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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5 thoughts on “I am not my illness . . . ?

  1. You’re questions are perfectly normal I was the same age as you when I was diagnosed now 10 years on I look at it different. How many of your friends without CFS know who they are? Don’t know? Ask them I guarantee they will not know either. If you let cfs define you then you will become the illness. And the second question no Cfs doesn’t affect your value if you don’t let it. Keep fighting and you will figure this out yourself but give in and you will allow it to define you. Be who you are be it bad days and good. Forget the days you can hardly remember your name and treasure the days you can. Good luck x

    • Ok so I just reread your post and realise I totally miss read it and my comment wasn’t helpful sorry. (Im having one of those days)

  2. I don’t think it matters what age you fall ill at, chronic illness takes away so much of the life you used to live that it is hard not to question your identity and worth. You highlight some very important questions, and ones I expect all sufferers have to deal with at one time or another.

    • The question came up one day when my mother and one of my sisters (not Emma, but another sister) were agreeing they definitely knew who they were, distinct from CFS (my mother becoming ill after age 30, and my sister recovered). I couldn’t say the same for myself and I wondered why–the thoughts of this post are the result of wondering. I’m glad to know I’m not the only one who’s been here–thank you for your comment!

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