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Support Groups

Posted by Connie on Tuesday, July 22nd, 2008 at 10:42 pm and is filed under Chronic Illness, DisABILITY Advocate, Support Group.
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How do you feel about support groups that are centered around a specific illness or health problem? I run a support group for people with chronic illnesses which hasn’t been meeting for a few months due to my being too sick to take charge of things.

I’ll be starting it up again in September and I’m looking for ideas to keep the group positive. I don’t want it to be a pity part but a group where we can find solutions to our problems or at least feel heard and understood. What ends up happening sometimes though is that we have several very lonely people in the group who don’t get out much. The group is their time to socialize which is fine, but it’s also their time to complain.

I can sympathize but I can’t let them control the group and have other people just listening. I’m not good at getting the conversation turned around to another topic. So we usually end up listening and I end up getting worried that the other members are getting annoyed. Our meetings go on too long also because of this. This is difficult for me as I’m there early to set up and then have to stay to clean up. I’m exhausted on meeting days.

Any advice or suggestions? If you are a member of a support group or run one, please let me know some of your ideas.

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6 comments

  1. I don’t belong to any groups other than some online groups but, I have found some very useful information through them. Maybe with your group, start with asking the group about things that have worked for them to make them feel better? Even things that are not illness necessarily directed at their illness. A few of the things that I do that help that are to take a long hot bath with scented bath salts. While this helps greatly with my Fibro, it also gives me a mental break. Reading mysteries or any other good books. Blogging helps me. Then ask them for things that have helped with their illness even if they no longer work for them, they may work for someone else. If all else fails laughter is always good medicine.

    Mandy’s last blog post..A Mothers View On Autism And Michael Savage

    comment by Mandy — July 23, 2008 @ 10:35 am
  2. Dear Connie,

    Here are some ideas that I hope may be helpful. It may sound corny, but when I was thinking of these, in my mind I found myself listening to the melody and lyrics of that song that goes…
    “Ya Gotta Accentuate the Positive…”

    1. If you have any group rules or guidelines, consider adding a new group guideline that explains how an important purpose of your group meeting is to help all members to recognize and share their strengths, successes (no matter how small) and hopes, and not just their problems. Then consider having a member read this and your other group guidelines at the start of each meeting.
    2. Help your members share their good experiences (as well as the strengths, abilities, and good qualities they see in other members!) by reminding members to contribute their insights, quotes and information on helpful resources or literature they have used, as well as practical coping techniques that have worked for them.
    For example, you could build this into the structure of your meetings by regularly starting each meeting with introductions and a brief “go-round” that permits each member to briefly answer a questions that draws out a positive experience, e.g. having them answer a question like “Describe one good thing that you’ve experienced (or has happened to you) since our last meeting?” Or a similar question could be developed that helps people to share their successes, joys, and people/things for which they are thankful, etc. Other examples?
    3. Another way to help members share good experiences is to consider having members set personal goals toward the end of each meeting and then report back at the next meeting how they met that goal, or (if not accomplished) what they will try to do to address it before the following meeting. This is especially good if you have a member who may be a chronic complainer or whiner.
    4. Encortage members to seek out and share good news gathered from outside the group related to your issue or disorder, e.g. new research results, helpful magazine articles, news from national organizations and agencies that deal with your issues, etc.
    5. Encourage those who are now doing better or recovered to be sure to remember to come back to help others who are not. Bring your more experienced members or “veterans” back by encouraging them to “give back” and help others.

    What additional ideas might others here have to suggest?

    comment by Ed Madara — July 23, 2008 @ 5:33 pm
  3. In thinking about it more, two old quotes came to mind…

    “Tis better to light a candle,
    than curse the darkness.”

    (We need more people lighting candles at meetings, and less sitting on the pity pot, cursing.)

    and

    “Self-pity is our worst enemy
    and if we yield to it, we can never do anything good in the world.
    Is there anything worse than being blind?
    Yes, a man with sight and no vision.”
    – Helen Keller

    Does anyone have another quote or suggestion that might help other members focus on their half-full glasses, rather than that same half-empty one?

