If you’re looking for encouraging words and education, but the very words “support group” bring forth images of half-naked men pounding bongos in the forest, don’t despair. With over 800 groups in the United States for people with diabetes and a whole host of computer-based discussion groups springing up on the internet every day, there’s really something for everyone.
Sure, support groups aren’t for everybody, but there’s no shortage of people who say the group experience has changed their lives. “It was a godsend,” said Christy Hoss of her support group in Los Angeles. “For me personally, the support group just kept me going-it helped me keep informed,” she said. When Hoss was diagnosed with diabetes over six years ago she felt alone and unsure about how to handle a disease that requires constant attention. “I hate shots and I always have,” Hoss said. “When I was diagnosed, I thought, if I had to get a disease, why one with so many shots?”
It was the support group that put her in touch with other people with diabetes. It was “a way to establish comraderie,” she said. Members exchanged phone numbers, so words of advice or encouragement were never more than a phone call away between meetings.
The first time he went to a support group meeting Steve Stokes said he was reluctant, thinking it would be “a disguised sales pitch for (hospital) services and diabetes paraphernalia.” But he was pleasantly surprised, saying he had found “a place I could go and be with people who were all too aware of how devastating diabetes can be…So different from the outside world where well-meaning co-workers and family say things like, ‘insulin injections cure diabetes, so don’t worry.'”
Bettie Norgord, founder of the Dynamic Sharpshooters, Arizona’s largest support group for people with diabetes, said she walked out of the first meeting she went to. The topic was kidney disease, and “it scared the heck out of me.” But she went back. Thirteen years later, after taking over the group, the original crew of seven or eight members has grown to nearly 400 under Norgord’s leadership. About 45, she said, are regulars at the two-hour meetings held every other month at a local hospital. The rest are avid readers of the Dynamic Sharpshooter bulletin.
Most groups have a strict no-medical-advice-given policy. But that doesn’t mean members aren’t mindful of the health care they receive. At one meeting, Hoss said she met a woman who had just been diagnosed with type II diabetes. “Her doctor sent her away and just told her to watch what she ate.” The woman continued to feel unwell, not quite right, so Hoss tested her blood sugar right there at the meeting. The reading was an alarming 500 mg/dl. After visiting another physician, the woman discovered she’d been misdiagnosed-it was type I diabetes that she had, not type II. “This has happened several times,” Hoss said, stressing that she encourages people to seek the best care available. “Sometimes you have to push.”
Finding a good support group won’t solve everything. This, say founders, is a misguided, but common notion. “Don’t expect easy answers,” Hoss said. People want the speakers to have all the answers, but “nobody has all the answers to diabetes…problems can’t be solved overnight,” she said.
Different groups have different formats. Some groups rely on lectures to provide a focus, others forego speakers in favor of more intimate, emotional support sessions. Evelyn Narad said her group, the Sweet Peas, grew from four friends stuffing envelopes for a local diabetes society to 28 women with diabetes who talk diet, recipes and exercise. But it’s the emotional support that people really appreciate. “The strength of this group is in the sharing of problems… We inspire each other,” Narad said.
Sweet Pea meetings often focus on diabetes and diet, Narad explained. Controlling weight and changing long-held eating habits is not easy. Doing it alone is even tougher-that’s where the group comes in. The Sweet Peas help keep people on track. “Thirteen of us have lost a combined 500 pounds,” said Narad, who has dropped nearly 100 pounds in one year following her low-carbohydrate diet.
Sounds great, you say, but there’s nothing in your neck of the woods? Then go ahead, start your own group. Hoss did. When she moved from Los Angeles to Santa Rosa, California and found herself without a group nearby, she set out to fill the void. Starting the Diabetic Fellowship “was a lot of hard work, but very rewarding,” she said, “I don’t think I’d be dealing with my diabetes so well without it.”
A Do-it-Yourself Guide
- Corporate sponsors. Marketing is big business for companies in the health care business. Norgord said she’s had no trouble finding sponsors willing to pay $75.00 to cover the cost of meetings, refreshments, the newsletter, etc. In exchange for the fee, sponsors set up a display table at the meeting and receive an ad in the newsletter. The idea is so popular that Dynamic Sharpshooter meetings have corporate sponsors booked a year in advance, Norgord said. In fact, there’s even a waiting list.
- Free location. A local hospital provides a room for Dynamic Sharpshooter meetings. Hoss’ Diabetic Fellowship relies on a neighborhood church for free space. “People spend enough money, they shouldn’t have to pay for support groups and education,” Norgord said. Meetings are always free but donations are accepted.
- Interesting speakers. You don’t have to be a talker to attend or organize a support group-speakers often take the pressure off the facilitator. Diet, insulins, feet, eyes-you name it, the topic possibilities are endless, said Norgord, who has had diabetes for 23 years.
