How to Keep Heart While Drowning

Sometimes your body is a jerk.

I have chronic pain, and am chronically ill. Explaining that to people is sometimes hard, depending on what their frame of reference is. Stupid things get said, constantly. My least favorite, other than all of them, is: “it’s all a part of getting older.”

My 20’s were a long string of endless illnesses. I was bedridden for months at a time, and in so much pain I couldn’t walk. I had so many doctor's referrals that went nowhere. “Congratulations, your labs are normal! Go home, take Tylenol, and adjust to a new normal.”

So much for being invincible when you’re young.

Chronic pain is a lot of things. Chronic pain is breaking your ankle when you were 25 and skipping the PT—so now you go up stairs a little sideways. Chronic pain is bone spurs, flat feet, poor circulation. Chronic pain is arthritis. Chronic pain is spending 10 years on a skateboard so you have one strong hamstring and one strong thigh and everything gets a little twisty. Chronic pain is an injury to your low back and constant pain ever since. Chronic pain is fibromyalgia. It’s the connective tissue of your body not doing its job. Chronic pain is teeth and claws raking at your joints from the inside. It’s migraines and subluxations and dislocations. Chronic pain is when you lie awake at night with your body on fire, fighting back tears and feeling like this is going to be the rest of your life.

Maybe that’s what makes it hard to understand and explain. It’s so many things to so many people, all at the same time. Mine isn’t yours and yours isn’t mine, but there’s common ground in getting through it.

Sometimes your body is a jerk throwing a tantrum on the floor of a house you wish you could leave, but it’s your house, and your jerk, and there you are. Researching different things you could have, trying to figure out what referrals to ask for, finally asking and being told no. Again.

The hardest part for me was how much of my life I missed. I would be sick for months at a time, bedridden and aching, army crawling out of bed in the morning to go to my job that wouldn’t give me any more sick days, because it hurt too much to stand. I would start feeling a little better, then do way too much and end up in the hospital with another infection. I wouldn’t be able to sleep because my hips and back hurt so badly. I would watch my friends from dance class turn cartwheels getting ready for a performance that I was supposed to be a part of, except I got sick weeks before and hadn’t gotten better yet. I would watch them with my heart breaking and feeling like if I even tried to move at all, my body would break into a million pieces.

In your 20’s you’re supposed to feel invincible (at least according to people older than me, writing articles about how millennials are killing various industries). In my 20’s I felt broken. I felt like life was something that happened to other people, not to me.

Now, years later, I sometimes forget that I have chronic pain. I don’t always think of myself as someone with fibromyalgia, and lupus, and endometriosis. I can go to the gym and dance and ride motorcycles and skate without flaring. I can go do the job I love and I can stand up out of bed instead of crawl. Sometimes I’ll get lazy about managing my condition, and then it reminds me in a big way. But most of the time now, we get along.

At a doctor's appointment once, they told me, “adjust to a new normal.” I decided that was stupid and I wasn’t going to do it. And that was really, really hard. Every day was a new effort at chipping away and figuring it out. Doing whatever I could and being kind to myself anyway. I started to treat my body more like a grumpy cat I live with. The grumpy cat would meow and hiss and fuss, but it went to the vet anyway. I did system maintenance on a system I wasn’t particularly fond of, but I was stuck with it and I wanted to DO something about it.

Here’s some things that helped: figuring out when I needed firmness and when I needed compassion. Cultivating a belief in myself that I was worth caring for. Talking to a therapist. Figuring out an exercise program that actually worked. Getting more sleep. Quitting my terrible job. Making sure I ate food that agreed with me and avoided things that didn’t. Learning how to show up every day, even when I didn’t want to, even when I told myself it didn’t make a difference and I didn’t matter anyway. Being okay with doing less on days where I had less to give.

It was every single tiny decision that I made that got me there.

One drop in a bucket.

One drop at a time until one day I looked up and was someplace good.

Someplace where I had less pain and a happier life and a chance to be the person I wanted to be.

There’s no easy road. “The only article you’ll ever need to read to figure out your whole life.” If only.

And I don’t want to make it sound like everyone can fix everything about pain if they just bootstrap it hard enough. Not even slightly. We all have different access to resources, and different causes and reasons for our pain. Access to preventative and long term supportive health care in most countries is absolutely criminal. Sometimes, our best way through is by adjusting to the new normal of our bodies, our abilities, and the things we have to consider because of our illnesses. The hard part is—how do we figure out the difference between pushing through, and reaching toward? How do we balance the things we want to do with what our bodies need?

It’s hard. It’s REALLY hard.

I found relief, but I still have chronic pain. But now instead of an anvil strapped to my back, I keep my pain in a backpack, and it’s not very heavy. Sometimes I can even put it down.

I do believe that everyone can get some amount of better. I think people with pain can have a good quality of life, experience joy, enjoy comfort, be in loving and respectful relationships with other humans, and gain access to resources they need to feel better than they would without them.

Not everyone is running the same race. I have fibromyalgia, chronic pain, and an immune system that doesn’t really work. I can’t really control that; I can just manage it through healthy behaviors.

I’m never going to be a professional powerlifter, but that doesn’t mean I can’t be strong. I may not be able to social dance any more because I’ll get sick, but I can still dance and go to classes. I want to look towards finding the best possible life I can for myself, whatever that looks like. And truthfully, I want that for everyone. Wherever they are.

Maybe it’s you. Maybe you’ll always use mobility aids—so what? If it helps your quality of life, that’s amazing. Maybe you’ll always have to be extra aware of how you feel, in a way other people don’t have to deal with. That’s fine. It’s not good, or bad. It just is.

You have the cards you’ve been dealt. Sometimes the cards suck. But you get to choose how to play them. At the end of it all, you can choose. Throw your hands out and push back against the voice that says you can’t.

You owe yourself the best possible quality of life. Just because something is taking a long time doesn’t mean it’s not going to work out. Please don’t stop trying. Please don’t lose hope. You can have a big, beautiful, wonderful life, regardless of your pain. You can make it through the dark to see the sun again. For the people who love you. But also, mostly, for yourself.