Living Your Best Life with MS: It’s Not a Death Sentence!
Overcoming the Stigma Surrounding MS
Busting the MS Stigma
By Caroline Craven, as told to Hallie Levine
Picture this: It was 2001, the year I was hit with the bombshell news that I had Multiple Sclerosis (MS). I was a spry 35, but suddenly found myself unable to walk or see without assistance. Talk about a plot twist! Now, fast forward to today, and here I am—thriving against all odds. I’m here to tell you that an MS diagnosis is far from a death sentence. With the right treatments, you can take control of the disease and continue living your best life.
When I first learned about my MS, I had to do a complete life overhaul. I bid farewell to my marketing career—I couldn’t handle office life with the sensory overload and fatigue that came with the territory. Before MS barged in, I was a fearless whitewater kayaker, mountain biker, and rock climber. Suddenly, even the short walk from my car to the parking lot left me drained, barely able to put one foot in front of the other.
In my quest for answers, I joined a 3-year double-blind study on T-cell vaccines at the University of Southern California. As luck would have it, I ended up on the placebo. But here’s the twist: I was doing better than most, and my neurologist jokingly suggested I become the “poster child” for MS. I took her words to heart and became a certified life coach, launching my blog, GirlwithMS.com. The goal? To dish out helpful tidbits on how to conquer MS like a boss—with delectable recipes, life hacks, and valuable resources.
Shattering the Stigma
There’s no denying that the last decade has seen some improvement when it comes to awareness and understanding of MS, especially among medical professionals. They’ve finally grasped that managing MS demands more than just popping pills or getting a prick. To flourish, people with MS need to acquire life skills and seek support from their communities. You can’t truly grasp the juggling act unless you’ve walked a mile in our shoes. While some of us manage to stay physically active, others rely on wheels to get around.
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Unfortunately, the general public is still a tad clueless about MS. Some folks even mistake it for muscular dystrophy—I kid you not! I’m constantly bombarded with questions like, “Are you part of Jerry’s Kids?” It’s not easy to understand because MS is one slippery customer. Upon diagnosis, you have no idea if your condition will remain invisible to the outside world, wreak havoc on your coordination, or even confine you to a wheelchair.
Even when people think they “get it,” they often have a romanticized view of the disease. They envisage celebrities like Selma Blair, but they don’t see the struggle of walking from the parking lot to the store or the judgmental stares when we lean on our trusty canes.
Challenging Misconceptions
So, how can we combat these misconceptions head-on? My advice: be straightforward with the world around you. Let’s take sensory overload as an example. Imagine standing in a room with blaring strobe lights and deafening noise. That’s my reality when I’m surrounded by hubbub and interacting with others. I let people know that my MS is like a battery that needs frequent recharging. When I hit exhaustion, it’s time for a timeout—a moment of solitude in a quiet spot, dialing down the sensory onslaught. Explaining it this way helps folks better comprehend the struggles I face.
Another MS quirk many of us grapple with is temperature sensitivity. While it may feel lukewarm to others, it can leave us feeling drained, with hazy vision and impaired balance. It’s crucial to clue in your family, employers, and friends about these peculiarities. Be prepared to reiterate the information until it sinks in. Don’t shy away from seeking assistance when you need it.
Advocating for Yourself
Step one: find a doctor who makes you feel like you’re chatting with an old friend. Once you uncover that gem, keep a running tally of questions and jot down notes to discuss during your office visits. Far too many of us fear telling our doctors when our current treatment isn’t cutting it or when we’ve had a downright lousy week.
It’s also wise to stay abreast of the latest medical news on the National Multiple Sclerosis Society website (nationalmssociety.org). By doing so, you can have informed conversations with your doctor about potentially groundbreaking treatments. Make sure your doctor is aware of any supplements or alternative therapies you’re exploring and get their stamp of approval.
Shifting Focus for Your Best Life
Now, as a person who lives and breathes MS every day, my work takes me coast to coast. I consult and speak, guiding others with MS on their journey towards a better life. It has a familiar thrill reminiscent of my early career when I worked with startups. It’s exhilarating, and it ignites a fire within me. Here’s the thing: MS is a capricious, progressive disease. We can’t dictate where it takes us. But we can focus on how we choose to live in the midst of the uncertainty.
So, my fellow warriors, let’s make the most of every day. Let’s embrace the powers of laughter, love, and connection. MS may tangle our paths, but we won’t let it break our spirit. Together, we’ll forge ahead and fight the good fight. Life is what we make of it, MS and all. Keep conquering, keep thriving, and keep shining on!
Want more tips, tricks, and tales from the frontlines of MS? Follow me on GirlwithMS.com and join the conversation!
