Life with chronic illness(es) is the craziest, most unexpected tightrope walk. First, life as a "normal" person is turned upside down (which greatly reduces the ability of those around you to identify with you), and often the illness is invisible, which causes many to simply not believe that you're as sick as you claim. All of that is plenty.
But then there's also this funny little rock-and-a-hard-place struggle. For example, do I let myself appear "okay" by actually putting effort into my appearance when I miraculously do go out (the option I tend to go with) or should I show up looking as bad as I feel since somehow makeup and clean hair seems to equate with wellness? It's a tricky thing -- grasping at chances to live normally in simple things like posting a well-articulated paragraph on Facebook, having a good laugh, talking about things other than sickness (yes, I do talk about other things sometimes), or seemingly bigger things like going on vacation (haha) or opening an Etsy shop.
I hate that I even feel the need to point out these things, but it has hit me more than once that my appearance, timed-just-right clarity of thought or momentary positive mood seem to be, to those observing me, little strikes against their (already low) confidence in the truth of my claim of being very, very sick. (You'd think all my test results would be sufficient proof, but seeing is believing I guess, and you can't really see things like Babesia and metal poisoning, huh?)
So to that end, please soak in this non-exhaustive round up of things that do not mean we're lying and actually okay:
Articulation/Ability to Communicate Well
I have found myself in the middle of a conversation in a rare moment of a clearer-than-usual mind with a large percentage of my old levels of articulation. I often (but by no means always) am somehow able to verbally rise to the occasion. And I can't help seeing myself and hearing myself, as those around me must. I realize in those moments that I certainly am not talking like a sick person (however a "sick person" is supposed to talk).
I've mentioned before that those of us who are sick are probably the ones that laugh the most/loudest. I've found my laughter to just get louder as my years of sickness have gone on -- in no way representative of health but rather of my even higher need for something happy and a few-second-long mental break from everything. I laugh a lot. Only because it feels good and I need that. Smiling and laughing have little to do with someone's health or pain levels. To put it honestly, those with chronic conditions simply become so strong from all the suffering that, yes, they can still laugh and smile while in pain, which says not that the pain is low but that the need for relief is high.
I don't have to worry about this coming across the wrong way too much because I'm lucky to leave the house once a week. But when I do, I usually go "all out" as far as appearance. Hair fixed, makeup, jewelry, and a dress. Which often results in me more "dressed up" than those around me. Which must mean I feel better than they do, right? No, all it means is if I'm out, this love-to-dress-up girl is gonna wear what she wants to wear, technically appropriate or not.
Technological socialization is all a lot of us spoonies have. And I find typing on a keyboard almost always easier than holding a phone and talking on it. So my whole body can feel like death, but I'm usually able to at least sit in a recliner and move my fingers at my laptop. Such "activity" in no way suggests any other type of activity whatsoever. When I'm not able to do anything else, sometimes I have to express myself via social media simply in an effort to stay sane.
Further, every time I post something non-health related or -- shocker -- something happy on social media or my blog, I can't help feeling like it subconsciously registers with people: "Oh see, she's fine." Trust me: that is never the case. Our illnesses are always, always there, even if we're not talking about them at the moment, no matter how much we wish to ignore them would make them go away.
Announcements that imply activity
You probably know by now I'm a helplessly creative person. I can't believe the creative outlets I've added to my life over the years that I had never even thought of before, and that fact makes me wonder about all the things I'll continue to dream up as time goes on. But every new pursuit that is public in any form makes me wonder if, as mentioned above, people see those pursuits or accomplishments and think, "Oh see, she's fine."
But you need to understand: I have no "real" job. None of my Etsy shops are booming by any stretch of the imagination. (And keep in mind: I'm the boss of those shops--my productivity, work schedule, and "vacations" are totally at my body's whims.) And my life revolves around those whims and my very messed up sleep schedule, doing dishes and laundry when I can, fitting in multiple doses of multiple supplements at the right times daily, and attempting to keep both my husband and myself fed. Seriously. All of that is my every day. And as little as that seems to be, to my body, that is a whole freakin' lot. And it gets overwhelming, and some days I can't even do half of that.
But some days -- or nights in my case -- are better than others. And that healthy girl who lives buried in me somewhere is begging to come out and create, and sometimes I just have to listen. So when I upload a song I manage to record or share a long blog post or add a new line to one of my Etsy shops or even open yet another shop, just know: those accomplishments were all done in one lucky day or in momentarily able fragments out of many days and are representative of two things: a fleeting semi-able moment that was seized and the need that all of us have to take a break from the grind of life and do something that we love. And for me, that comes in the form of those things above. I try my best to give myself tiny chances to live when I can--and you're probably going to see all of those. But know that they are not the norm. They are just the moments you see.
We are never fine. However well you guesstimate we are based on our appearance, abilities, or assumed activity, one thing is safe to assume: we are probably a lot worse than you think we are.
This post was originally published here, and is reposted with permission.
Kacie Fleming has crammed a lot of learning about health and treatment options into the nearly six years since being labeled with fibromyalgia. She lives in North Carolina with her husband and spends her days (and most nights) working on her handmade jewelry and subscription box business.
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