What is this Web Site all about?"Well, my dad always had trouble finishing crossword puzzles, too."
Pretty unremarkable statement, on the face of it. But as it turns out, that's the comment that ultimately led me, a PWH (person with health) into the community of PWCs (persons with CFIDS). It was late summer of 1995. I was speaking with a woman I'd known online for a while, who was to eventually become a close friend, a mentor, and in some ways almost a mother to me. We were talking about my volunteering in America Online's soon-to-be-opened Women's Interests Area. I already knew she had CFIDS, but it had about as much impact to me as if she'd said, "Oh, I wear a wig" or "I walk with a limp." I wasn't stupid--I am a medical person, and I thought I knew something about CFIDS. You get tired more easily than usual, and it's thought to be caused by the Epstein-Barr virus. (As I learned later, it's not.) But at the time, I thought I knew the important stuff.
We were conversing pleasantly on the phone, and our talk somehow turned to her illness. She was describing some cognitive effects, and how she sometimes had trouble finishing crossword puzzles.
I chuckled. "My dad loved crossword puzzles, too, and he could never finish them either."
That comment would prove to be a turning point.
I heard it in her voice, immediately--a sort of controlled irritation, a kind of "geez, here we go again" reaction. She told me about how she was comparing herself to herself, not to anyone else. Good point, I thought. She talked about finishing them in ten minutes in the past. Now on some days she'd find huge blocks of blank squares, experiencing a sort of aphasia for the right words no matter how long she worked on it, no matter how many times she came back to it. Wow, I thought. Not what I thought it was about at all. I felt badly about what I'd said.
A few days passed, during which it began to bother me more and more. I kept mentally replaying that reaction I'd heard in her voice.
Finally I emailed her. "You'll probably think I'm nuts for apologizing for this, but I feel badly that I said what I did about the crossword puzzles," I wrote. "I just want you to know I'm not usually that insensitive, and that I realize it was an insensitive thing to say."
Soon a letter came back. "I get that kind of comment a lot," she said. "Don't feel too badly. I recall reacting to you the same way that I generally react to comments of that sort--with a statement that I'm comparing how I am now to how I was before I became ill." She continued. "I'm glad that you recognized it was an insensitive comment and cared enough about it to write and apologize."
And then a wonderful thing happened. She offered to let me read some stories she'd written about CFIDS. But, she cautioned, "you might find out more about me than you really wanted to know." And she gave me a choice whether to read them or not, graciously giving me a way to say no without seeming rude.
I wrote back. "Yes," I said. "I'd love to read them. I want to know. You can't scare me away that easily."
The stories arrived shortly thereafter. I read them straight through, in one sitting.
Thus began my real education about CFIDS. I read about her initial diagnosis. I heard more about the forgetfulness and short-term memory losses and how CFIDS can lower your IQ by as much as 40 points. (Forty points!? I thought.) I learned how little things could grow into monumental undertakings and how good it was to have friends who understood. And there was one more, the most recent one, describing a typical day in her life, filled with a sort of dark anger and frustration.
It took me a day or so for the dust to settle in my head enough to figure out what my reaction was. Shock, certainly. How could a person I knew online as competent and "together" be living such a nightmare offline? Sadness. I felt her grief, shared her frustration and anger at not being able to fix it or control it.
I didn't know how to respond at first. Certainly pity wouldn't be what she needed. Nor overprotection, nor withdrawal. And certainly not blind admiration.
I finally settled for writing something along the lines of, "I had no idea. Thank you for sharing this with me." And I sent her a big hug.
Since then I've been educated further. I read up on CFIDS. I found out that Epstein-Barr almost certainly isn't the cause. I learned about the myriad unpleasant and unpredictable symptoms PWCs have to deal with. My friend told me that suicide is the number-one cause of death among PWCs. By the time I heard this, I wasn't surprised.
And PWCs have to deal with PWHs' reactions to their illness. Most people mean well, but because many are uneducated about the illness, they say some predictable kinds of things that PWCs have to learn to respond to.
There is the disbelieving attitude--sometimes coming from medical people and even physicians--who think PWCs are lazy or depressed, and if they pushed themselves a bit they could do anything the rest of us do. After all, they don't look sick.
Then there are those people who suggest any and every alternative medical treatment in existence and manage to imply, often without intending to, that because PWCs aren't taking the drug or mineral or vitamin supplement de jour, that it's their own fault they're sick.
There are the ones who respond with something along the lines of "My dad never could do crossword puzzles either," ;) or more commonly, "I get tired, too." Unspoken message: So why is it such a big deal with you? You're making a mountain out of a molehill. It couldn't possibly be as bad as you're suggesting.
There are the friends PWCs lose because they fear contagion or think PWCs are mentally ill. There are other friends who don't understand and take it personally when PWCs can't be definite about plans with them or have to say no outright because they know they can't manage the energy expenditure.
And people invariably ask how PWCs are feeling. How would you respond if you felt like shit warmed over, and people asked how you were? People don't know how to respond when you tell them you feel awful. Either that, or they don't want to talk about it. But what's the alternative? Lie? Change the subject--ask them about themselves? Terribly isolating, my friend tells me.
Fortunately, not all people and situations are like this. There are those trusted friends and family members that PWCs feel comfortable sharing with, who listen and support them, trying to learn and understand as best they can.
Information, per se, is not hard to come by. Anyone interested can find out the facts about CFIDS pretty easily, either here on the Web or from print sources.
Often, though, facts and figures aren't enough to get the tragedy of the disease across in a way that's powerful enough to make a difference in the reader's attitude. Unless you are close to someone with the illness, it tends to be just words on a page. We're trying to share CFIDS in another way with the Listening to CFIDS web site, by providing a forum for PWCs to speak from the heart, both to fellow PWCs and to PWHs, about what their illness means to them.
We think other PWCs will discover they're not alone--that they're not the only ones who feel the way they do, both physically and emotionally. There is a community of PWCs who share many of their symptoms and feelings and experiences, and who can relate in a way that PWHs never can.
At the same time we hope that this sharing will educate PWHs about the devastation CFIDS can cause in its wake. We hope some PWHs will become angry enough to want to help do something about it. We believe all who Listen to CFIDS will be better able to support PWCs in the ways they most need it, both privately and in the public arena.
We believe that these powerful words from the voices of PWCs will open doors to understanding between PWCs and many, many PWHs.
Just as they did for me.
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