The Mighty Logo

The Best (and Worst) Part of Living With Chronic Pain

The most helpful emails in health
Browse our free newsletters

Simultaneously, the best things that come from chronic pain can also can be the worst things.

Everyone starts out with pain going ,“I can handle it,” but quickly finds there are a lot of things that come from chronic pain that no one ever told them. I was 13 when my pain started so I was still very young just being in the world, let alone being someone who had never faced something like this.

My pain was just mildly annoying, but that was OK, I could deal with it. I also knew something serious was going on in my body and that my knee pain wasn’t just “normal.” I had to really pressure my parents and doctors to do something about it. The first month and a half my parents kept saying that my pain was just me imagining it and to move on. After the third month straight of pain getting worse and worse to the point where I was icing my knees 24/7 just to feel like I was doing something to help it, that was when we all knew something had to be done.

We did all the tests, and I had three different doctors in a so-called “specialties,” (really they didn’t know much at all, ha). They did scans of my knees multiple times but nothing came from them. And then they decided to do X-rays of my waist down, and eureka!

They discovered that my tibia bones were twisted out (those are the bones on bottom), and my femur bones were twisted in. Thus creating severe bone grinding on my knee when I ran three or four miles for fun.

I remember my parents crying saying, “Thank goodness it isn’t terminal!” I hadn’t even known that was an option! But it didn’t matter what it was, I was going to get better so I could return to running. There was nothing so very free as racing down a pathway, wind in your hair, your heart beating fast to keep up. Little did I know I would never be running again. My biggest regret.

But, you ask, Tierra, what is the best thing and worst thing about chronic pain?

First, I have to fast forward a bit so I can set the scene.

Move forward to when I was 15. At 15, I had my waist down reconstruction surgeries where they broke each bone in two places and then twisted it to be straight and normal. First left leg surgery: so easy I was ready for my second surgery in no time (mentally that is, physically I was still in a wheelchair, it would take eight months to grow my bones enough to walk safely). Second right leg surgery went so horribly wrong my mind blocked it out. My mom tells me I woke up from the surgery screaming and wouldn’t stop until they gave me pain medicine. For five days I woke up screaming again and again only to have to be sedated again and again. The only thing I remember? Telling my mom, “I don’t want to do this anymore.” That would be the first real fight I would have with pain. Little did I know, I was barely at beginner with my knee pain. I was now suddenly forced into a very different ball field.

After that snafu of my epidural not working, it rewired my brain so that I felt tons and tons of pain that wasn’t actually there. Pain is suppose to alert you to problems so you can fix them — now they had all turned into the boy that cried wolf.

Suddenly, I was faced with things no 15-year-old plans for. Physical therapy, excruciating pain and friends and family who don’t understand squat about it to help. My family did good, they tried to understand to their best ability. But you kind of have to learn that in high school, your friends can be way too fickle with understanding or even comprehending the level of pain I had gone through. I learned how to mask my pain. I learned how to keep it in check and how to save all the tears for nighttime when no one was there to see how truly excruciating life really was for me.

And then I stumbled upon the best part of chronic pain.

When you have so much pain, you are truly forced to pick and choose only a few things you can do that day. You can’t go to school, physical therapy and a football game plus two parties planned for after that. You must choose. How much pain am I willing to deal with? And also factor in what else you would be doing that day and the next since the body really needs time to rest.

This is the best and worst thing about chronic pain: learning to pick and choose what is worth our time, energy and more pain is awful and terrible because you want to do all of the things. Everyone else can do those things just fine so it is ridiculously unfair that we can’t. But that is where the best part can be seen shining gently through.

A banner promoting The Mighty's new Spoonie Life Hacks group on The Mighty mobile app. The banner reads, Make life with chronic illness a little bit easier. Join the Spoonie Life Hacks group to get tips from other spoonies for tackling everyday tasks — and share your own hacks! Click to join.

Having to learn priorities and what things came first to me at a very young age, I was and am much more adept at knowing all my limits. When other people go to a silly party and stay the whole time, I leave within the first 10 minutes and in turn find something else I know I will like so my time and energy goes towards good things that lift my spirits instead of simply waste time. I know my time and energy are precious. I cannot and will not waste them.

Seeing that silver lining has made things even better especially during this pandemic. I know that it will be worth staying home and staying safe instead of going to birthday parties and get togethers. I easily give up my tentative freedom to do what I want to instead choose safety for myself and my loved ones. But the best part really is that I can take it. I have lost so much and know how it is to be in a wheelchair, to be unable to walk, to be in an awful hospital room for weeks with nothing but excruciating pain as my constant.

I have been given this gift. Having spent years bed bound, I know how to keep myself sane with books, activities and movies. I have lived so long with limits that get more and more confining I know I am so lucky to not have to struggle with that as many did the first time during the quarantine.

Being unable to do a lot of things may be the very worst part of chronic pain, but I also think we can consider it the best part as we go through life with the ease of one who has lived with restrictions and yet learned to cope, and even — I hope — thrive.

Getty image via phaustov

Originally published: September 1, 2020
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home