If you're living with a chronic illness, you're in the right place.

Monday, June 24, 2013

Support Groups

5:25 AM Posted by Tiffany Taft , ,
Sup·port  [suh-pawrt, -pohrt]  
verb (used with object)
  • to bear or hold up (a load, mass, structure, part, etc.); serve as a foundation for.
  • to sustain (a person, the mind, spirits, courage, etc.) under trial or affliction.
Group  [groop]  
noun
  • any collection or assemblage of persons or things; cluster; aggregation.
  • a number of persons or things ranged or considered together as being related in some way.
I....state your name...
Early on in my Crohn's diagnosis, I went to a support group.  I remember that it was run by a nice, older couple and the turnout was relatively small.  There were a few regulars and a few of us newbies in attendance and we shared our stories.  I remember hearing some pretty abysmal, and quite frankly scary, things about failed treatments, surgeries, and an overall pretty lousy quality of life  I left a bit disconcerted but decided I'd go back the following month to see if any new faces showed up, and if the first meeting was just a fluke in its negativity.  It was roughly the same crowd, except another woman around my age (mid 20s at the time) also came as someone new to the IBD world.  The vibe in the room was similar to the previous meeting, so I sought out the other woman after it was over to chat.  She shared in my feelings of unease about what we'd heard, and we both wondered without actually saying it if this was going to be our fate.  I went a third month and the woman I'd spoken to wasn't there; I never went back.

I've heard similar stories from clients who have sought out support groups to help them cope with their illness.  This is not to say that support groups can't be wonderful places where friendships are forged and people who would otherwise feel completely isolated and misunderstood are able to find some camaraderie. When clients ask me about whether they should seek out a support group, my answer is always yes with the caveat that it may take some time to find the right group, the best fit for them.  

Here are some things we know about support groups from our friends in the research world.  People who utilize chronic illness support groups:
  • Report a more positive outlook on life, greater satisfaction with the medical care, an increased sense of mastery, increased self-esteem, and reduced feelings of shame and isolation.
  • Experience less anxiety and depression, have fewer doctors visits, and the impact of their disease on work and social relationships is reduced.
  • State that they get positive benefits including discussing their illness with others, increasing their knowledge, adapting to life with their condition, learning about and seeking alternative coping strategies, increasing motivation, having a sense of belonging, establishing new friendships, and helping others.
  • Report less stress, greater family involvement, and better symptom control.
Well that all sounds awesome.  So what about my (and others') experience that wasn't so positive?  Can there be negative  effects from using a support group?  The answer is yes, there can.
  • Talking about your illness, or hearing about group members' experiences can stir up uncomfortable feelings.  Depending on who the group leader is (a patient, medical professional, or mental health professional), he or she may not be skilled enough to manage difficult situations. 
  • Being exposed to people who are worse-off that you are may increase anxiety or worry about your own condition.  Hearing from those who are in remission or are feeling better than you are may increase feelings of depression.
  • Sometimes 1 or 2 people in the support group may not respect boundaries or follow rules. This can especially be a problem in online formats that aren't moderated.  We've all come across a troll in our online lifetime.
  • There is risk of over-dependence on the group, especially for online formats.  If you're spending so much time online in a group forum that your outside contacts and responsibilities are suffering, there may be a problem.
  • Information that is shared in some groups may not be reliable.
The takeaway point of this?  Support groups have the potential to be great resources for you.  It's a matter of finding the right one, in the right format, and integrating it into your life in a healthy way.  

Have you tried a support group since being diagnosed with a chronic illness?  What has your experience been like?

Best,
Dr. T