By Mia Maysack, PNN Columnist

When my pain journey began over two decades ago, I didn’t have a “survival technique” or “coping mechanism.”  It was the ideology behind "positivity " that aligned most with me.

Any fixation on my ailments would have surely led to my death. In fact, it almost did, because anyone would start to lose it after experiencing what I and many others have: a lifelong, incurable, untreatable and unending physical discomfort.

Given the negativity that surrounds such an existence, my mission in life became to seek out the silver lining of things. I remind myself that life is a fragile gift, which helps to center and ground me. A slogan I've lived by is: I'd rather be alive and hurting than 6 feet under and feeling nothing.

But as the years passed and medical complications intensified, making the choice to strive toward an attitude of empowerment became not quite as achievable or potent as it had been. I found myself struggling in ways I wasn't sure how to manage. A life I'd rebuilt from scratch began slipping away into chronic oblivion -- yet again.

The distress reluctantly led me back into a clinical setting, where a healthcare professional shook me to my core by declaring: “You claim to be positive, but you're not. You aren’t living that." 

I was stunned! This person did not really know me. I felt overwhelmed at their audacity to make such an outrageous accusation! 

"I’m one of the most positive people I know," I told him. 

"It's not a decision you've made," was his reply.   

I left so perturbed. How dare they?

This individual knew nothing about how my body typically feels, the strength it takes to greet a new day, or to spend and wager absolutely every energy penny I possess just to make it through.

I sat with this experience for a long time, until a light bulb went on and I was faced with the realization: the provider was right!

As my disorders evolve or shift, different approaches and modalities are going to be required. This includes our attitude and mindset. Until then, I wasn’t fully embracing a more uplifting way to live. The pursuit of wellness had been solely residing inside my head, as opposed to being a place where I operated from. Positivity is a lifestyle that needs to be practiced.  

It wasn't possible for me to move forward while also clinging so tightly to my past. I have been shaped by those experiences and wouldn't be who I am without them, but they are not an adequate reflection or accurate depiction of my identity.

For example, a loved one recently shared their disinterest in associating themselves with the word “trauma.” This is somebody whose life has consisted of experiences most would consider to be the worst trauma, but they’ve chosen not to embrace that terminology. Someone else I care about refuses to identify with the word “victim.”

Personally, I attempt to steer clear of words such as “suffering” or being a “patient.” I also refrain from describing something as “negative” or “positive.” That labeling limits my overall perception and eliminates the ability to accept something as it is happening. 

The more I’m preoccupied with judgment or labeling, the less space there is for compassion and curiosity to exist. Of course, there’s nothing wrong in identifying with these phrases -- I certainly have. We’re also trying to gain acceptance from the general public, and relating to our “suffering” and “trauma” makes it more understandable. 

But the power of words and the way we refer to ourselves, interact with one another, and tell our stories, does matter. We need to use the words selectively, without letting ourselves be defined by them.       

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. She is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill. Mia is the recipient of the International Pain Foundation’s “Hero of Hope” award for 2022.