http://thisbodyisacage.tumblr.com/post/5017970202/things-sick-people-dont-want-to-hear

n no particular order, some of the most common rage-inducing things i hear in response to my health problems.

“it’s not that bad.” to be blunt, how the hell do you know? from my vantage point — which, incidentally, is the only one with any relevance in this context — it is that bad. that’s all that should matter. a comment like this is particularly frustrating when it’s clearly in response to how someone sees me behaving at a given point in time. yes, sometimes i have the energy and willpower to put up a good front, to “fake it”. (i was, after all, an acting major.) please don’t punish me for that effort by using it as an excuse to dismiss my struggles.

similarly, “you’re lucky it isn’t worse.” a doctor, of all people, once told me this. i wish i had been alert/gutsy enough to respond to her with something appropriately incisive — but i was of course ill at the time, horribly ill, and didn’t have the presence of mind to craft an adequate retort.

i would never argue that it could be worse. it could be worse for just about anyone in any situation. but that kind of there-are-starving-children-in-india logic makes my jaw clench. i may not be bleeding out my eyes or gangrenous in three appendages or any number of other horrible things, but my body is still entitled to its pain and discomfort. the fact that someone else has it worse does not negate the severity of my condition tome. my illness has caused me to miss exams, theatre rehearsals, birthday parties, thanksgiving meals, and numerous other life events not as easily quantified. it has cost my parents endless amounts of time, money, and tranquility. it has required me to quit my first “real” job. it has contributed hugely to, perhaps even caused — the mind-body connection is a difficult one to parse — my struggles with depression and anxiety. don’t you dare try to diminish the impact this illness has had on my life. you will either make me ferociously angry at you for your insensitivity or needlessly angry at myself for not bucking up and getting on with my ostensibly so-much-easier-than-someone-else’s life. neither of those outcomes will benefit anyone.

“just think positively.”/”it’ll get better.” first of all, i must refer to a source far wittier than i. this sums it up perfectly: http://xkcd.com/828/

look, i know these sorts of things are said with good intentions. in fact, i’ll give the majority of the world the benefit of the doubt and concede that all of the things i mention here are, for the most part, said with good intentions. but that doesn’t make them any less soul-wearying to hear. you don’t know that it will get better. i don’t know that it will get better. in fact, based on previous experiences, i can often assure you that it won’t get better, at least not for a long, long while.

i am the kind of person who hoards quotations about hope and optimism and love like some people hoard newspapers and juice cartons. i am the kind of person who cries at long-distance phone plan commercials and who has several times been referred to as “the one who’s always smiling” and who was once told by a boyfriend, “i should just carry around a picture of a cute animal. that way, if we’re arguing, i can show it to you and you won’t be mad anymore.” i do not by any stretch of the imagination need to be lectured about positive thinking. but the fact of the matter is that even the most earnest, the most wholehearted, the most positive of positive thinking can wear thin over the years. i’ve been dealing with my health problems for close to a decade, and some days my optimism fuel tank is simply empty. things would be a hell of a lot easier if people would just accept that.

and as for the “positive thinking will make you feel better” school of thought, here’s the thing: it might not. in fact, it might even make things worse. there’s a fair amount of evidence to suggest that failing to acknowledge negative feelings may actually perpetuate them; suppressing unhappiness in favor of phony jocularity may very well cause that unhappiness to fester, forever unresolved. simply validating the existence of negative feelings can go a long way towards combating them, while ignoring those feelings is likely to go a long way towards ensuring they linger.

“don’t let your illness define you.” this is a big one. people talk about it a lot, about “rising above” their problematic health, about being “better” than their illness. but the simple fact of the matter is, my illness does define me, and it’d be futile for me to pretend otherwise. just a few of the biggest ways my health problems currently control my life: they prevent me from holding down a job and therefore from living on my own. they greatly limit how frequently i can visit my hometown friends, as well as how much energy i can devote to making new friends where i live now. they force a financial (and sometimes physical) dependency on my parents that all three of us chafe at. they wreak havoc on my sleep, my mood, my eating habits, and my exercise routine. telling me not to “let” all of that define me makes it sound like the amount of power my poor health wields over my life is my fault, like i should just wave my magic wand and make all the restrictions on me go away — as if i wouldn’t have already done that, were there some sort of instantaneous cure-all for a medically constricted existence