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Take the lead in how friends, family respond to your MS

By Dan Digmann
Take-the-lead-in-how-friends,-family-respond-to-your-MS_1.jpegLiving with multiple sclerosis isn’t easy. I hear you. The predictable and unexpected realities of this progressive disease of the central nervous system challenge us with every day, every minute, and potentially every second of our lives. 

The numbness in our limbs, extreme levels of fatigue and uncontrollable bladder issues merely scratch the surface of the myriad symptoms we collectively deal with. It affects each of us differently, right?

And for as much as we want to turn to our family and friends for their help in dealing with and getting a handle on our MS, they don’t always get it. The naysayers say, “It’s all in your head.” Ill-informed sympathizers say, “I get tired too.” People stuck in the past say, “You’ve changed and aren’t as fun as you used to be.”

So much for support.

Still, how can they “get it” when we all are seemingly still trying to wrap our heads around this complex disease that we each live with 24/7? I’ve lived with it for more than 21 years and my loving wife, Jennifer, has had it for nearly 23 years. It continues to boggle our minds both literally and figuratively.

This is why I’m encouraging you to stop, clear your head, and think about taking a different approach in how you live with MS. Yes, it is powerful, can adversely affect our minds and bodies and determine how and how much we move around from Point A to Point B. It truly is out of control, but how you respond to its uncertainties is totally within your control.

And in getting that under control will help you to take the lead in how your family and friends respond to you and your life with MS.

Remember that they’re looking to you

None of us asked for MS. It just sort of eased its way into our brain, spine, and central nervous system. Unwelcomed. But it’s here, and we are the reasons that our family members and friends all know of and are thinking about MS. 

Over the years, I've learned that I’m the one who sets the tone for what this disease is and how I’m moving forward with it. Because I’m the person living with MS, the people around me often are taking cues from me in how they react to it.

I take a lesson I learned from my parents after I got older and moved into my own home. Only then did I learn that my mom is terrified of thunderstorms. Wait, what? I was the one who hated storms when I was a little kid. She was my rock in keeping me calm when the lightning flashed and thunder cracked. Even though she was similarly scared, Mom put on the brave face and was strong for me.

This is what I’ve taken with me into this life with MS. I imagine my friends and family are as scared of it as I am, maybe even more so. But I put on my brave face to keep them calm. I mean, I still am honest about its realities and the fears I have, but I leave them knowing that I’ve got this because I know they’re following my lead with this storm we’re facing together. 

Play to other people’s strengths

There are just certain things you talk about with certain people. I know that when Jennifer and I go out to dinner with our pastor after a church council meeting, Pastor Dana won’t have a clue what I’m talking about if I discuss whether to activate Tom Brady or Aaron Rodgers as my quarterback for fantasy football team. 

MS is no different. Sure, it consumes my life, but this doesn’t mean it’s something that should consume everybody else’s existence. 

And so, I know it does me no good to discuss my MS realities with someone who will judge me, give me unwanted advice or just make me feel like I’m being boring because I don't want to sit out in the 90-degree sun at a baseball game. There are other topics, such as fantasy football, bingeworthy TV shows, and landscaping around our home I can and want to share with these people I continue to consider my friends and family. 

This is why I’ve built a network of friends and family who will give me the support I need to confidently move forward with this disease. It’s like I’m the captain of my team, and I can determine who is and isn’t in my starting lineup. It’s how I control what I can about MS and ignore the things that are out of my control or keep me from staying in the game. 

Reframe how you think about the disease 

There’s an empowering adage out there many people use to stay ahead of life with this disease: “I have MS. MS does not have me.”

I celebrate this because it definitely works in not giving the disease more control than it deserves. However, I’ve taken this even further to minimize the role MS actively plays in my life: “I. Own. MS. The end.”

OK, there are ways I am at the mercy of MS, like when I no longer can type because my hands are too numb from typing the past two hours, have to rest before I climb a flight of five steps because MS has weakened my legs, or I stop drinking coffee while we’re traveling because the closest restroom along the interstate is still 30 minutes away. 

But did you see how I reframed my actions? I was the one who chose to stop in each of these situations. Sure, MS was at the root for why I stopped, but it was my decision. I didn’t allow it or my pride to push me to do more than I should. Yes, I still am learning my limits, but this way of thinking about the disease has given me the confidence in how I approach MS in the relationships I have with my family and friends. 

And those who take the time to understand and respect this are the ones I surround myself with most often because I know bringing my brave face to our MS-related conversations is optional (and not required).