any one in the Buffalo area is interested please let me know and I will give you the information.My email is MKarnyski@gmail.com phone number (716) 631-0193.

  9. Rk at 8:45 am

    Too much pain to go anywhere and now too embarrassed by my nasty teeth. That will never be able to be fixed. I haven’t dated in 3 years 4 months.due to all of this plus pain not being treated properly

  10. Sandra at 5:47 am

    This is Great. We can then have enough people to change political views by the next election and smaller voices along the way. The politicians was the one that took medication away from chronic pain people. It was not coming from the goodness in their heart, but does anything. We have to support our chronically ill . Mother, grandmothers, vets and others that can not help themselves. They did not ask to spend a life of pain and suffering.
    Oh yes they want to call everyone with chronic pain a addict, you know I wish we were then we would know we would have a end with our severe pain. It would be so much easier.