... you see me eat a cookie. It most likely means I am so hungry and tired of protein drinks and Kefir that I am willing to cope with nausea and/or vomiting just for a moment's pleasure, for a mere morsel of a food I have not tasted in years. It might also mean I am fully convinced I will die TODAY if I do not find a way to consume more calories, even if doing so means agony beyond compare.
... you see me out, perhaps enjoying a movie or concert or watching my daughter's school play. It most likely means I am so tired of looking at four walls I could scream, and if I do not get out for just a few hours, I fear I will go insane. It also means that even though I will pay for this dearly with pain and fatigue, it is worth it just to see a smile on my daughter's face for a change -- to know that for a brief time, we did something "normal" together and I did not disappoint her, as I have done a million times before, by my absence. It also undoubtedly means I have gone completely without any sort of nutrition for the few days leading up to this event because that is the only way I can manage to leave my home now -- as eliminating life-sustaining food and drink is the best chance I have at also eliminating the pain and nausea which would prevent me from attending such outings. Oh, and when the event ends, I will most assuredly go a few days more without nutrition, as the outing itself will sicken me to the point I cannot immediately bear the added suffering of eating and drinking.
... I say I am fine. I do not mean "fine" as you perhaps define it. I mean that as a serious, excruciatingly painful, life-altering, daily chronic illness goes, this is not one of my absolute worst days, and I may actually survive it. Alternately, I may mean, "I know you do not really want the truth and are simply being polite, so I am going to do us both a favor and tell you what you wish to hear, even though I feel as if I may collapse at any second." My smile often masks my true emotions and symptoms and is intended only for your comfort.
... I speak of a medication, food, or therapy helping a bit. Perhaps one of my treatments brings my pain level down from a 9 to a 7 or means I experience nausea but no (or rare) vomiting. This does not mean I am suddenly able to function at 100% or that I am now fully participating in all normal, pre-diagnosis activities. Further, simply because a therapy helped today, that does not mean it will tomorrow, and, in fact, all "remedies" I have ever tried have eventually failed to improve my situation. Oh, and one more thing... when you ask me if I have tried "X," rest assured, I have.
... I write an essay, post a video clip, or join a Twitter chat. It means that, despite the struggle, I manage to show up and fight because I love this community dearly and NOTHING is more important to me than finding them (and me) a genuine cure.
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CAN YOU SEE US NOW?
CAN YOU SEE US NOW?
