You may have heard it said that a church is defined simply as a place where two or more gather. The same can be said of a support group. If you have ever felt alone in your personal fight with epilepsy, a support group can be a terrific way to share concerns, frustrations or solid solutions to daily issues. If no support group exists near you, a few steps can get you started in creating one, even if it starts quite small.
First you should know that if you’re feeling alone, you’re actually in good company. One in 26 Americans develops epilepsy at some point in their lifetime, but lack of public awareness of the disease means that many who suffer deal with their issues alone. So consider these six steps as concrete ways to take charge of your own needs while offering a gift to your community of epilepsy sufferers.
Steps for starting a support group:
1. Purpose – determine the goal or mission of the group. This can change and expand, but it’s important for people signing on to know, for example, if this is a discussion group of peers or a group sponsored by a local health agency, which might involve professionals. Not only does purpose of the group make expectations clearer for people joining you, but it also impacts choice of regular meeting place or amount of advance planning necessary for regular programs. Your purpose also defines potential people joining you, depending on whether it’s a group for patients only or for patents of children with epilepsy, for instance. Purpose can also impact frequency of meetings – bi-weekly might work for your informal group but monthly may be better if you’re planning formal programs. In general, bi-weekly or monthly meeting cycles offer a good balance because if the group meets too frequently or not often enough, fewer people will show up and commitment to a group can fizzle.
2. People – although the group can start small, it’s important to have at least a couple of others share your passion to tend to details and keep things going. If you need help identifying people, mention your plans to your doctor, who might put others in touch with you, or contact EFM to see if any volunteers in your local area might have similar interests. Be clear in sharing the purpose of the group with potential partners or participants. You might use response to your initial outreach to gauge interest sufficient to moving forward in establishing a support group.
3. Place – private homes are an option for small informal meetings of people who know each other well, but it’s often best to consider public space in a central location for many reasons. A library or other facility with community meeting rooms, medical center conference rooms, churches and even coffee shops all are possibilities, depending on the time and day you plan to meet. If the meeting is in the same place every time, versus rotating locations, that’s one question people won’t forget the answer to, but your group may want to try out a few choices when you first form before deciding the ideal location.
4. Program – whether an informal discussion group or one with regular professional involvement, it’s a good idea to consider a specific theme or focus for each meeting. This keeps meeting discussion fresh and focused plus attracts the interest of potential members who see what real issues the group addresses. Start on time, pass around a sign-in sheet so contact info stays accurate, and allow for open time at the end of the meeting for casual conversation between members. If you’re planning formal programs, the medical community offers great resources but be creative in your quest for topics. Educators, public safety officials, nutritionists, and community leaders who have successfully navigated the challenges of epilepsy are just a few of the speakers who can offer resources to your group. Contact EFM if you’re running short on ideas.
5. Publicity – with so many free options for making new members aware of your group, there’s no reason to rely only on word of mouth (assuming you are meeting in a public place and you are willing to open the group to newcomers you may not know). Among your publicity choices are EFM website, Facebook discussion groups, social media sites such as Meetup, local newspaper, radio or cable TV public service announcements, health center bulletin boards and newsletter event listings, and fliers in doctors’ offices. Keep the information eye- or ear-catching with just the most important details. Set up an email address devoted specifically to the group as opposed to using your personal account publicly. An email distribution list of active and potential participants allows you the chance to send specific meeting details, which can then be forwarded to other potential members.
6. Progress – taking notes can be important for capturing ideas for future meeting topics, following up on open items from the meeting, making suggested changes to place, day, time or frequency of meetings, and simply tracking the growth of your group in terms of size and the variety of resources offered. The purpose of the group may also expand as you progress. If you’re new to starting groups or running meetings or delegating responsibilities, this is an excellent way to enjoy the satisfaction of seeing your personal progress as well.
What do you think? Go to http://www.facebook.com/#!/epilepsyms and share ways your burden has been made easier through the support of others. If your support group offers unique programs or features, suggest those to other groups.
How can you take action? Before taking step 1 or 2 to form your own group, seriously consider the pros and cons. People will be counting on you – a fantastic opportunity to make a difference but also a big responsibility. Check out http://haruteq.com/howtosupport.htm for firsthand experience of a successful group starter, from beginning to its end five years later. Also check http://epilepsy-ms.org/support-groups/ to see what support groups already exist in Mississippi. Know of one not listed? Pass along the contact information so others can connect with existing groups!