Hello, I have CFIDS. Mainstream media calls it CFS, Chronic Fatigue Syndrome, which is horrendous because it prompts a lot of “Hey man, I’m tired too.” I often mumble about keeping the initials but changing the words to Chronic Flu Syndrome – that’s the best sound bite for it. But today I seriously think it’s Chronic Flowing Suggestions.
People have a LOT to suggest. Everything from dietary change to attitude adjustment to antibiotics to antivirals to tai chi to vitamin injections to exercise to the newest drug to… sorry, are you still talking? Every dreamable dietary elimination has been suggested to me multitudinously. Yes, I know your sister’s roommate / cousin’s coworker / neighbor’s mom “had CFS,” stopped eating wheat, and is now running marathons. I’m happy for her, but ya know what? SHE DIDN’T HAVE CFIDS; SHE HAD A PROBLEM WITH WHEAT. Same with corn, sugar, etc. I have tried it all; likewise vitamin injections, meds, herbs, osteopathy, cranial sacral manipulation, etc. Don’t you think I have tried exercising at every conceivable pace and structure? Why would you risk your pretty face asking me that? Don’t you understand that I live in the world? I hear about the religion of exercise just as much as anyone else, ditto with the deity of diet. If you add yourself to the line of people who think I just need to stop being fat in order to be temporarily able-bodied (TAB) again, I have a nice sparkly bridge to sell you. Sharon Wachsler at After Gadget says it perfectly:
“Before you give any advice to a PWD on any topic, think long and hard about whether this is something we might already have more information and perspective on than you do because we live with the disability, ourselves. Also, think about whether they have indicated in any way that they want your advice.”
Cuz here’s thing: the act of giving the suggestion isn’t usually the only thing a suggester wants. There’s a second layer they’re subtly or unsubtly requesting. When an acquaintance told my mother recently that she was going to light candles to make me better (unbidden), she demanded that my mother call her in two months to tell her whether it worked. When people tell me that a drug is being advertised on tv for fibromyalgia (I have fibromyalgia), they want more than to make sure I have that info – they want to know whether I have tried that drug “yet,” and if not, why not, and if yes, what was the result.
It comes from caring, I know. But it’s rare that a person makes a suggestion without also wanting gratitude and some kind of “in” on whether I’ve tried that treatment “yet” or not. If I’m not trying it, there’s an undercurrent of my owing them an explanation. That’s not for my benefit; it’s for theirs. What if I’ve already tried it and had bad results that are personal? What if I can’t try it for a reason that’s personal? What if I think it’s dumb or dangerous? Why are my nitty gritty health decisions newly someone’s business just because they’ve made a suggestion?
Sorry, Tante Fay. I never did try eating twelve rum-soaked raisins per day, no matter what you saw on that talk show. I want to claim I don’t even feel bad that I never followed up with you about that. But I do feel a little bad, and that’s the problem. Believe it or not, it’s not just the buzz about tv’s new star Lyrica, or the immortal gods “eat better and exercise, it’s an allergy, btw have I mentioned your illness sounds fake” that place verbal obligations on me. Even the rum-soaked raisins do a number.
Rebecca Rabinowitz is a Children’s Literature critic. She can be found here.