Pauline has been on the phone for an hour this morning. She moderates the diabetes support group on the Philmore voicemail system. Members have been leaving each other messages for almost four years, and Pauline makes sure information is current and that questions are answered in a friendly and factual way. Requests for special recipes, tips for lowering those high glucose readings, and suggestions from diligent shoppers who carefully sample the new sugar-free products or adaptive equipment find their way into the conversations of this group.
When hurricanes devastated her Louisiana home in 2005, Pauline kept the group going on her cell phone even when she had to move. Group members came to her aid when her husband’s business was closed, her home was devastated, and she almost ran out of insulin. The group was quick to show support when member Faith’s newborn son was diagnosed with diabetes. A dialysis patient herself, Faith has answered questions for many other frightened members. She has already traveled many of the paths they are facing now. And Penny inspires newly diagnosed members when she recounts the challenges of her sudden vision loss. She had to struggle to maintain her federal employment while coworkers, supervisors, and friends saw her in a different, and not positive, way. She had to prove her abilities, and to do that, she had to stay in control of her diabetes. Thirty years later, and still in control, she offers her years of expertise to others.
People like Penny, Faith, and Paula are available in hometown support groups and on the internet through chat lists hosted by many organizations. Telephone and email contacts simplify mobility issues for people who have trouble with travel arrangements. Chat rooms also offer daily contact. Updates on a member’s frightening lows and speculations on what his endocrinologist will want him to do about it become of urgent interest. Members stay connected wondering if Amy will still be diabetic when her baby is born, or how long it will take Tom to master the use of his new talking glucose meter. Most systems use careful record-keeping to protect their subscribers and participants from spam and advertising. Yahoo and Google groups for diabetics include such topics as nutritional information, low-carb and low-fat recipes, pump use, dialysis, and gestational diabetes. There is at least one online group for diabetics with visual impairment.
Networking with others who share the same concerns can provide many resources and personal contacts. You may need to be selective or be overwhelmed. The choices you make about contacts and participation will depend on your needs and interests, and the time you have to give to help others. Sharing your enthusiasm and group contacts with your family members may make them feel more comfortable with your growing confidence about managing diabetes. Networking works. Someone in your group may have an idea that was not presented by your doctor’s office or your medical team.
Ask your primary care physician or healthcare team for a referral to local support groups. Members of your local chapter of the National Federation of the Blind may be able to direct you to groups in which other visually impaired persons have been made welcome. The Diabetes Action Network, the NFB affiliate which produces this magazine, provides information and contacts at national conventions annually and may offer seminars using new equipment or hosted by professionals dealing with diabetes research or treatment. The diabetes support group at www.healthcentral.com provides links to national organizations which focus on different aspects of diabetes. The newly diagnosed, the sensory or neurologically impaired, obesity and struggling with weight gain are just a few of the issues that are addressed. Information about local groups that you might want to join or visit can be provided by national organizations.
Local groups usually offer face-to-face meetings once a month. Family participation is often encouraged, literature is available, and question-and-answer sessions with professionals are provided, along with mentoring by group members who have experienced glucose control issues, difficulty working with their healthcare team, organ failure or distress, and lack of family understanding. Within the security and confidentiality of these groups, you will learn to share your experiences with people who have been there and done that before you. You, in turn, help them cope with problems you have solved. Families meeting families sometimes ease the burden for the patient.
Improving self-care skills is the healthcare goal of a group of young women between 18 and 30 in the Boston area. This group is sponsored by the Joslin Diabetes Center. In a rural community in the south, a group for seniors with Type 2 diabetes focuses on nutritional improvements and exercise skills to avoid the complications of long-term diabetes. A community group in Grand Rapids, Michigan, recruits new members and expands the horizons of regular members by posting the topics and speakers to for their meetings several months in advance. Recent meetings included: Working the Swing Shift; Diabetes and Your Wallet; Move! Doing Exercise; and Diabetes is Driving Me Crazy.
Support groups may lead to permanent friendships. Empathy, troubleshooting, and straight talk are provided as each is needed by participants. This is a "win-win" opportunity. Test the water. See if you’re comfortable talking to others who have already been where you are now. You will learn to trust your own ability to solve problems and to make decisions regarding your care. Your healthcare team will feel more confident knowing you have resources other than those from their office. Your family will absorb your growing confidence in your ability to take charge of diabetes in your life. Reach out. Remember, you don’t have to do this alone.
Readers Note: In this article, some names and locations have been changed to protect privacy.
About the Author
Marilyn Brandt Smith holds degrees in English, education, and counseling psychology and has worked in rehabilitation in several states. She has written for, and edited, small-circulation magazines and is the primary editor of a disability anthology, “Behind Our Eyes,” published in 2007. Marilyn was the first blind Peace Corps volunteer. She lives with her family in Kentucky. E-mail her at: [email protected]