There are good reasons why Chronic Fatigue Syndrome and Fibromyalgia are known as Invisible Illnesses. First, there's the fact that most of us look "normal" to people who don't know us. Strangers or casual acquaintances who see us out have no idea how much we're suffering or what a huge effort it's taking for us just to be present. Second, stuck in our houses for most of our lives, we feel isolated and invisible to the world outside.
I was feeling my invisibility acutely yesterday at Craig's soccer game. I'm still very badly crashed, but I dragged myself to the game and was sitting there, wrapped in a blanket and huddled in my beach chair (close to the ground to minimize the effects of OI), aching all over and probably feeling a little sorry for myself. All around me, I could see and hear the other parents, standing on the sidelines, talking animatedly to each other. It was obvious they all knew each other from school functions and other community activities that I usually miss out on.
Then, I struck up a conversation with the mom sitting next to me, wrapped in her own blanket and also sitting in a beach chair. Her older daughter had gone to middle school with Jamie, and her youngest daughter was on the opposing soccer team. Jamie was sitting next to me, also aching, in his own beach chair, and this mom asked him if he played soccer for his school, too. Jamie said to her, "No, I, uh, have some medical problems, so I don't have the stamina to play for the school team."
The other mom was immediately interested (unusual in itself) and asked what kind of medical problems. I explained that Jamie and Craig and I all have an immune system disorder (standard explanation), and she asked, "Which immune system disorder?" I didn't even finish getting the words "Chronic Fatigue Syndrome" out of my mouth before she excitedly replied, "I have fibromyalgia! And my middle daughter also has fibromyalgia plus lupus." And just like that, a bond was formed - we had each found someone else who gets it!
She and I talked non-stop through the rest of the game, practically finishing each other's sentences...
She: Did you hear the news about the new virus last week?
Me: Yes! wasn't that great?
She: There's this medication that works well for any immune system disorders. It's called low-dose naltrexone...
Me: I take low-dose naltrexone!
She: My daughter's knees have been really hurting lately. I'm worried she might have Lyme.
Jamie: I've had Lyme twice.
Me: I got Lyme last summer, and I'm still being treated for it.
She: Has this fall been bad for you? I've had terrible aches...
Jamie and I together: Yes! Terrible aches!
Immediately, she and I both knew we had found someone who understood, someone for whom we were not invisible, someone who really "got it." It reminded me of the way it feels when I discover a new friend through blogs or other communities on the internet who instantly understands me because he or she is living the very same life.
Something similar happened to me in June, when we attended a graduation party for a close family friend and two - yes, two - other moms there sought me out and asked me all about CFS because both of their daughters had undiagnosed mystery illnesses (both quite likely CFS).
We are not nearly as alone as we feel. It is estimated that there are over a million adults with CFS in the US (plus unknown numbers of kids and teens) and many more worldwide. I'm no expert on fibromyalgia, but I think the estimate for that illness is several million in the US alone. Next time you're out, look around. Chances are pretty good that someone else you see has been affected by CFS or FM, either in themselves or in a friend or family member.
We are your neighbors and friends. We are the parents of your kids' friends. We are the people you see in the doctor's office or (more rarely) in the grocery store. We are everywhere.
We are not alone, and we are not invisible.
We shrunk the party back to just our two families, sometimes it's at their house and sometimes ours, and at one point, I even stopped cooking dinner and ordered pizza instead. I also gave up on homemade cookies and just buy the premade dough now. The kids only care about the decorating anyway! I did manage to make dinner last night, an old favorite from our New Orleans days, red beans and rice, at Jamie's request. But we still gather around the table with bowls of frosting and all sorts of sprinkles and other decorating accoutrements, and we still watch The Grinch (the original TV special, now on video). It's one of our favorite holiday traditions.
