Before season four of Once Upon a Time started airing live, I watched it on Netflix from season one, to see what all the hoopla was about. My friend explained to me that all the fairy tales had twists to it, like princesses saving princes and the evil queen having a heart.
I became a fan of the show, as it touches upon the old adage of not judging books by their covers. Once Upon a Time encourages audiences to forget old biases and preconceived notions. We all hope for a happy ending, and we all have different stories.
On the surface, my life could be mistaken for a fairy tale. I am happily married with two children, and my husband treats me like a queen. I live in a nice suburb, and I enjoy many creative endeavors. I don’t work, and it seems like I have a lot of time on my hands. In reality, I struggle daily with multiple sclerosis.
On social media, there is nary a word that is negative, because for me, Facebook is for fun and connecting with family and friends. I’ve chosen not to wear my suffering on my sleeve, like many others with chronic illnesses. Many are aware of my diagnosis in my inner circle, I have the support of family, friends and even strangers in the MS community.
Unfortunately, my choice to not air my dirty laundry has invited some comments rooted in lack of awareness and wrong assumptions.
“I wish I could sleep as much as you do.”
Yes, I do sleep a lot, but it’s debilitating. I’m awake for about ten hours, and I’m alert for just half that time. My sleep is accompanied by ugly symptoms that include restless legs, numbness, tingling, nightmares, and even bladder incontinence. I take three-hour naps, then wake up not knowing where the time has gone. Blacking out like this, and driving while drowsy, are downright scary. I go through days feeling like a zombie, rather than a sleeping beauty.
“I wish I didn’t have to work.”
In my prime, I was working full-time as a social worker for a public clinic, and per diem as a crisis worker at the local emergency room. I was proud of the work I did. After investing time, effort, and money into graduate school, I definitely had no plans to stop working five years into my career. I don’t work because I can’t.
“MS is not the worst disease you can get.”
I know I don’t have a terminal illness, but living with multiple sclerosis isn’t so great either. I am 38 years old with a brain that has aged faster than a senior citizen’s, and I worry about dementia at a young age. I live with symptoms beyond my control (much more than mentioned here), which keep me from being the woman I was and still hope to be.
In short, my life is no fairy tale. If I look happy in my photos, it’s because I’m actively trying to live my life the best way that I can. I refuse to be a damsel in distress, and choose instead to be a knight in shining armor—fighting to raise awareness for MS—because no one should have to wear their suffering on their sleeves to get respect and compassion.
And so, I’d like to end with another adage:
“Before you speak, ask yourself—
Is it true?
Is it kind?
Is it necessary?”
Asking yourself these questions before you speak can lead to more productive and honest dialogues, without any bias or assumptions. And instead of pushing people away, you may just get to know the true stories of day-to-day heroes overcoming their struggles.
Can you relate? Do ever feel you are part of a fairy tale? Do you watch Once Upon a Time?
Shortly after earning her MSW degree from Columbia University and starting a career in psychiatric social work, KM was diagnosed with multiple sclerosis. She joined MS Bike Ride in spring 2014 and hopes to become an MS advocate someday. For now, she continues to explore ways to make use of her talent and skills. Whenever she can, she volunteers for NJ Hopeline and keeps a food blog, theoldblueeats.blogspot.com. She lives in New Jersey with her husband, two children, and her nursemaids—cat, Mali, and dog, Moby.