We had another successful get-together with our local chronic illness support group last night when we hosted a potluck dinner here at our house, with about 20 people. Some who attended were old friends, of the original five families that I gathered together over eight years ago, and some were new group members, struggling with their own or their children's illnesses or even still seeking a diagnosis. We talked for hours, shared our challenges and helpful advice with each other, and just laughed and enjoyed each other's company, too.
The adults and parents traded a lot of stories, experiences, and information, and the young people bonded. We had a new 21-year old young man here with his parents whose ME/CFS has recently forced him to greatly reduce his college work. He and my own 24-year old son hung out together in our basement. My son says they talked a bit about their illnesses, especially the isolation and challenges of being chronically ill with healthy friends, but they also just chatted about favorite TV shows, video games, and Pokemon! It can be incredible - sometime even life-changing - just to be able to relax with a friend who totally "gets it."
To read more about our own local group, Birds of a Feather describes how the group started and how I found those original other four families. That first local meet-up was just us moms (all with sick kids) at a local restaurant for lunch. That was followed by a second "mom's lunch" at the mall with another new family added, only this time some of our teens came along to meet each other. That was quickly followed by a family picnic, where all the kids and some husbands/fathers joined us, as well as two more families. That was a resounding success, and by then, we all felt like old friends (in addition to helping each other with treatments, doctors, school accommodations, and more). If you're still not convinced of the benefits of meeting up with others who are similarly sick, check out Party for Chronically Ill Kids, which always makes me tear up, thinking about how our kids bonded and what big a difference it made for them to meet others like themselves.
Our local group now includes more than 40 singles and families - some sick adults, like me, and some healthy parents with sick kids/teens/young adults - from five states (we live in Delaware, which is tiny!). Last night's get-together proved once again how powerful it is when patients and their families come together. One mom hugged me as she left and thanked me for hosting, saying it had been a life-changing evening for her - which is just what we all said those first times we got together!
Have I finally convinced you of the benefits of connecting with others locally? This article I wrote for ProHealth, Birds of a Feather: The Joys of Community, includes tips on how to find others nearby with the same or similar illnesses.
Now, go find your people!
I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
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