MS: Beyond the Diagnosis
Written by: Jen Johnson
When my cousin Michelle (born and raised in Kansas City) was in her 20s, she had her first child, which is life-changing on its own. But around that time, she started to feel like she was looking through a screen door with her left eye. By 29, parts of her body were going numb. An MRI and lumbar puncture confirmed the shocking news-she had Multiple Sclerosis.
Multiple Sclerosis is thought to affect more than 2.3 million people worldwide. The average person in the U.S. has about one in 750 (.1%) chance of developing MS, according to nationalmssociety.org.
Why my cousin? Well, she’s a woman. MS is at least two to three times more common in women than in men. Also, she’s Caucasian. Research has demonstrated that MS occurs in most ethnic groups, including African-Americans, Asians and Hispanics/Latinos, but is most common amongst Caucasians of northern European ancestry.
What does an MS diagnosis feel like to a new mom? I asked what her first reaction was, and she said, “What the heck is MS and what does it mean for me? I was given a pamphlet and told to take a prescription (shots in my torso, arms and legs) and I decided I would never be in a wheelchair...I never have been!”
I remember going to a concert with Michelle a few years ago. After the show, there were some stairs as we left our seats, and she had to keep a hand on the wall to steady herself, and she wobbled a bit with each step. A man (probably in his 40s) laughed and said, “wow, how much did YOU drink?” It took everything I had not to yell, “SHE HAS MS YOU INSENSITIVE IDIOT!!” But the truth is, most people DON’T know what MS looks like. It doesn’t show itself like more obvious diseases. It looks like fatigue, bad balance, and poor coordination…which yes, can simply look drunk. As Michelle says, “Even if I look fine on the outside, my body is going haywire on the inside.”
What’s actually happening in a person with MS is that an unpredictable, often disabling disease of the central nervous system is disrupting the flow of information within the brain, and between the brain and body. Michelle says, “it won’t kill you, but some days, you might want to die.” There are currently 17 FDA approved "disease modifying" drugs on the market to reduce inflammation and the frequency and severity of attacks, but there is NO CURE. In 2014, the average cost of treatment for an MS patient was $78,000.
The most disheartening thing I’ve learned in talking to Michelle about MS is when she said, “Many of my MS friends no longer can rely on their family or other friends because they're seen as lazy or faking. This disease is FOR REAL!! It's disabling, it hurts and is often depressing.” That immediately made me ask how we CAN be supportive and helpful. She says, “Just let them know they are significant. Don't treat them differently than before their diagnosis. If they aren't able to do something, they need to decline. Don't overwhelm them either. Shopping all day or partying all night used to be a blast. Now forget starting with breakfast, because we won't be out of our pajamas ‘til noon and IF we get out of them, back in them by 7pm.”
Every spring for the past five years or so, I start hitting up my friends for donations for Walk MS (at Kansas Speedway). The money we raise helps fund services and research so people affected by MS can live their best lives as we end MS forever. I raise money and walk for Michelle…and the 2.3 million others.
Jen Johnson co-hosts The Show with Jen and Truta on KC102.1 in Kansas City weekday mornings from 6-10 am. She lives in Overland Park with her husband and two daughters (ages 9 and 7). Random facts about Jen: she was an extra in the movie Derailed (with Jennifer Aniston), she lived in Alaska for a summer, she was a traffic reporter for NBC in Chicago, and she tore her ACL playing basketball in college. She’s passionate about fund-raising and participating in Walk MS (multiple sclerosis), Cure SMA’s (spinal muscular atrophy) Walk-n-Roll, and raising money for Variety KC. Twitter/Instagram @jenkc1021