Hello readers that I assume exist? I’m taking a bit of a break from my story today to talk about something that’s always on my mind: Pain.
3 years ago I started experiencing intense pain with no apparent cause. After some testing and a lot of non-answers, I was diagnosed with fibromyalgia. Fibro is bullshit. Essentially you feel widespread musculoskeletal pain in at least 11 of 18 points on your body for more than 3 months, combined with chronic fatigue and “brain fog” (essentially that feeling you have in the morning that clears as you start to wake up, only for me it never clears). That alone would be shitty enough, but it turns out that chronic illnesses like to live communally; it wasn’t too long before IBS, GERD, and TMJ moved into the commune and I’m pretty sure they got totgether and built a whole new bedroom for rheumatoid arthritis.
On the surface it seems like the worst part of being in pain all of the time would be the pain. It’s not. Don’t get me wrong, that part is fucking miserable, but it’s not the worst part. As horrible as it sounds, I’m used to feeling like there’s a small, angry demon sitting on my shoulders, squeezing my head. I’m used to all of my joints feeling stiff, and the achy muscles that link those joints. I’m used to the reflux and the bloating and the stomach cramps. I’m even used to biting my tongue to keep from clenching my jaw in response to the pain. I fucking hate it, but I’m used to it.
No, the hardest part is how insensitive and judgmental other people can be. So many people take one look at me and assume that I create my own problems by being overweight (because I TOTALLY chose that, and it’s so easy to lose weight when your entire body hurts). Or they assume I’m exaggerating or trying to get attention/pity. That couldn’t be further from the truth.
Before my body gave up on life, I was a pretty busy person. I worked, I went to school, I partied, I DANCED. I was active and I was loving life. I had finally gotten the upper hand in my battle with depression, fallen for a great guy and married him, and was happily growing our little family. I was ready to be the mom I was always meant to be. I FINALLY HAD MY SHIT TOGETHER. And then I didn’t.
Pain took one look at my neatly organized shit, laughed hysterically, and grabbed a sledge hammer. Years of hard work designed to build myself into a functional adult, smashed to shit pancakes.
It’s fucking lonely. Very few people can understand what it’s like, and those few are typically overwhelmed by their own health issues. There are some who care even though they can’t understand, but because they don’t understand they don’t really know how to be supportive and it’s depressing to feel like you’re always bothering the people you love by asking them for help. It’s also exhausting to be struggling to take care of yourself AND have to try to explain to other people what you need from them. I can’t tell you how often I get well-meaning advice from people who want to help, but don’t realize how many things I’ve already tried. I know how to work Google, so chances are I’ve either tried it or read the research debunking the claim already. After all, THIS IS MY LIFE. I don’t need people to fix my problems, I need people who can listen to me bitch, bitch a little with me, and still see my worth afterwards. I’m grateful to have a select few who DO get that, but I have to avoid the people who don’t becuase it sucks the joy right out of me.
And there is far too much joy in my life to let anyone take it away from me, leaving me diminished and bitter for the people in my life who DO matter.