Choosing Happiness: Why I Will Not Be Defined By My Chronic Illness

Sep 22, 2021

Stephanie Bain, Body Alive Owner & Master Trainer

Stephanie is an ERYT-500 YACEP, ACE Certified Personal Trainer, ACE Certified Group Fitness Instructor, ACE Certified Health Coach, Food Coach (Holistic Nutrition), Dance Teacher, Certified Dance Fitness Instructor, and Barre Instructor. She has led thousands of classes, as well as many trainings and certifications.

I wouldn’t wish chronic fatigue on my worst enemy. It’s a thief in the night coming to take your strength and motivation. It’s an isolation and a desperation hard to understand, and even harder to explain.

And yet- it drives me to be who I am.

PBC, or Primary Biliary Cholangitis, is a so-called auto-immune disease of the liver.  Typically diagnosed at “middle-age” (let’s make that term a beautiful thing!), I was shocked when in my late twenties my liver specialist gave me the news like he was ordering his bagel. “Full cirrhosis likely,” he said casually as he looked at me across the desk in the ten-minute appointment that would shape many years of my life to come.  

PBC is very rare, and like so many other chronic disorders, can be extremely debilitating. It’s estimated that in the United States, chronic disease affects over 130 million Americans, and while men suffer from a number of chronic conditions, a significantly large portion of those affected are women. The doctor offered me a life of checking off the boxes of “liver disease,” and counting the time between frequent appointments. He told me I’d have to learn to live with the fatigue. How many other people were living the same way, feeling disconnected and somehow let down by their own bodies?

I laid on the floor the day the official word came down. Right in the middle of my living room, all by myself and I couldn’t even cry, I was so tired. Even my bones hurt. I was lost and didn’t know what to do to keep going.

Driving home from work the next day I was taken with the trees outside. Somehow just seeing them, they looked greener, brighter, more full of life. The birds seemed more active and happy and I felt the world move around me with activity and passion. Feeling like I had a death sentence, I began to really SEE the world and it was so much more beautiful than I had ever noticed.

I believe that the spirit of a warrior lives within each of us, and it was at the time where the weight of my life had me living in my wounds and I didn’t even feel that I could continue that an undeniable spark was uncovered. I would not go gently into the dark night- if I had to crawl to move forward I would.

This is what spurred me to study nutrition and receive my diploma with the CSNN. To continue my yoga and dance education (this is what made me feel alive), and to participate in other fitness certifications. The spirit in the heart of each group, each person, each story of challenge, heartache, and perseverance was like kindling to my fire inside. Everyone was overcoming something, moving forward, growing stronger.  Groups of amazing people came to be taught and to share their vulnerability and I was moved beyond words.

A therapist once told me, while I was living in the dark, that we have to “choose happiness.” I almost couldn’t say it out loud. While I lived in my wounds, I didn’t feel like I had a lot of choices, and the story of “what had happened” seemed louder than the possibility of happiness. How could it be a choice with that diagnosis, that story, that past?

She was so right.

Often the image is one of perfection while leading or mentoring. A projection of strength both physical and mental- “nothing and no one gets me down!” How impossible.  Inspiring? Maybe. Attainable? No.

I couldn’t cure PBC with nutrition or yoga, or acupuncture or herbs (I tried and some things did help.) I couldn’t escape how my past had made me feel. I couldn’t make my first marriage work because it was not a healthy one for me. Some things in life are absolutely not fair, not the way we want them, and possibly not-fixable.

And some things are within our control. Choosing happiness. Choosing strength. Choosing what those two things look like for you today. Sometimes strength is stopping and reflecting, or recharging. Strength is persevering and creating your own limits as you relentlessly move forward.

The fatigue of PBC still comes and goes, but to be honest, it doesn’t affect me the same way anymore. I conserve and preserve and use that “immoveable” time for something nurturing, something still. And that fatigue has taught me that life is a GIFT and that today is to be enjoyed, revered even, and that the world functions best when we encourage and support each other and lift each other up.

I became a personal trainer, health coach, and master trainer because I could not stop growing because regardless of what my energy may tell me today, I have God-given gifts that are meant to shine.

When you are in my class I will encourage you to push, to dig, to celebrate this strength, this breath, this glorious or challenging day. And trust me, it will be a big passionate challenge.

Through our greatest adversity, our greatest self awaits. Be vulnerable, be daring, and remember that if you stumble, you’re human. Your awakening is in the recognition of what you are leaving behind as you walk powerfully forward, fire burning bright.

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