- Door prizes. They’re a big hit, Norgord said. “Everyone goes home with a raffle prize,” she said. Lotions, syringes, glucose tablets are supplied by companies who are generous about supplying free samples. Refreshments are also popular and provide a forum for informal socializing after meetings.
- Information exchange. Some people learn more from reading than they do from chatting, especially if they’re shy. That’s why Norgord encourages members to bring old diabetes magazines, books or newsletters to each Dynamic Sharpshooter meeting so others can take home reading material and return it at the next gathering.
- A newsletter. It doesn’t have to be poetic or glossy, but a newsletter is helpful in keeping members together between meetings. It also serves as a reminder for the forgetful.
- Help. If you don’t rely on the members themselves for planning, input and administrative necessities, you run the risk of burn-out. Don’t shy away from delegating once you’ve got the meetings going, say support group founders Hoss and Norgord.
- Getting the word out. Advertise the details of the meeting at diabetes clinics, bulletin boards or even at the corner store. Let physicians and educators know what you’re doing. “People come out of the woodwork when they hear about it,” Hoss said. “When something’s needed in the community, word gets out.”
Expenses are never more than $50 per month for Hoss’ group. The money, raised by putting a basket on the refreshment table, is enough to cover the twice-per-month meetings and the newsletter, which goes out to about 50 people.
Hoss and Norgord find local educators, physicians or psychologists to come and speak for free. Diet is a favorite topic, Norgord said, adding that both type Is and IIs attend their meetings. Speakers talk for the first hour, then there’s time for a question and answer session.
Again, cost is not an obstacle. Hoss said she uses the church copy machines and computers for free in order to get their newsletter out. Mailing costs for the Dynamic Sharpshooter bulletin are paid for by the same hospital that provides the meeting space.
The options for founders-to-be are endless. Diabetes: A Guide to Living Well, written by Gary Arsham, MD, PhD, and Ernest Lowe, offers a lengthy chapter on finding or starting a support group. Passages on how to facilitate, avoiding pitfalls, guidelines for new groups and a list of possible discussion topics can be useful to the new support group organizer.
Groups Aren’t My Thing
You want some peace and quiet after eight hours at the office? Some say they get all the support they need right from the comfort of their own home. “Once I found the diabetes newsgroup on the internet, I stopped going to meetings altogether,” said satisfied internet user and former support group goer Bonnie Clement. “The information I got daily was more up-to-date and more practical for my needs. With today’s fast-paced, too-full life, I believe the internet is providing the support many people need for chronic illness.”
It’s true that the two alternatives are not mutually exclusive. Charlotte Noll, whose six-year-old son Justin was diagnosed with diabetes last year, goes to meetings and subscribes to on-line mailing lists. At meetings “I can talk about problems without little ears hearing and there is comfort and experience there,” she said. The computer mailing lists and newsgroups “are very informative,” Noll added.
You can’t expect to find satisfaction every time you point and click in the world of computers, but there is plenty to be gleaned, if you have the time and patience. One popular web page which bills itself as “the online information source for kids, families and adults with type I diabetes,” offers a veritable sea of choices. Tips on diet, a research section, travel advice and a database of kids, teens and adults who want to exchange mail or e-mail are just a few of the features that make this page so useful. They also have chat rooms for these age groups and for health professionals too. You can access it at: http://www.castleweb.com.
The American Diabetes Association (http://www.diabetes.org) and Eli Lilly (http://www.lilly.com) also offer informative homepages, but this is just a small sampling of what’s available. Look for Diabetes Health’s own home page in the near future. Having a world wide web browser makes searching easier, but if you’re new to the game and have a modem, give America On-line (800-827-6364), Compuserve (800-848-8990) or Prodigy (800-776-3449) a call to find a forum or chat room where you can talk with other people with diabetes.
Snail mail still works, too. You can write the “Making Friends” section of the ADA’s magazine Diabetes Forecast, to find pen-pals all over the country. One wary parent suggests screening kids’ pen-pal letters first, however. “When my daughter was diagnosed with (type I diabetes), I submitted her name to the ADA pen-pal list. Well, after receiving many letters from prisoners…and sales people, I was not exactly happy,” he said. Now he screens for prison return addresses and his daughter continues to swap letters with pen-pals with whom she has more in common.
There are people out there in almost every medium; it’s just a matter of finding them. Support group founders say you won’t be sorry you did. Every Monday Narad still looks forward to sharing her life with the Sweet Peas. Have they ever had a bad meeting? No, she says, “they just get better and better.”
If you would like more information about starting your own support group you can contact:
The Diabetes Society
Atten: Evelyn Narad
2777 Cleveland Avenue, Ste. 103
Santa Rosa, CA 95403
4677 West Earhart Way