As the support group leader, planning for your meetings is an important step to ensuring the success of your group! Your goal is to have your IC support group be as informative and supportive as possible. Support groups can be as individualized as the patients who attend them. Ask your members what topics they are interested in or if they have suggestions for speakers. However, unless you are a trained professional, you should be diligent in keeping the group from evolving into a therapy session. One way to do this is to choose a specific topic of conversation for each meeting. However, this doesn’t mean you need to prepare a presentation or have a speaker each time you meet. Informal meetings can be very successful, but having a topic can help frame your meetings as positive experiences for those who attend.

The following is a list of popular topics:

Self-Help Strategies

  • Coping strategies
  • Journey to acceptance
  • Journaling
  • Diet and nutrition
  • Stress and anxiety reduction
  • Hints for getting better sleep
  • Common flare initiators

Medical Treatments and Therapies

  • Current IC research
  • Medications for IC
  • Over-the-counter options
  • All about installations
  • Electronic stimulation
  • Alternative and complementary medicine
  • Physical therapy
  • Pain management
  • Sexuality and relationship issues
  • IC and pregnancy
  • Treatment mythbusters

Navigating the Healthcare System

  • Evaluating your doctor/patient relationship
  • Preparing for a visit to your doctor
  • Fundamentals of disability insurance

 Advocacy

  •  How to be an advocate discussion: Discuss ways you can be IC advocates. See the How to Be an Advocate page for ideas.
  • Group letter writing session: Send a letter to your Congressperson telling them about why IC is important to your support group members and urge them to support increased NIH research funding for IC. Find out how to contact your Congresspersons and view a sample letter here.
  • Voices of Hope blog discussion: Read a Voices of Hope blog entry and discuss as a group. Write your own blog entry (individually or as a group) and submit it to Voices of Hope at icamail@ichelp.org.
  • Other advocacy ideas.

Fun Topics

  • Share ICA YouTube videos with your members
  • Share ICA webinars with your members
  • IC friendly vacation ideas
  • Recipe exchanges
  • Hints for the holidays
  • Considerations for travel
  • Getting friends and family on board
  • Books and other valuable resources for IC patients

Check out Handouts in the LeaderKit for information about free handouts on key subjects of interest. Additionally, you can pass out ICA Resource Materials Guides to group members so that they may order additional information on a given subject.

Alternate Meeting Ideas

Remember, your meetings don’t all have to be about IC education. Plan a “non-IC” IC support group meeting now and then to keep the fun in it! Even without an IC topic, the patients will open up and talk about their feelings and experiences with the disease.

  • Meet at a restaurant. Call ahead to learn what IC safe foods they offer and have a menu prepared especially for your group.
  • Hold a bladder friendly pot-luck and recipe exchange.
  • Organize a holiday cookie exchange (bladder friendly or not).
  • Have a scrap-booking afternoon.
  • Set up a date night: Plan an event where the spouses can attend in a social atmosphere. No IC talk allowed.
  • Coordinate a letter writing campaign to a local news station, a talk show such as Oprah, etc. to help get the word out about IC and educate the community.
  • Plan a holiday party where everyone brings a toy for the Children’s Hospital, Toys for Tots, or something similar.
  • Invite an exercise therapist who is familiar with IC to teach simple exercises.
  • Arrange an art therapy session. Have an art therapist come to talk to the group (you might be able to get a student) about how art can help with a chronic illness. Have them lead your group in either individual or group projects.
  • Organize a campaign for political awareness or media awareness as a group project

IC support groups are informational and not intended to be group therapy sessions. These groups are more successful when they are not monopolized by an IC patient seeking group therapy or support for mental health issues related to chronic illness. These types of groups are best left to professionals.

Revised Monday, August 31st, 2015