We got together again last night with our local group of families affected by ME/CFS (you can read about how our group got started here ). This is mostly families who have one or more kids/teen/young adults with ME/CFS and/or related illnesses, though several local adults with CFS have started to join us as well. As always when we get together, we had a wonderful time! I know, a party with a bunch of sick people probably doesn't sound all that thrilling, but it is actually a lot of fun!
This group of people have become close friends of ours; they are people I think I would be friends with even if we didn't have CFS in common, though it was CFS that brought us all together. They are all warm, kind, intelligent, and caring: all in all, a very welcoming and supportive group. A new local family joined us last night, and they fit right in and felt like old friends by the end of the evening.
My family doctor said she has two other pediatric CFS patients, and she has been trying to convince their parents to call me so they can participate in our local group, too, but so far, I haven't heard from either of them. Last night, we were all trying to figure out why these families seem reluctant to meet others in the same situation, and we wondered if maybe they think that getting together with other people with sick kids might be depressing; perhaps they think these gatherings are like group therapy, where the kids sit around and talk about how sick they are.
The funny thing is that the truth is completely the opposite of that! Our family gatherings are social - for some of these kids, the only social events they are able to manage in their isolated lives. The kids rarely talk about their illnesses, but that's the point: they don't have to. When they are with other kids with ME/CFS, they know that they are instantly understood - no embarrassing explanations or excuses needed. They can put their feet up while they play cards or lie on the ground in the middle of a Frisbee game, and everyone else will understand.
So, when the new teen showed up last night, she walked into the family room and was instantly accepted by the other kids and brought into the game they were playing. The kids talk and laugh and basically act like normal teenagers, which is something that some of them rarely get to experience. So, in a way, it really is group therapy for them, just not in the way you might think (and shhh! don't tell them that - they think it's just fun!)
As for the adults, we do talk a lot about ME/CFS, but it's a comforting, supportive kind of talk. We don't have to worry about making another parent feel uncomfortable talking about our sick kid, like we would in a normal social setting. We are all dealing with the same issues. So, we trade school horror stories and treatment advice and doctor recommendations, knowing that everyone else in the room completely understands.
Most of the parents are healthy, but they all understand what it's like to live with ME/CFS. So, for me, it's a much easier social setting than being at a regular party with "normals." On the rare occasions that I manage a normal social event, I feel so self-conscious and different. Usually, everyone else at a party is standing, while I am sitting in a corner somewhere, staring into other people's belly buttons (or worse!). Everyone else is drinking while I sip at my ice water; and I longingly peruse the buffet table, unable to find anything but the raw veggies that I can safely eat because of food intolerances. But with this group of people, I feel completely comfortable. They know I can't stand for long, so we all sit. People bring a dish or two to pass and set them on the table saying, "Now this one is gluten and dairy free, but that one is just dairy free." It's a very comfortable and comforting social event.
If you have the opportunity to meet others with ME/CFS or related illnesses in your own local area, I highly recommend it. These friendships are just so enriching and easy. I found all of these people in different ways, so there are many options for finding others locally. Here are some ideas
Give your local doctor(s) your contact information, and ask them to pass it along to anyone else they see who has ME/CFS (if you want to proceed more carefully, just give out your e-mail address only).
If it is your child who is sick, do the same with school personnel - give your contact info to the guidance counselor or other 504/IEP coordinator and ask him or her to share it with other parents in similar situations.
Ask your friends and family to let you know if they ever meet someone with ME/CFS. I met one of our local group of Moms when she broke down into tears at a vet appointment because her daughter was so sick. She confessed to her vet - who happens to be one of my closest friends - why she was crying, and my friend suggested she call me.
If you are a member of any Facebook groups or discussion forums related to ME/CFS, post a question asking if anyone else lives in your region. We found several of our local families that way.
Check local newspapers and library bulletin boards for notices of ME/CFS support group meetings held locally. Even if you aren't looking for a formal support group meeting, you may meet someone there who you would like to get to know better.
Check with the CFIDS Association - they keep a list of resources for each state which you automatically receive when you become a member. Several states (NJ, WI, CT, MA for instance) also have active CFS associations with similar resources. Search for your state name and ME/CFS in a search engine and see what comes up.
Believe me, you won't regret making these connections. These friendships have enriched our lives - and provided much-needed support to us. And along the way, we've met some wonderful, amazing people.