I was once asked what I’ve learned from living with an incurable disease. I didn’t really have a determinate answer, but I did say having chronic illness has given me a deeper compassion, one I can’t quite explain. Being a young woman in her mid-20s, most people think I’m in perfect health. However, on the outside, I look nothing like what my body has really felt like for the past three years.
Swelling, joint pain, raw stiffness, throbbing muscles, needle-burning pain and fatigue were just some of the things my body woke to one September morning in Colorado. My body was not my own; everything from my knees, shoulders, hips and hands were all in pain. I limped to my bathroom to brush my teeth, but my hand couldn’t hold the toothbrush.
I did the best I could that morning despite the overwhelming confusion and drove to work with just the palms of my hands to steer the wheel. After eight months of grueling doctor visits and pain that went unclarified, I was finally diagnosed with systemic lupus after my 23rd birthday. I’ve done everything from changing my diet, exercising, taking medicine — but nothing permanently takes away the flares of pain.
The word “accept” by definition means:
A) To receive willingly.
B) To endure without protest or reaction.
I don’t accept lupus because that would mean enduring this disease without objection, which means no battle. No battle means I’m not fighting.
But I fight for normalcy despite pain. I fight for staying in a job I love despite the physical exertion it requires working with children on the autism spectrum. I fight telling my body every day that she doesn’t have to accept this disease, because isn’t that what we’re supposed to do when any kind of pain tries to become the boss in our own lives?
In the past three years, I’ve had my fair share taking extra pain pills in the mornings, canceling day plans and praying through sleepless nights. I know the forged feeling of putting a smile on your face in front of people when all you want to do is lie in fetal position in your warm sheets at home with heat pads. I know the feeling of adding layers of clothes to your body during the fall and winter because your body starts to flare — but it’s still your favorite time of year.
Maybe pain happens to people for greater purposes than we think. What if pain doesn’t have anything to do with what we put in our bodies, and it has more to do with something that can’t be seen but felt. Perhaps pain gives us a gift of something greater; a phone call to a family member we haven’t spoken to in a year or the courage to start something we’ve always wanted to. Maybe pain doesn’t leave because it’s supposed to keep teaching us something otherwise lost — something deeper, something that helps others and not ourselves. Pain is a bittersweet blessing in disguise in my life, and it constantly reminds me of others who are facing challenges.
I don’t know when this illness will go away or if a cure will ever be found. I don’t know how my pain will look like tomorrow or in the next week or month, but I do know how I can fight it.
I fight it by doing what I love, even if that’s altered in some way. I’ll keep teaching children and spinning them around in my arms on the days my hands and elbows haven’t given up. I’ll endure jogs on cold mornings when my knees aren’t swollen or my chest doesn’t ache. I’ll drive to a friend’s home to have coffee on the nights I’m not physically drained. And I’ll keep cutting my hair because Lord knows I can’t spend an hour every night brushing a horse’s mane. I’ll still lie on the autumn and winter ground, feeling the crunch of leaves beneath my feet or snow soak in my hair. I’ll keep giving and loving.
I’ll keep doing all these things because if I’m breathing, I’m counting my blessings. I hope you do too, dear friend.
also published on The Mighty here