Anyone does!

All you need is a desire to help people and a willingness to learn about current IC diagnostic procedures, therapies, and research. In fact, most support group leaders start small and grow into their role, learning as they go.


Remember, the role of a support group leader is to provide support, not to dispense medical or psychological advice. Therefore, it is important for you and your members to avoid any behavior that may be interpreted as illegal including the promotion of unapproved products or therapies.


IC support group leaders can be involved in any of a variety of IC support-related activities such as:

  • Planning and facilitating support group meetings
  • Offering education and encouragement to IC patients via the phone and/or email
  • Establishing and moderating email listservs and social networking groups
  • Connecting with physicians, nurses, dietitians and other medical providers

Once you have decided to become a support group leader, consider your skills and choose a support group format that is in line with your likes and abilities:

  • Are you comfortable leading group discussions and speaking in public? Do you have time to organize and plan two to six support group meetings per year? Consider starting a group meeting support group.
  • Are you willing (and do you have the time) to take phone calls from local IC patients who need support and understanding? Then maybe being a phone support person is a great start for you.
  • Are you a tech savvy person who likes to connect with people online? Then maybe establishing an online support group for local IC patients would be the perfect place for you to begin.

Finally, the best way to start a support group is to find a partner (or two) to help. Different leaders not only bring different talents to the leadership team, but if you are an IC patient as well as a support group leader, it is always nice to have someone who can take over the meetings when you don’t feel good.

You can think your volunteer role is that of “manager” – that way, delegating responsibilities to others will be easier and will reduce your chance of burnout. Keep in mind that you are unable to provide a cure for people with IC who contact you in your role as support group leader. You are not expected to fix people’s problems. Rather, you encourage them to help themselves and provide the outlet for them to receive the necessary information to be able to do so. Do not take on the weight of the world.

Time on the phone and email can be a drain on your personal space, so you should seek out others from the group to field telephone calls and emails on your behalf.

Keeping in mind that a support group leader is considered by attendees to be someone “in the know,” you should be as educated as you can be about treatment options and self-help tools. The best place to get reliable information is on the ICA website, ICA Update, and by signing up for the ICA eNews.

Revised Monday, August 31st, 2015