How I Manage Day-to-Day Life When Chronic Pain Is My Constant Companion

“You’re never as alone as you think you are. People don’t tend to broadcast certain kinds of pain, so you often don’t see it.”

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

Last week, I wrote about my Chiari malformation story for Chiari Malformation Awareness Month. You can read it here. Chiari is a brain condition that falls under the category of rare disease, but is actually more common than people realize. However, few talk about it. It affects me with chronic pain every day.

It is also Chronic Pain Awareness Month, so I decided to write a separate post specifically about my battle with chronic pain. I don’t honestly talk about my battle with pain very much, and haven’t written a post specifically about it yet. Chronic pain affects millions of people every day. Back pain is the second most common reason people go to their doctors after colds.

And yet pain can make people – especially young 26-year-olds, supposedly in the “prime of their lives” – feel terribly alone. That’s why I’m writing this post: to remind people with painful conditions that they’re not alone.

I have two related conditions that cause lifelong chronic pain: Ehlers-Danlos syndrome and Chiari malformation. In my previous post, I explain them both using child-friendly metaphors, since I am an educator who works with children, and also a mother. I also came up with an educational metaphor for my chronic pain.

 

Imagine that everyone has an invisible stoplight above their heads that tracks their pain levels. Green means “Go” – no, or very little pain.

“Yellow” means “slow down.” I’m in pain, moderate and often debilitating levels, but I’m still able – or at least have – to do the regular tasks in my life, if at a slow, gentle pace. I work, I parent, but with every motion, I am aware of pain. Everything I do sends up a yellow flare: “Slow down! You are in pain!”

And then there is red: “Stop!” This is when one is in so much pain they are unable to do anything else but think about the pain.

I mostly live in yellow. There’s a whole lot of “wait” that goes on with my – and many other people’s – chronic pain.

My pain scale also has adjusted as I have learned to live, necessarily, with chronic pain as my constant companion.

Here’s the thing: I’m never truly free from pain. I never don’t have a headache. I struggle with costochondritis, or chest wall pain that has been severe enough to make me think it was a heart attack, almost daily. I have had several severe pain attacks that have sent me to the emergency room, but my day to day, when I go to work, run around with kids, have fun and live out my call are never pain-free.

My pain makes me have to make hard choices. Right now, the hardest pain-related choice I’m facing is brain surgery on the horizon for my Chiari malformation. The only way to possibly reduce my Chiari pain long term is through surgery, called a decompression, and I have already reached the peak of what other methods, such as medication and exercise and diet, can bring me in pain and symptom relief. But surgery is not a cure, and in some cases, surgery opens the gates for more pain and more surgeries.

And on top of this big pain-related choice I’m wrestling with (update to come), I make little pain-related choices every day. Should I run around with my daughter and risk being in extra pain for another three days? Will taking an extra shift at work make my pain keep me up with painsomnia the next night? While my pain doesn’t define me or my life, it does factor into many of the choices I must make, big and small, on a daily basis.

While I have learned ways to reduce the pain, none of them completely get rid of it. Some days, the medications I take really help. Some days, exercise does; some days, rest does. And some days, none of these things help. Some days, I just push through and hope the next day will be better.

Often, I have a positive perspective about my pain. I admit, I don’t always. Some days, my pain defeats me. I let my pain get the best of me, and I feel like I am nothing other than my pain. It also makes me feel very alone, even when I am surrounded by others. And I am sure I am not the only one who feels this way.

There is a print of a wolf, done by the incredibly talented The Latest Kate, that hangs behind my dresser in my bedroom. The white behind the wolf, which you can see above in this post, is “You’re never as alone as you think you are. People don’t tend to broadcast certain kinds of pain, so you often don’t see it.”

This quote serves as daily inspiration for me. Pain makes me feel unnecessarily alone so often. People are scared to talk about their pain. I’m here. You are never alone.

I encourage people, if they feel open to doing so, to share their pain stories with others. Vulnerability and honesty is one of the best things we can do to deal with our chronic pain. No, it won’t take it away, but it will remind us that we are not alone in our pain. We are all human, and all together. We can live our best lives despite our pain, and it is hard, but we can do it: together.

This post originally appeared on Writer Kat.