In total Wednesday, from 4 - 8 pm, we had 7 sick adults, 3 sick teens/young adults, and 4 healthy parents/siblings/spouses (14 total, including us). Some have been with the group since its beginning seven years ago, others have been added through the years, and two families were new to our group and just meeting everyone for the first time. We have a couple dozen additional families in our local group who weren't able to make it this time. The great thing about getting together with others dealing with the same illnesses and issues is simply that they "get it." Everyone was making sure the ones with ME/CFS and OI were sitting down, we had plenty of salty snacks, foods were labeled for those with dietary restrictions, and you just know that everyone else understands your limits without you having to say a word. When we get together like this, it is about 50% socializing and about 50% helping each other, with tips on local doctors, treatments that help, diagnoses to consider, etc. It's an incredibly warm and supportive environment. ME/CFS and other similar illnesses can be so isolating that finding other people going through exactly what you are going through is an incredible experience - and definitely inspiring.
How We Got Started & Evolved
Just in case you haven't been reading every blog post here for the past 7 years (!), I'll give you a little background on how we got started. Back in 2010, when both of my sons had ME/CFS (and me, too), I kept hearing about other kids in our area who also had it. I found out about these other families through a wide variety of means and talked or met up with some of them, but at one point I thought, I'm meeting each of them, but they haven't met each other! So, I arranged a lunch meeting at a local restaurant, and five moms from the surrounding region (here in tiny Delaware that means some came from PA and some from MD or NJ) came. That first meeting was a mind-blowing experience for all of us, and we decided that our families had to meet, too. You can read all about that first meeting - including how I found these other parents, in my post, Birds of a Feather.
|Adults at our first family gathering|
We followed up that first meeting with a second "Mom's lunch," and some of our kids came along this time to meet each other. This was another huge success, both for the parents and the teens. You can read all about it in my post CFS Mom's Lunch. By then, us moms were good friends, and our kids got along well, so one mom offered to host a backyard barbecue the following month. This was another amazing event, with all the kids present and the dads finally able to meet the other families, too. I wrote about it in Local CFS Picnic a Huge Success! On the way home that night, our own sons were very enthusiastic and asked when we could do it again.
And so, our local group was formed. Seven years later, I now have 36 Party for Chronically Ill Kids, explains how just the opposite is true, and how freeing and fun it is for these kids (and adults!) to hang out together.
people on my local e-mail list, and we get together several times a year for weekday lunches at a restaurant or potluck dinners in someone's home for the whole family. The group is no longer just families with sick kids; plenty of sick adults are now a part of it, too. Our original families are still an active part of the group (though one family moved). Some people never miss a gathering, some come when they can, some have never been to a gathering, and some are housebound and can't come...but they are all on the e-mail list and appreciate being connected with others in the local area even in that limited way - to know they are not alone. And lest you think these gatherings of sick people are boring and depressing, this post,
|Kids & teens at one of our lunches|
As you can probably tell, our local group is not a typical support group, where you meet one Saturday a month in a library or church to sit in a circle and talk about your illness. In fact, where I live, in Delaware, I know of three support groups like that - they all eventually fizzled out and no longer meet. I can't claim any great wisdom in doing this differently - it just sort of happened this way naturally! As you can see, our group is more social, while still providing support and helping each other. We have become good friends over the years, and the new people who came to our house this week also said they felt comfortable and supported by friends in our group, at their very first gathering. We keep the vibe low-key and friendly, but there is a LOT of important information that gets passed along when we get together, too.
You may not know anyone else locally with ME/CFS (or related illnesses like fibro, EDS, and Lyme), but - unfortunately - there are plenty of people in every region of the world just like you. The key is finding them, especially since most of us don't leave home very much. You can find others in a lot of different places, as I did - through your doctors, schools (in the case of sick kids & teens), mutual friends, and even online. This article I wrote for ProHealth, Birds of a Feather - The Joys of Community, provides lots of tips on how to find others, both online and locally.
Having a support network of friends who are dealing with the same challenges that you are is incredibly rewarding, both in terms of friendship and in terms of actionable information that can help to improve your health. These friendships we make - and continue to nurture - have enriched all of our lives.
So, get started and find your people!