The nature of my chronic fatigue syndrome leaves me feeling like I have a double identity. There is Normal Me, who appears to do all the normal mom stuff: dropping kids off, taking them to the park, planning birthday parties (low-key birthday parties!). Then there is the CFS Me: Must nap at the same time each day. I don’t volunteer at school. I can’t let my kids have friends over on early-out days. All shopping (except groceries) is done online. Vacations must have recovery time planned into them or there is hell to pay.
I watched and loved Smallville on TV. Clark Kent didn’t want to tell his friends the secret of his true identity because he was afraid of how they’d react to an alien. I knew just how he felt, except of instead of secretly being a hero, I feel like I am secretly the anti-hero. I don’t have a secret set of superpowers, I have a secret set of weaknesses. I don’t know how people will react if I reveal my true self. My family has lived in this city for nearly three years and I still haven’t found the courage and/or the opportunity to tell my friends. Does it matter if they know?
I’ve tried so many times to explain it before. In some ways, I feel lucky that I can sort of pick and choose who to try to tell. I definitely feel grateful that I am well enough to pretend I’m normal (by normal I mean CFS-free). But it often doesn’t go well. Once I tried to explain how postural tachycardia works. I came home and cried after. Another time I tried to explain by talking about symptoms. Tired all the time and need to nap every day came into it–and the lady I was talking to replied, “Oh! I have that too. It’s called being lazy.” I don’t think she meant to be rude–but golly, the implication left me feeling awful. In college some of my professors didn’t react when when I gave them my disability letter asking them to take my requirements into account with regard to my needs in their class. Is it that hard to swallow just because I don’t look like I have a disability?
Chronic Fatigue Syndrome: which is it? A deep dark secret I share only with those I trust? Or a part of my self that is there the whole time and people will see it if they look carefully? Both?
The question gets knottier, I feel, when I take into account the fact that if I didn’t have chronic fatigue syndrome, I wouldn’t know who I am anymore.
To be continued . . .