Prior to the meeting, I had done various things to create awareness about our new group.
I hung fliers in various places (the library distributed it to every library in the county and even hung them up for me!), notified the nearest city's major newspaper to have my group added (for free since we are a nonprofit group) to their health calendar, distributed brochures to my doctors' offices, & called women whose contact information I had gotten from The Endometriosis Association (which I was able to obtain by applying to be an Endometriosis Association support group leader, getting approved as one, and agreeing to keep women's contact information completely confidential.
When I called the women on the Endometriosis Association list, I received a warm welcome. I told them about the new group and asked them if they'd like to be added to my email mailing list. Most said yes.
I used email (with a distribution list to save time and send one email to the entire email mailing list). I used email to send meeting times, location, and directions to our meeting place.
Once I had made calls to everyone on the list, I had about 23 women signed up for the notification emails. Today my email mailing list has grown to 42 women. Many support group members don't generally make it to meetings but like to get the emails to stay in the loop about endo. Occasionally I send out info on endometriosis research and links to endometriosis sites.
In the last 7 years our group has been busy:
+ Our support group was featured on the local news
+ We (some group members) emailed a major newspaper that had written false and misleading comments about fibromyalgia
+ We shared information regarding hormone replacement therapy
+ We shared information about local physicians
+ We learned of a national news story regarding disability claims
+ We shared information about other local support groups that serve the needs of our endometriosis support group members (an infertility group, an interstitial cystitis group, and a fibromyalgia group are all available in our area)
+ I emailed a link of a radio program regarding interstitial cystitis for those group members who were interested (an excellent radio program!)
+ I passed along online newsletter from the Interstitial Cystitis Association
+ We shared information about making medical exams easier (especially pelvic exams)
+ We shared information about physical therapy for pelvic pain... (Contact The National Vulvodynia Association (http://www.nva.org/) to see if your area has this type of specially trained physical therapist
+ We learned of a website about adhesions
+ We shared information about medical research studies being conducted in our community (for endometriosis and fibromyalgia)
+ We shared information about the dangers of some health & beauty products (for everyone!) - but especially women with endo (see the following website for more information: http://www.cosmeticsdatabase.com/splash.php?URI=%2Findex.php)
+ We learned about a "last resort" surgery called presacral neurectomy from a group member who had the surgery
+ We merged 2 support groups
+ We got local TV stations to agree to air endo public service announcements
+ We generated awareness about endometriosis in our community
+ Occasionally group members even brought snacks to meetings!
+ We held a fundraiser and gave 100% of the proceeds to The Endometriosis Association (with the money we raised earmarked specifically for endo research)
+ We learned that many group members have vulvar vestibulitis or vulvodynia and that many group members get terrible migraines
+ We shared information about breast cancer (melanoma, ovarian cancer, and breast cancer are more common in endometriosis patients than in women who do not have endo)
+ Some group members signed a petition objecting to "drive through mastectomies"
+ We learned of 2 websites... one about alternatives to hysterectomy and the other to support women who had gotten a hysterectomy
+ We had guest speakers speak on nutrition, relaxation techniques, Chi Nei Tsang, acupuncture, endometriosis (a gynecologist gave a fantastic presentation!), environmental concerns specific to endometriosis patients, etc.
+ A group member shared a recipe book that might be helpful for endometriosis patients
+ We organized an email campaign to FDA - to request labeling and eventual phase out of PVC and DEHP from medical devices
+ Group members supported each other during difficult times (such as surgeries)
+ We shared info with each other regarding infertility HMO coverage
+ We donated a copy of The Endometriosis Sourcebook to a public library
+ We connected group members who had similar symptoms to one another so that they could support each other and exchange information
+ We learned of a study showing that chronic pain can alter the brain
+ We discussed co-existing illnesses extensively since many support group members have other illnesses besides endometriosis (ones related to endo)!
+ We shared information regarding a drug recall that impacted some of our group members
+ We shared information on books that group members found helpful
+ We supported patients who experienced miscarriage and infertility
+ We discussed prescription treatments, surgical options, and alternative medicine modalities
+ We created a website with information pertaining to the local support group (directions to the meeting location, a meeting calendar, links to relevant websites, etc.)
+ We shared links to news stories we'd seen on TV or in print
+ Patients have gotten connected with each other between meetings to discuss one patient's vestibulectomy (while another patient was trying to decide whether to have this surgery)
+ We LISTENED to each other!
***UPDATE***
RELATED (PREVIOUS) POSTS LINKS TO THIS ARTICLE INCLUDE:
Monday, July 28, 2008 Endo Blog: What Is “Self-Help”?? What Are The Health Benefits Of Volunteering? Why Join/Start A Support Group??
Monday, August 4, 2008 Endometriosis Blog: Self-Help Groups, Support Groups, and Volunteering Follow-up
Tuesday, August 5, 2008 Endometriosis Blog: My Personal History As An Endometriosis Patient
Thursday, August 7, 2008 Endometriosis Blog: How Finding The Endometriosis Association & Participating In Endometriosis Support Groups Helped Me & Made Me A Volunteer!!
I'll end this post with a quote regarding support & self-help groups:
"Mutual support groups, involving little or no cost to participants, have a powerful effect on mental and physical health... The psychological and physical health importance of this diffuse community is striking... The self-help movement, both in face-to-face and virtual arenas, has tremendous therapeutic potential."
From American Psychologist feature article "Who Talks?: The Social Psychology of Illness Support Groups" by K. P. Davison, J. W. Pennebaker, & S.S. Dickerson, (55) 2, pp. 205-217, 2000.
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
