The blog I ran before this one was called Life Despite Lupus. It mostly centered around my experiences living with various symptoms, undergoing various treatments, and the little tips and tricks I picked up along the way. The following is a story I frequently thought about putting there but always decided against. It felt too personal, too close to the nerves, too polarizing for what I was trying to accomplish there and at that time. But, I think I’m finally ready to offer this particular tale to the world.
Especially early on in my diagnosis, I spent a fair amount of time reading lupus blogs and going to live groups (my mother insisted on dragging me to every one she could find). I ran into a lot of people who were very vocal about how religion played a big part in their coping kits or how their diagnosis had encouraged them to re/discover their religion.
For me, however, I only really began to cope with having a chronic illness and find some measure of happiness when I let my religion go.
Bad Little Christian Girl
I was raised in a moderately religious household. My mom was the least religious of her sisters, so we only got dragged to church once a week. Still, I went to Sunday school, bible camps, sang in the children’s choir (hidden in the back row because I sang like a chain-smoking frog), you name it.
I was not a good Christian girl, not by the standards I was raised with anyway. I hounded my poor mother with all kinds of post-sermon questions (to the point of getting snapped at more than once), complained endlessly about going to church, and got busted once with Buckland’s big blue book in my backpack (which my Mom still loves to bring up twenty years later, making each new retelling way more dramatic than the last).
When my illness started to get bad (worse, it was pretty bad through and through) I was prayed for, prayed over, hell, even anointed with oil (I have an uncle who was a deacon or a minister or something). My more religious family members gave me “council:” pray, pray, pray more, and thank god for the wonderful way I was handling things. They praised my positive attitude as a sign of faith, constantly reassuring me that god would heal me at some point, maybe, and to be comforted by the idea that there was a plan for everything.
No matter the attempts at comfort, my brain always swirled with questions. I’d been told repeatedly that god was responsible for everything, literally every single tiny thing that ever happened. Hell, I still remember lines from old choir songs about how every breath comes from God, every strand of hair, yadda, yadda, yadda. So, then how was I, as a young-ish adult, supposed to see things? That a supposedly-benevolent supreme deity purposefully inflicted a painful, eventually debilitating disease on an infant and I supposed to sit back on my pain pills and be grateful? Blindly unquestioning? Why? Why me?
The whole thing made me pretty damn depressed.
In the end, I had a realization: fuck it. I decided that I was going to live the best life I could, on my terms, and by my definitions despite what I’d been taught about how the world works, despite what my family said, despite god him/itself. Fuck it, I wasn’t going to wait around to be fixed or for my illness to make sense; I was going to live my life.
And I feel like I ought to make a distinction here, of my doing something to spite god and my doing something despite god. My little epiphany wasn’t a general “fuck you” to religion en masse (well not entirely). It was a choice by me to stop waiting for someone or something to save me. It was a choice to stop looking at my actions as potential brownie points that I could leverage for wellness or salvation. It was a choice to get off my knees and on my feet, to stop begging. It was a choice to just live.
I’m not an atheist. I’m not really anything at this point. I don’t use religion (or lack thereof) as a compass, not for morality, purpose, or direction. I still pray out of habit, but I don’t ask for anything, not to be healed, not for miracles, not for anything more than a good night’s sleep and some good dreams.
And how do I feel about it?
It was a freeing thing for me, letting go of the feeling that I was at fault for my illness, that it was some kind of punishment I didn’t know how to atone for. It was letting go of the idea that I wasn’t good enough to be whole. It was letting go of this idea that being pain-free was some prize being dangled out of reach because I wasn’t praying enough, or didn’t have enough blind unquestioning faith. It was letting go of the idea that I couldn’t start living my life until I was better…whatever ‘better’ might actually be.
But that’s just me.
Like I said, I’ve heard a lot of stories from people about how religion gave them the strength to keep moving forward. Good for them; I’m not going to tell anybody how they should cope with a chronic illness. But for me, I found more strength once I walked away from my religion, though in all honesty, it was never a good fit for me in the first place.
And no, I’m not healed. I still struggle with lots of health hiccups, large and small. But whether I’m ever healed or not, I’m not going to wait to live my life.