When I turned 40, I was already sick with my second primary chronic illness. Because I'm now approaching 13 year mark since the onset, it's obvious I've had a LOT of time for reflection. Here's a peek into what I've learned:
With the abrupt and harsh onset of this condition, I was thrown into a demographic about which I had previously given little (almost no) thought. It wasn't even evident at first. I'm relatively sharp. I call myself "street smart", (I say relatively, like if you are a complete idiot, then next to you, I'm SUPER sharp.) so it didn't take long to realize that people REALLY think it makes you stupid when you get sick. The patronizing looks and advice, the overwhelming majority that not only imply, but blurt the fuck out loud that they don't think I'm TRYING hard enough to heal myself. From an illness for which there is no cure. I'll itemize those measly attempts I've made to improve my life. Which spun on a dime, without my permission, into a fucking abyss. The shitty sneers and side-eye looks I get with my handicap parking pass, and now with my cane. The impatience I seem to ignite, just because I'm a bit slower when I move... it hurts.
I saw that the demographic into which I had been thrown, was largely ignored and rejected. I once WAS one of the ignorant ones. So I can tell you this is FACT. Terms like Pre-existing conditions, chronic illnesses, and disability had become the revolving hashtags, spinning in my thought bubble. I suddenly realized how FUCKED UP the entire healthcare system was because I was LIVING IT EVERY DAMNED DAY and prior to the entrance of my OWN condition, I had never given much though to this stuff at all. For the 40 years I was lucky enough to consider myself "healthy" even though the connective tissue disorder is congenital, (which means BORN WITH) I only experienced the cool stuff, like flexibility for body knots, and creepy bends, until the onset of puberty, which was, in my opinion, the on switch for the bad shit to join the party. (That's a story for another time, because I've only begun to look back and ponder the entire line of events, that never felt connected until suddenly they ALL were.)
The next thing I know, I'm just yearning to advocate for this demographic. Now a real member of the club, some atrocities occur to me for the first time. I realize the pre-existing conditions are commonly conditions that were with us when we arrived earthside. So WHY was the system designed to punish us?
The healthcare system tells me that a lifelong condition, over which I have NO control, for which I didn't 'ask', nor did I "self-inflict with a bad lifestyle", etc etc., has now made me essentially ineligible for anything that could provide me with any real quality of life. What the bloody hell is wrong with that picture?
I couldn't get it out of my mind. I had already EXPERIENCED the shit, as the brain aneurysm at age 23 has since excluded me from getting health coverage, unless thru open enrollment. (until A I had my very own pre-existing condition.
I spent years with the inner feeling of turmoil, smoldering, but I felt it becoming a pressing matter.
What's crazy is that it's become bigger than myself. At first I was timid, I recognized my privilege had kept me so ignorant. I also wrestled with the hypocrisy of suddenly "caring" about these issues just because they now affected me. THAT is THE definition of privilege. But here's the thing. When you KNOW better, you DO better. The longer I'm a part of this AMAZING club, I'm feeling that I've suddenly turned my heart inside out, and I not only want to be a voice for myself, and others like me, but also others maybe NOT like me. Pre-existing conditions? Check. Chronic illnesses? Check. and now? Disability. Mobility aids. Discrimination. Stigma. Judgment. Stereotypes I had blindly accepted as truth. Until they weren't. I suddenly feel that I'm on a whole new trajectory, and it's already taken the lead, I'm just following along.
Do me a favor. This blog is REALLY important to me. My being transparent is VERY purposeful. It's also very SCARY. Please be kind, even if you don't like what you read here. If you DO relate to anything, reach out. Disability is isolating.
I'll remind you that my blog is a monologue. I'm here because I felt largely alone through the first decade of illness. I thought perhaps ONE person might see this some day. If anything I've written here can ease a single concern for that person, then it's enough.
Here's the thing. I just tried to proof this before posting, and the truth is this: I'm too exhausted due to today being my 12th day of a high pain flare, as well as a nerve problem in my right hip making it impossible for 2 days and counting, to bear weight on that leg. EVERY time a flare creeps on, I get a nagging fear that this is my new baseline. Then I worry. Painsomnia takes over. I'm now a living zombie. I therefore CANNOT comprehend my own script. Good luck, and good night.