    Take care and hope,

    - Ed in New Jersey

    comment by Ed Madara — July 24, 2008 @ 12:56 pm
  4. This site has some great quotes:
    http://www.2heartsnetwork.org/chronic.htm

    Sherril

    Sherril Johnson’s last blog post..In Memory of 9/11: From a Canadian’s point of view

    comment by Sherril Johnson — September 13, 2008 @ 3:32 pm
  5. Connie,

    I founded a local (in-person) endometriosis support group in August 2001. Through the group, I have met some fantastic, strong, positive women who are generous, supportive, and thoughtful!!

    I am very grateful that I’ve had the opportunity to meet so many brave women! That said… I think that support groups, by their very nature, do sometimes inevitably veer a little into the “pity party” zone.

    In my group, I try to capitalize on the opportunity to match up longtime group members with newer members whenever possible. This isn’t always an option because we never know who will be showing up until meeting night (despite my many attempts over the years to determine who to expect via RSVP requests, etc.)!

    If things start getting too “down”, I try to use humor when possible to diffuse the tension and distract those who are, frankly, depressing others with their self-pity. I may crack jokes about how we could all be patients on the show “House” (a TV show where a team of doctors works together to solve the problems of “medical mystery” patients whose problems are too complicated for one or two doctors to possibly solve).

    I really have to “go with the flow”… Often things depend on *WHO* attends a particular meeting!! I usually have to go by the energy in the room based on who is there, their personalities, and what issues are bothering them that month.

    One meeting might be more upbeat and another might be downright depressing… *IF* I don’t step in pretty *assertively* to stop things from going downhill!

    No one wants to leave a meeting feeling worse than when they arrived (!!!!) so I feel it’s my responsibility as meeting facilitator to keep things from veering into the “pity party” zone!

    In our meetings, we typically take turns sharing our concerns, success stories, “hot topics” (i.e. if someone needs to decide if/when to have surgery, they tend to get extra floor time and the other group members can brainstorm to make SUGGESTIONS — *NOT medical advice* — just suggestions based on our collective personal experience).

    Those who wish to “pass” their talking turn and just listen are welcome to just soak things in. Everyone is at different stages so some people just need to listen (or even take notes)…

    I try not to dominate the conversation and often give up my “talking turn” if newer group members are present & need that time to ask questions or relay their story (i.e. a recent diagnosis, their journey from when they were diagnosed to when/how they found our group, etc.)…

    Meetings can get emotional and (happy) tears are commonly shed when brand new members attend because it may be the first time they have felt like people “got it” before in their lives!! They are RELIEVED!

    Some meetings I barely talk at all (hard to believe when reading this lengthy comment, I know!!) and just let the others exchange ideas & resources while I take it in and provide any clarification necessary. (I’m 39 and I’ve had endo for 26 years now).

    To facilitate the conversation smoothly, I keep a close eye on the clock & on people’s body language (i.e. detect if people look annoyed or bored with someone else droning on) and detect early on when people are going into the “pity party zone”.

    While I try not to interrupt people mid-thought, I *DO NOT* hesitate to step in when needed (when they stop their pity party to breathe… ha ha) to focus back on *ANYTHING* positive the “downer” person might have just said… OR to move on if needed.

    If someone is truly all doom and gloom, I gently try to switch to the next person’s turn. This usually works pretty well.

    Few people insist on continuing to dominate the talk time once the turn has shifted to the next person. (We usually go around in a circle but not always. Sometimes we ask who wants to talk first, who has pressing issues, etc.)

    So much depends on who is present and how many are there as well. The more people there, the less “talk time” per person.

    Shortly before I started our support group, I took a class from the Mental Health Association in my nearest city on “facilitating self-help groups”. This class was VERY helpful!!!

    Not only did we learn the importance of making suggestions while *NOT* giving “advice” (important so that people can take ownership of/responsibility for their own healthcare decisions and bodies… AND also from a liability standpoint!)… but we also learned various methods to keep the conversation flowing and not get “stuck” on negative talk that brings everyone down.

