Support groups have come a long way from church-basement meetings. In fact, these groups can be a great way to access the latest treatment options for a specific medical condition…and some can even change the course of your disease. What today’s support groups can offer you…
• Online options. Although many support groups still meet in-person, numerous groups now take place online, either through national organizations such as the Alzheimer’s Association and American Cancer Society or on social-media sites such as Twitter or Facebook, where a niche topic might be covered.
Some of these groups are scheduled at a particular time…with other groups, people can join in the conversation at their convenience.
Some examples of online groups that may be helpful: The groups on Inspire.com and the online quit-smoking group from the American Lung Association. Also, every Monday evening at 9 pm EST, a breast cancer group called @BCSM meets on Twitter, where experts answer questions and provide support through real-time chats.
• A way to stay up-to-date on the latest treatment alternatives and research. New treatments and research are often discussed in support groups. Participants talk about their firsthand experiences of what seems to be working and what’s not working for them. (Note: See below for a caveat on following medical advice heard in a group.)
Your doctor or other health-care provider will probably have good advice on locating a local or online group for your particular issue. Most hospital websites also have a calendar of support groups, listing meeting places and moderators.
Twitter is also an excellent source for finding online support groups.
If you’re interested in finding out more about your disease or condition, you should at the very least monitor online support groups (by reading through threads of conversation) to learn what’s going on with others who have the same condition as you. Once you have gathered information from a support group and done your own research, you can go to your doctor with informed questions.
Some support groups have even been instrumental in starting new research studies and have influenced standards of care for particular diseases.
• Emotional support. It’s easy to underestimate the support that these groups offer. Illness and radical life changes are often isolating, and a support group is a place where you can vent your frustrations and share your victories with others who understand exactly what you’re going through because they are going through it as well.
In a study published in Journal of the American Geriatrics Society, patients who attended a six-session diabetes-education program and 18 meetings of a self-help group had less stress and depression and better blood sugar control than those who did not participate in these programs.
After you have identified a group that addresses your need, plan to visit it two or three times before deciding if it’s right for you. During the first few visits, just listen (or read, in the case of online groups) and observe to see if the tone of the group and topics discussed appeal to you. If the group is online, you can scroll through past discussion threads to get a good sense of the group’s dynamic.
You should also assess the group leader if there is one. A good moderator doesn’t have to have a particular degree, but he/she should have been diagnosed and treated for the same disease (or a similar disease) as those in the group. The moderator shouldn’t dominate the conversation or focus on his agenda, but instead set the stage for solid, informative discussions. He should also be able to effectively handle members who try to monopolize the discussion. And you need to feel comfortable enough with the leader to reach out to him if something about the group bothers you.
• Medical advice heard in a group should be carefully vetted by your doctor. It’s easy to get carried away by another member’s enthusiasm for a particular treatment, but what works for one person may not be right for you. And if you’re online, never assume that someone is a medical professional just because he says so. Always check with your doctor before trying anything new to avoid harm.
• Remain anonymous online to keep your health information private. To protect your privacy, set up an e-mail address that you use only for health-related research and online support groups, and don’t use your real name or location.
Also, read the terms of use on the site so that you understand how your data may be shared. The risks of revealing too much about yourself and your condition can range from getting targeted by marketers to being stalked.
Important: Be sure to check the “About” section on websites and/or any fine print to determine who sponsors a support group you’re thinking of trying. If the group is underwritten by a pharmaceutical or medical-device company, the group may be no more than a marketing vehicle for the company’s drugs or therapies.
