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5:01am July 4, 2013

I don’t understand what it is about me that makes me unable to relate to a lot of chronic illness posts here.

And I don’t mind that other people react differently than I do on an emotional level. I just don’t understand it – why I react the way I do, why other people react the way they do, what makes our reactions different from each other in the first place.

I don’t miss who I was before chronic illness. Of course, technically I’ve always had chronic illness. But it’s gotten worse over time and I don’t really miss who I was before that, either.

And actually my life has if anything gotten less emotionally miserable over time, despite an increase in pain, nausea, and other symptoms.

I can’t imagine wanting to go back to who I was when I was physically somewhat healthier but emotionally a mess. It has no appeal.

I don’t feel there’s something I ought to be doing with my life at my age. I never have at any age. Like I never thought that being young meant being carefree, in fact rather the opposite. So I have never resented not being able to live a carefree life the way young people are “supposed” to?

(And I can’t help noticing that the vast majority of people in this planet will never have a carefree life at any age. So maybe the young carefree life is some sort of ideal that only exists in certain cultures? I’ve never expected it. And I’ll admit to feeling stung when a friend, speaking of the inconveniences my disabilities caused them, said “At my age I’m supposed to just be enjoying life, not dealing with this!” They were the same age as me, and never told me that I deserved to be enjoying life with no worries or responsibilities. Hmm…)

I also don’t really feel in general like my life is supposed to be different than it is, except when it comes to oppression. But like I don’t feel like I’m supposed to be healthy and am missing out because I’m sick. I don’t enjoy the pain and the nausea and the malaise and everything else, but I don’t feel like somehow I’m supposed to have a life without these things in it? I don’t know how to explain the difference. I don’t even feel like I’m supposed to have a certain lifespan (I won’t know until the end whether mine is affected or not, but it could be and I don’t feel cheated), or supposed to be able to walk outside the house, or supposed to be able to live outside my bed, or supposed to be able to eat. It’s not that these things have caused me no distress, but compared to a lot of things I read they’ve caused me practically none.

I’m not trying to brag about any of this either, I’m genuinely puzzled. It’s certainly not that I’m any less sick than people who react differently. In fact I am more so than some.

And I don’t think I’m especially strong. In fact it bothers me when people assume that’s the case. It’s like they think it must take an unusual amount of strength to live my life, and I really doubt it.

I know that I have plenty of bad days, and they’re as bad as anyone else’s bad days. But despite that temporary unpleasantness, I don’t feel any ongoing sense of unhappiness from it. Individual bad days remain individual bad days. And it takes a good deal of unusual levels of pain for me to experience truly lasting misery. (Despite always having severe pain.)

I have no explanation for any of this. It is just how things are. I don’t think it makes anyone better or worse than each other. I don’t think it’s because I’m particularly strong.

I’m not even sure whether it makes me that unusual. Because people who are less happy are probably more likely to write about it. And around here at least there are many people who assume that this unhappiness is part and parcel of chronic illness. So maybe people like me are more likely to keep quiet out of respect, or out of fear how people will react. I’ve tried to write this and other posts about this topic many times, and stopped as soon as I started.

The idea that maybe we are more common is pure speculation though. I don’t know the real numbers of people who react different ways to chronic illness. I do suspect people like me are far more common than we look. But I have no idea precisely how common or uncommon we are. Or how many different kinds of reactions to chronic illness exist in the first place.