    I can honestly say that I *ALWAYS* feel better walking out of a meeting than when I walked in…no matter HOW sick or exhausted I might be with my numerous chronic illnesses!!!

    Having that connection with fellow patients is empowering and lifts spirits! Many group members have expressed similar sentiments at the end of a meeting or in a follow-up email afterwards (i.e. “I’m really glad I made the effort to make the meeting. I found it really helpful for xyz reason”).

    I *REALLY* try to tailor and customize each meeting based on the needs of those present at each meeting. Yes, this requires thinking on my feet. Yes, it can tax my brain sometimes! However, I have found that my best planning ahead for meetings often goes down the toilet anyway… So I’ve learned to be less “obsessive” about trying to “plan” meetings and just be more laid back.

    This goes against my somewhat high-strung personality style but for our group it seems to be really key. I’ve learned I must “go with the flow” for meetings. It can actually be exciting to just let things unfold naturally rather than trying to “plan things out”.

    I have also scaled WAY back on my “set up time”. Rather than lay out brochures on a table & such, I just put one of each brochure in a Ziploc bag before the meeting (at home) and give a bag to each new attendee OR I scan documents and email them as attachments to save paper.

    My fibromyalgia arms just got too sore to carry all of those materials to each meeting. I have cut back on many of the “nice touches” I used to have in the early years because (1) I’m way too tired & sore (2) the most important part of the meeting is people sharing things, supporting each other… and (3) people mostly want to be heard/feel validated.

    The brochures are nice but not always necessary. I use email much more for that stuff now… I have barely any setup or cleanup time now and I gave up on refreshments long ago!

    We like to use every moment of the meeting to talk. So we don’t bother much with brochures of refreshments anymore. We focus on the nitty gritty and use every minute of those meetings! The time flies!!

    I urge our group members to give feedback on how the group can best meet their needs. I may not always get many responses, of course! People are sick & busy!

    However, the ones who DO reply often are very insightful and helpful at pinpointing how our group can serve the most people with the most appropriate support.

    Low turnout is always an issue with support groups for chronically ill people. This is probably our # 1 obstacle.

    If you are blessed to have more experienced people on hand in a meeting, try to use this to your advantage. Ask them to share what works for them.

    While everyone’s bodies are different, often having veterans share their successes helps everyone! The newer members learning coping techniques and the “veterans” feel helpful, empowered, and useful! It’s a win-win!

    In cases like this, I try to get the veterans to really elaborate on the methods that help them, where to find local resources that are relevant, etc.

    Often our group members learn more about available local resources from each other than from their own doctors!

    This is especially true for alternative medicine modalities!!!!!

    Jeanne :)

    P.S. I’m a big quote-lover too. One site that I occasionally use is: http://www.thinkexist.com/. It allows for searching by categories of quotes (i.e. inspirational quotes). Also, Foundation For A Better Life (http://www.forbetterlife.org/) has not only great quotes but other resources too. I hope this helps!!

    Jeanne’s last blog post..Endometriosis Blog: Infertility & Miscarriage — “Letter To A Friend”

    comment by Jeanne — September 15, 2008 @ 11:46 pm
  6. Connie,

    One more thing as far as meetings going on to long. Our group meets from a set beginning time to a set ending time. Period.

    The library where we meet closes at 9 pm. We are to vacate the room by 8:45 pm. Yes, sometimes we can’t shut up and the library clerk nicely reminds us it’s time for him to lock up the room.

    Yes, sometimes the conversation then carries out into the library’s parking lot briefly.

    However, I try to be driving home by 9:00 pm or so. If someone really wants to talk more, I just tell them to email or call me to follow up and then I book out of there!

    I’m too sick to linger endlessly. I set boundaries so that I’m not jeopardizing my own health!

    :)

    Jeanne

    Jeanne’s last blog post..Endometriosis Blog: Infertility & Miscarriage — “Letter To A Friend”

    comment by Jeanne — September 16, 2008 @ 12:02 am

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