I am not my illness . . . ?

Admittedly, this post may not be for all sufferers of CFS. Those who have recovered in great part and those who were first afflicted after their formative years may find this post moot.

But for some of us–me included–it’s a valid question.

I contracted pneumonia and mono virus simultaneously when I was fifteen years old. It feels a lot more complicated, but the bare bones is pretty simple: after that, I wasn’t the same. It’s like I never left the recuperation period after a long illness. It just went on and on and turned into chronic fatigue syndrome.

Not exactly what you want to have happen when you’re struggling just to figure out who you are, and where you fit in the world. Unsurprisingly, the struggle for identity and the struggle for wellness became enmeshed. Nineteen years later and counting, I couldn’t tell you what parts of me are strictly Isabella and which are my CFS, filtered through my personality. (Cuz it’s not the thing itself, it’s how you react to it–right? *wry laugh*)

For example, am I shy or does it make me shy?

Am I a forgetful ditz or is that just the CFS talking? (I’d say brain fog is the problem that bothers me the most. I really hate when I’m in a conversation and I can feel my brain losing information like an over-saturated sponge loses water.)

I’m not even sure if it matters. What matters is this: it’s hard when you don’t know who you are. In this culture, a lot of who you are is determined by what you do, but when that changes on a daily basis, how is the decision made?

And another scary question I think that all sufferers of CFS face: does having CFS affect my value as a person?

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Secret Identity

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 . . .

Introduction

This is a blog by and for those suffering from chronic fatigue syndrome/myalgic encephalomyelitis (and anyone else who cares to stop by). I am writing this blog with my sister, so we have decided to write under the name of a pair of sisters from Jane Austen’s Emma: Isabella and Emma Woodhouse. In case you were wondering, it’s Emma writing this one. We burst out upon the world with little or no fanfare, but we hope to garner a few readers along the way. We will be writing posts about our day-to-day experience of CFS, and sharing our thoughts, feelings, and frustrations about living with this illness. We may even branch out into discussion of what we’ve tried; what helps and what doesn’t. A movie review or book recommendation may occasionally pop up. But if you know anything about chronic fatigue, you know we can’t go making extravagant promises about writing regularly. I’ll end with that caveat. Please come by, and comment if you like!