Why Am I So Ashamed of Chronic Pain?

Why Am I So Ashamed of Chronic Pain?
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I have never liked the term “chronic pain.” Or at least I never used to identify with it.

To me, chronic pain was something hashtagged online for those who don’t know why their body is hurting or how to “handle it.” Chronic pain is for people who get reiki and sing mantras every morning instead of taking their pills, or who don’t know how to manage a boo-boo if no one is there to kiss it, or who are misunderstood by medicine in general.

“That’s not me,” I foolishly and faultily thought. “I know what’s wrong, so eventually, this will go away.”

Currently, we live in a culture that is terrified to admit when it’s wrong. Everywhere I look someone is digging their heels into the social media sand, fact-checking fiction or predicting the unpredictable. Between viral viruses and political tirades, sometimes it feels like we are all more scared of being wrong than not knowing what’s right.

(Courtesy of Bailey Anne Vincent)

So here I am to say: I was wrong. I am wrong. And I know this won’t be the last time.

According to Unarine Ramaru, “Apology is not about saying I’m sorry, but it is the meaning you put behind the apology and admitting that you are the wrong part.” So what was so wrong with me and my false assumptions about the term “chronic pain”?

For starters, I believed my pain was caused by something bigger than my body. Sure, I was experiencing pain “chronically,” as in one surgery after the next after the next. But does that really make it chronic or just connected?

At the start of social distancing months ago, I was extremely determined to emerge on the other side a super-fit butterfly. I began working on my dance technique and muscle weaknesses nearly every day. I created beautiful programs from years’ worth of research, stretching the right things, toning other things, doing nothing “wrong.” (Science, I have to say, would have been super proud.)

But I found myself getting worse and worse. Despite blasts of prednisone, anti-inflammatories, orthopedist brain power, physical therapy, and rest, it has been a steady decline. Now, four months later, even driving a car hurts. This is not how I imagined my butterfly life to be. All of that hard work and #Science, and I’m stuck like the Hangry Hangry Caterpillar.

(Courtesy of Bailey Anne Vincent)

“I am so used to being all or nothing,” I told my new therapist. (Yes, telehealth appointments have brought the gift of therapy, too). “I’m either rebuilding for dance or hurting from health, and I don’t know what to do when stuck between.”

What if there isn’t a fix on the other side? What if this is the new me? What if I was really meant to be a sassy foxy caterpillar all along, and just didn’t know it?

“How much life do you miss by never stopping and experiencing what’s between all and nothing?” she asked.

“Most of it,” I replied. I knew almost instantly that this has to change.

One of my favorite quotes about marriage comes from Christopher Guest, or maybe Jamie Lee Curtis, or maybe both (they’ve been married for 35 years, so same difference). They said that staying in a relationship is a lot like “staying on a bus, even though there is new scenery every day.” You can’t predict where you’ll wake up or what change you’ll see ahead, but you can keep riding and experience the wondrous shifts in view along the way.

(Courtesy of Bailey Anne Vincent)

“I’m not sure why this quote changed my life so much,” I told my shrink (because now I’m a person who can say “my shrink”). “I’m waiting to achieve that pinnacle stasis, the moment of relaxation because I finally made it, it’s finally easy. No one ever told me that never really happens. The work never ends.”

“You just have to stay on the bus,” she repeated. And she’s right.

Maybe living with chronic pain is the same? We don’t always get to predict who we will wake up as or how we will feel. We don’t get to be all or nothing all the time. And we certainly don’t get to judge others in situations we couldn’t possibly understand (like that jerk I was four months ago).

I was wrong about chronic pain. I was scared of using the hashtag for myself because I thought knowing why I hurt and not knowing why made a difference. Now I know it doesn’t.

Hurt is hurt, pain is pain, and it doesn’t matter who diagnoses it.

We all have the right to feel it.

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Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.

Bailey Anne Vincent has been a journalist, columnist and novelist for almost two decades, but is also an altruist, feminist and narcissist, who likes to ask for “fatty sushi” that’s not on the menu (it’s cream cheese, egg and avocado, respectively). She is Artistic Director of her professional and body-positive dance company, Company 360, a professional dancer, and a choreographer who only gets good ideas at 3 AM. As a formally misdiagnosed mutant, she is tepidly settling into the CFTR disorder arena, but doesn’t care so long as there is a Solo cup nearby for spitting. She hates the word phlegm though she’s made of it, is thankful for all her robot parts, and is happiest when warming-up before a performance and smelling the marley (not the pointe shoes. Never smell the pointe shoes). Though she fits somewhere into the grey spectrum of CFTR related illness, her only true identity is in the rainbow of what matters: her two daughters, her cup of coffee, and living near water for as long as possible. And then, yes, a second cup of coffee (because that’s where the meaning of life resides).
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Bailey Anne Vincent has been a journalist, columnist and novelist for almost two decades, but is also an altruist, feminist and narcissist, who likes to ask for “fatty sushi” that’s not on the menu (it’s cream cheese, egg and avocado, respectively). She is Artistic Director of her professional and body-positive dance company, Company 360, a professional dancer, and a choreographer who only gets good ideas at 3 AM. As a formally misdiagnosed mutant, she is tepidly settling into the CFTR disorder arena, but doesn’t care so long as there is a Solo cup nearby for spitting. She hates the word phlegm though she’s made of it, is thankful for all her robot parts, and is happiest when warming-up before a performance and smelling the marley (not the pointe shoes. Never smell the pointe shoes). Though she fits somewhere into the grey spectrum of CFTR related illness, her only true identity is in the rainbow of what matters: her two daughters, her cup of coffee, and living near water for as long as possible. And then, yes, a second cup of coffee (because that’s where the meaning of life resides).

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