Making an invisible disease visible: writer Beth Prystowsky on her Multiple Sclerosis diagnosis
by Elizabeth Rago
Writing for a living introduces you to a collection of interesting people all with unique stories. I met Beth Prystowsky years ago when we were both writing for Chicago Now, a Tribune Publishing blogging site. Immediately drawn to her style of writing, love of yoga, and overall honesty in her voice, I resonated with her journey as a wife and mother.
But in 2012, Beth’s life took an abrupt and terrifying turn when she woke up one morning with a numb right hand, forearm and foot. The next few days that followed landed her with a Multiple Sclerosis diagnosis and the fear of living life in a wheelchair.
After an aggressive round of steroids, Beth returned home, with no progress of re-establishing feeling of her numb limbs. In fact, she felt worse.
“It doesn’t get easier once you leave the hospital,” Beth wrote in her account online, sharing honestly with readers that while she appreciated the care she received in the hospital, she wasn’t completely convinced the steroid treatment coursing through her body was making any difference.
Cue the emotional guilt of being in a debilitating state physically and returning home to the normal routine of being a mama.
“Laundry makes me anxious. I know nobody cares if hampers are overflowing and piles to be folded decorate my room, but I care.”
Always digging deeper to find the meaning and lesson in life events and unexpected trials, Beth later reflected that she needed to slow down and appreciate the small moments with her kiddos —
“Before this [MS diagnosis] I often rushed through reading my kids to bed eager to get on with my evening, now I savor the fact that I can comfortably cuddle and read some well-written and beautiful stories.”
Fast forward to 2014 and Beth, feeling compelled to start a simple, honest, and informative community for people recently diagnosed and living with MS, launched Modern Day MS.
“I wanted people to know they were not alone,” Beth reflected on her intentions for starting the online platform. “Getting diagnosed with a chronic disease is a confusing moment in life not only for you, but also for those close to you.”
Beth’s platform and voice made people feel welcome, and they started to share their stories on Modern Day MS.
One contributor, 43-year-old Teresa Wright-Johnson, told her story as an MS Warrior and Congenital Heart Disease Survivor.
“I realize that in addition to the physical limitations and effects of my MS, the other most difficult part of my diagnosis is the fear of the unknown. The inability to foresee the future. This remains my Achilles heel. Most of us with MS have imagined instances and situations that may compromise our quality of life. We are anxious because concrete answers are difficult to come by. Medical professionals cannot really provide definite answers to many of the questions and fears we have. The only thing we are certain of is that MS affects everyone differently.”
Teresa is just one story in the 2.3 million people who have MS in the US, according to The National MS Society, and like Beth, she’s dedicated to using her life to empower and inspire others.
In addition to sharing the stories of real people living with MS, Beth has established a well-rounded publication that encompasses discoveries in MS research, current treatments, and alternative therapies.
I asked Beth what supportive words a person can give to those recently diagnosed and she reflected on the difficulty of offering support.
“It is hard. I know my family tries to encourage me, but I often prefer being alone. I would suggest offering to help with dinner, driving and ordinary tasks that can be hard to accomplish.”
In terms of self-soothing and pain management, as MS is debilitating to say the least during flare-ups, Beth adds medical marijuana to her list of effective treatments.
While there are many unanswered questions about the efficacy of cannabinoids, one can’t deny the amount of MS patients seeking marijuana for relief.
Jeremy Reed, Modern Day MS contributor, writes in his article addressing the use of marijuana for pain management:
“There are many avenues in which to extract the helpful properties of marijuana. For people dealing with illnesses, it’s about being as comfortable as possible. It’s about managing and living life with the best available options. If there is a natural substance that can provide that pain management, there is no reason it should be kept from those suffering.”
Quality of life is what we're all after, and living with a chronic disease that soaks in an invisible state makes daily existence debilitating. Exploring all options of relief and resuscitating some semblance of a life is crucial to the mental well-being of those battling MS.
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This article was originally published at The Modern Domestic Woman on Medium.