I’m writing this in the midst of a terrible fibromyalgia flare-up, so forgive me if it’s not the most coherent.
As I was laying on my couch this morning, struggling to find a comfortable position that didn’t exacerbate the pain, I was thinking about how scary it can be to live with a chronic illness. Chronic illness is one of those terms that encompasses a ton of different illnesses, and everyone’s experience is different. But one thing I’m sure many of us who live with them can agree with is that the unpredictability can be all-consuming.
It’s scary when your body feels like it’s not functioning the way that it’s supposed to. It’s scary that there’s no explanation as to why you’re the one living with it. It’s scary that you never really know when your symptoms are going to flare up. It’s scary to have your life completely change because of something you have no control over. It’s scary to feel useless, immobile, less than. It’s scary to feel like you’re dying sometimes, or your body is shutting down. It’s scary to worry about how others are going to react or to constantly fear that your loved ones are going to give up on you. It’s scary to feel like no one believes you.
I see a lot of people discuss the sense of grief that comes along with chronic illness. You have to mourn the life you once had, and learn how to navigate through the illness to create a new life. It feels a little bit unfair. I didn’t cause this. I wouldn’t wish this on my worst enemy.
I’ve done a lot of research on fibromyalgia, specifically, and while there isn’t a known cause, there’s a somewhat consistent belief that it’s neurological. For those who don’t experience fibromyalgia due to a sustained injury, it’s suspected that things like consistent stress or trauma can cause it. To me, that’s terrifying. Are our brains really so powerful that they can just like, spawn new illnesses as a reaction to stress and trauma? That sounds dumb, I know. Brains are powerful. But it doesn’t help that perpetual cycle of guilt and self-blame that us with mental illnesses deal with to think this could literally be “in my head.” I don’t think it’s that simple, but still. I would hope that I had enough control over my brain that I wouldn’t unconsciously let it hurt me even more.
I’m scared that I’m stupid now. The brain fog is terrifying. It’s terrifying to forget what you’re talking about in the middle of a sentence. It’s scary to struggle so much to concentrate, to finish a simple task, to do things you once loved doing. It’s scary to lose your memory. It’s scary when you’re someone who used to be so articulate, and now, sometimes, you can’t even finish a sentence. It’s scary to be out in public, when you’re already terrified of being out in public, and forgetting where you are or what you’re doing.
I’m scared about how I’m going to integrate myself back into regular life. I’m trying to do it slowly. I’m working really, really hard to take the steps I need to in order to get my life on track. It takes so much more effort than you would know to do even the simplest things that those without chronic illness don’t think twice about.
I don’t feel like I can type anymore because my hands are freezing up and my wrists hurt. I’ll leave you with this: if you have a chronic illness, no matter what it is, I’m sending you a big hug and a giant tub of patience that tastes like your favourite ice cream. Be patient with yourself. It’s frustrating and scary, it takes time, but you’re going to find your new normal and it’ll be wonderful.