October 07, 2022
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Amid all the questions, remember to keep living your best life.
Over the past few months, I’ve met several people who are at the beginning of their multiple sclerosis (MS) journey. In thinking about myself, as well as in talking to them, I’m reminded of the late Atul Gawande’s heartbreaking and incisive memoir, “Being Mortal: Medicine and What Matters in the End.” Though he had terminal cancer and not MS, this line rings true for me, and probably many of you as well:
“You may not control life’s circumstances, but getting to be the author of your life means getting to control what you do with them.”
I’m nearly 8 years into my MS journey, and the disease still throws me curve balls. Or at the very least has me questioning some random pain or twitch in its relation to MS at least twice a week.
I’m 8 years into this “new normal,” and I’m both emboldened and humbled by the tension of holding “anything can happen” in one hand and “this ain’t my first rodeo” in the other.
Everyone’s experience with MS is different, but since I have new-to-MS people in my heart, here’s my best advice for how to proceed after receiving an MS diagnosis.
Sure, the line comes from the somewhat dated yet still funny movie “What About Bob?” but taking baby steps when faced with a massive life change is great advice. Just take the next best step. Repeat this every day.
So you just got the diagnosis. Now, what’s your next best step?
A second opinion? If you’re thinking about it, do it! I did this one myself. Think about where and with which neurologist or clinic makes the most sense, and then go for it.
A support group? Great, start thinking about which kind. Do you want to meet in person or virtually? Do you want a group dedicated to MS or one that’s open to people with other autoimmune diseases? Don’t get stuck here. Again, see what makes the most sense and just give it a try.
Questions about MS? This is common, so write down your questions, because if you’re like me, you’ll forget everything you want to ask the moment you step foot in the examination room.
A decision about meds? Read the literature and ask questions.
You don’t have to solve this all in one day. One step at a time.
Freaking out? Find your support. This might look like a close circle of not very many people. This might look like others on this very app.
What you share with anybody is your business and your business alone, but I know that without having at least one person I can go to with the absolute truth of what I’m thinking, feeling, or experiencing, I’d start to spiral down into feelings of loneliness, anger, and fear.
For me, my husband gets just about everything. He has an ocean of patience and empathy, and is able to listen well, to hug, and to respond simply with “What can I do? What do you need?”
Additionally, I have a few close friends with MS, and we text each other when things feel catastrophic. It’s nice to have them because I can go without texting them for months and then throw a bomb their way: Can’t get out of bed. Everything spins. MRI on Monday. And they get it without any further explanation.
This wasn’t available to me when I was first diagnosed. I didn’t know a single other person with MS, but I did have a wonderful counselor, as well as friends and family with whom I could share. And I met lots of people with MS after my first BikeMS ride just 7 months after my diagnosis.
Support is different for everyone, but the important thing is to find what works best for you. Don’t struggle alone.
Matthew McConaughey had the right attitude in “Dazed and Confused,” where he was busy livin’. We get one life, and MS was probably not in any of our imagined fantasies about what life would look like at age 20, 30, 45, 60, or beyond.
We must keep livin’. Many of the things that bring you joy can and should still bring you joy.
Between the daily symptoms so many of us face and the what-ifs that we imagine for the future, it’s common for people with MS to experience feelings of sadness and depression. Depression is real, and no amount of positive thinking can will it away. In such instances, seeking professional counseling may be an important step — I know it was for me.
In addition, plenty of evidence suggests that engaging in both physical activity and activities you love will positively impact your outlook.
I love to hike, and my family and I go when I can. The heat can be a major energy zapper for me, though, so I’ve learned to go when the weather is more moderate or when I will have plenty of downtime to recover afterward. I’ve learned to go easy on myself when I need rest.
If you’ve just been diagnosed with MS, I promise you that you will have friends share stories of their aunt who was miraculously healed by exclusively eating a certain way. You will hear about magical diets, and about supplements (high probability they’re sold through multilevel marketing schemes) that are THE thing you need to help with your MS.
You will get unsolicited opinions about why you should take a certain medication, why you shouldn’t take a certain medication, or why you shouldn’t take any medication.
I’m a people-pleaser and let me tell you, I am the world’s most conflict-avoidant person, but if there’s one area where I’ve grown, it’s to advocate for myself — to take in what’s good for me and slam the door on anything else.
This can be a gentle slam. Sometimes I listen to someone’s story about their ex’s sister’s mom who had MS, but who drank celery juice every day until she cured herself, and I just nod my head. Slamming doesn’t have to be violent. But believe me when I tell you that I will immediately text my husband, “OMG, ANOTHER CELERY JUICE CURE,” with an eye roll emoji.
People mean well and want to help. I believe that. But it’s overwhelming enough to be newly diagnosed with an unwanted disease. You and your physical and mental health trump niceties.
Listen to the good voices and let the others float on by.
While most people are diagnosed with MS between the ages of 20 and 50, some people are even younger when they receive an MS diagnosis. The irony is not lost on me that while they are too young to sign up for the BezzyMS app, health concerns know no age limit.
I’m a teacher and I work with young people. I see firsthand some of their struggles and realize it must be especially difficult to be so young with a chronic illness like MS.
My advice for this group of warriors is the same as the advice above: Take baby steps, find your trusted support, and keep living your life as best as you can.
I hate having MS, but I love the community I’ve found through having MS.
MS is not life threatening, but until a cure is found, it’s in my life to stay. Like most people, I want the best life I can live. I want that for me, and for the people in my life — my friends, family, and fellow MS warriors.
The best way I know to achieve that? When in doubt, take a breath, take a step, and keep going.
Medically reviewed on October 07, 2022
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