Some brief history: this group began with some "mom's lunches" back in 2010 with five of us moms whose kid(s) had ME/CFS and an assortment of other diagnoses. That led to a potluck dinner where our families met ... and our group was born! Since then, we have to grown to about 40 families in our region (DE, NJ, MD, and PA), with both sick adults and sick kids and a variety of related medical conditions, like ME/CFS, EDS, fibro, Lyme, and POTS.
Last night, we had 13 people here. Some were old friends (including two from that original group), but we also had three people who were completely new to our group: one who's had ME/CFS for over 20 years, one who's not only living with ME/CFS but also researching genetics in grad school to help find answers for us, and another who has no solid diagnosis yet but whose multiple symptoms were familiar to all of us. Old friends and new ones caught up, got to know each other, and traded information. With plenty of seats, lots of options for those with food intolerances, and a heaping scoop of empathy all around, everyone talked for hours. Information on local doctors, effective treatments, school issues, and more flew back and forth, with lots of note-taking and promises to text or e-mail details.
Yes, in case you're wondering, it was exhausting ... but well worth it! Even my husband, who is the healthy one here, is tired this morning, but it means so much to us to be able to help others--and to make such wonderful new friends, too. We keep learning new things, as well. Being around others who so completely understand your crazy, unusual life is so comforting and affirming. Toward the end of the evening, one guy said he needed to leave, and a bunch of us said, "Oh, yeah - we can see that! You're definitely going downhill. Take care of yourself." He said it was such a strange experience, for everyone else at a gathering to "get it" and understand instead of pressuring him to stay or saying he'd be fine.
So, once again, I want to encourage all of you--wherever you are-- to find your people! Whether you can interact in person like our group last night (and again, this was a rare outing and social interaction for many) or only online, it is SO rewarding and supportive to "meet" others like you. And, it might just help you to improve your physical condition, too--much of our talk last night was telling each other about the treatments that have helped the most. Our original group of five families included seven kids and teens who were all moderately to severely affected by ME/CFS; thanks in large part to the advice and support from this group, four of those kids are now young adults either in college or graduated. Many others have come and gone as they've improved and been able to live their lives again. The benefits of community are both physical and emotional.
How do you find your people? Check out this article I wrote for ProHealth, Birds of a Feather: The Joys of Community, that details some ways to find others in your local area, for in-person or online interactions.
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