Note: Take all suicidal threats and innuendos seriously. The National Suicide Prevention Lifeline at 1-800-273-TALK (8255) is a free, 24-hour hotline available to anyone in suicidal crisis or emotional distress. If you are concerned that a caller or member of your support group is feeling desperate, alone or hopeless, pass on this number or call on their behalf. Your call will be routed to the crisis center nearest to you. Keep the caller on the phone until you are certain that help has arrived. Be sure to stay calm even if they are not. Remember that they are the one in crisis, you are not.

Providing phone support to patients and their family members can be a very rewarding part of a support group leader’s job. The following guidelines were developed with input from veteran support group leaders Rhonda Garrett, Molly Glidden, Barb Zarnikow, and Teresa McCoy:

  • Consider establishing regular hours when you will receive calls. This information can be put on your business cards or other contact information, and can be as simple as saying you will take calls Monday through Friday from 6 to 8 pm. It can also be worth the investment to use voice mail and caller ID. If you don’t recognize a number coming in after hours, allow the caller to leave a message so that you can call them back when it is most convenient for you.
  • Try to listen more than you talk. A call from an IC patient may be a simple inquiry about meetings or it could be a call from a patient in crisis. The most important thing is to offer assurance to the caller that they are not alone. Calling you is often the first contact that they have made with another IC patient, thus breaking the isolation that they may be feeling.
  • You cannot provide medical advice and should state so right up front. Instead, be prepared to offer resources such as IC physician referrals, resources to learn more about treatments, basic diet modification, and sites offering resources such as the Interstitial Cystitis Association and online support networks. Encourage callers to talk to their medical care provider to learn more.
  • Take down as much contact information that the patient will give. Ask if you may include them on your mailing list which can include information about upcoming meetings and research updates about IC.
  • You cannot solve problems but you can offer HOPE. Patients in crises may not always think clearly. Help them determine first and second steps to take. Inquire about immediate needs and help brainstorm options not already verbalized. Ask the caller to make a commitment to one small change.
  • Assure the caller that resources are available. Some patients may be reluctant to attend face-to-face support groups, but gently remind them of the importance of talking to others who have experienced what he or she is going through.
  • You may occasionally have contact with a patient who wants to talk, but doesn’t seem to want to help themselves or they seem to repeat their story over and over. Be patient. Most patients and their families go through the various stages of grief after a diagnosis of a chronic illness. At any one time, the person may be in shock or denial, and even feel guilty, confused, depressed, or angry. Remind them that they will come to a form of acceptance someday that will include not only a pocketful of coping strategies but also a new version of what will be “normal” for them in their lives.
  • Ask about personal resources such as family, friends, and clergy. Often, people begin to establish a new support system with people they meet at support group meetings. Encourage them to be honest about their needs and to seek help from a professional counselor if necessary.
  • You may get calls from parents and spouses looking for more information about IC and the support group. They are often just as upset as someone who is newly diagnosed. They feel badly that they are unable to help their loved one. Assure them that what the patient is feeling is real and that being there to support them is a great help. Parents, friends, and spouses should be encouraged to accompany patients to your meetings.
  • If possible, follow up with the caller at a later time. This shows concern and continuity for the patient that is calling. You could follow up by phone, email, written note, or card.
  • Get help. 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.


Revised Monday, August 31st, 2015