Peer Support Groups
Sometimes the only way to get adequate support for living with migraines is from fellow migraineurs. Friends and family mean well, and coworkers can empathize to the best of their abilities. However, there are times when you just need to talk to someone who has stood in your shoes, and who can share insights, compassion, heartaches, and humor.
Migraines take their toll on the migraineur, to be sure, but they can also be draining for your support network. Constant reliance on family members for emergency child care, for example, may use up their goodwill when it comes to “optional” outings such as an evening work meeting or a movie with a friend. If a spouse is spending an inordinate amount of time cleaning the house or driving to doctor's appointments, she will eventually start to burn out. Protect the ones you love by letting them know how much you value their support, but also develop a network of outside help for chores and child care (paid or otherwise), and seek out and take advantage of peer support.
A convenient way of receiving online support for migraines is from e-mail lists, sometimes called listservs. These lists work by subscription; generally someone has to be accepted to the list by a moderator, and that approval allows them to send and receive messages. Because the audience is so diverse, e-mail list queries usually get responses back within a few hours. Also, most lists allow subscribers to receive either individual messages, or a once-a-day digest with the day's messages compiled into a single e-mail.
If you don't enjoy web browsing and don't need an immediate response, e-mail lists are a terrific choice. Lists exist for general migraine sufferers, and there are others specifically for triggers, treatments, surgeries, and other aspects of migraine management. On the other hand, try not to let migraine or fear of migraine take over your life. Remember, when you are feeling well, the focus needs to be on wellness and enjoying life.
New e-mail lists are always being created, so there is good variety. The only things required to take advantage of e-mail lists are a computer with Internet access, and an e-mail program. If you don't find a list that meets your needs, it is easy to start your own. See Appendix A in the back of this book for more online resources.
One of the fastest ways to get quick feedback from fellow migraine sufferers is by reading and posting in an online forum. Pick the means that works best for you: chat rooms offer immediate feedback from whoever else happens to be online, whereas bulletin boards let you look through all the questions and answers that others have posted recently. If you are fast-paced and want to “talk” (or type) to another person in real time, go with a chat. If you prefer to peruse a series of questions and read all the answers that others have provided, boards may be the best choice.
What are some of the best online boards for asking migraine questions?
My Migraine Connection:
Worldwide Migraine Meetup:
Revolution Health:
There is a wide range of online options when it comes to technical migraine support. Many medical Web sites offer “Ask a Physician” pages, where you can e-mail questions and receive answers back in a short amount of time. Most of these sites retain your anonymity while providing you with another point of view to supplement that of your regular team of physicians. Providing as much information as possible will allow the doctors to better assess your situation and give you a more thorough answer to your query.
Remember, though, that asking questions online is no substitute for speaking to your own physician. Online question-and-answer sessions are a terrific way to validate new treatments or get suggestions for your existing treatment plan, but never rely on them exclusively.
Appendix A has a list of Internet resources for online migraine support.
For those who do not spend a lot of time online, or are uncomfortable seeking support from virtual strangers, consider one of the multitudes of “real world” support groups. The National Migraine Association and the National Headache Foundation both maintain a list of support groups organized by state. Similarly, the American Council for Headache Education is a good starting point to finding a group in your city.
Another good place to look for support groups is at a local hospital or medical center. All groups need some place to meet, and many of them use hospital meeting rooms after hours. Talk to your physician or call the hospital's community outreach department to inquire about migraine support groups in your area.
