Saying yes to talking openly about MS

Jonathan M.

Jonathan is a single, working dad with MS. He’s happy to share his experiences and offer tips for living with MS while raising his 7-year-old son.

As a single, working dad to an active 7-year-old, I’ve learned how to adapt to some pretty tough challenges. Still, it can be hard for me to talk about my relapsing multiple sclerosis (MS) in a way that my son Nicholas can understand. I’m sometimes hesitant to tell him, or anyone, how I’m feeling because I don’t want my MS to get in the way or make them feel uneasy about approaching me with an activity.

I’ve learned that with some small changes to our routine, advanced planning and open communication, I’m able to say yes to finding the right balance between taking care of Nicholas and myself.

Show and tell

When it comes to communicating about my relapsing MS, it’s not always easy to share how I’m doing—both physically and emotionally. That’s why Nicholas and I have a system to show our feelings, using emoji magnets on our fridge. When I come home from work, I put up a magnet that expresses my mood—whether it’s happy, tired, stressed or excited. When Nicholas gets home from school, he can see how I feel and do the same.

He has so much fun using the magnets, and it helps him to recognize when I might need some quiet time to rest or extra support around the house.

Changing my mindset

Since my diagnosis, I’ve viewed my relapsing MS as a burden that I don’t want to place on the important people in my life—especially my son. It can be a challenge to talk about how I’m feeling and how the symptoms affect me, specifically with those who are not as familiar with the disease, whether that be Nicholas or a friend.

One strategy that I’ve learned is to change my perspective. When I think about who I am as a person, my MS is just a small part of me, and it’s not something that should define or limit me. When I approach a new situation with this mindset, it helps me to feel empowered and more at ease when discussing my MS with others. If I’m feeling fatigued or worn down—it’s okay to be honest about it, because it allows me to modify my plans accordingly and look to my family and friends for help when I need it.

Saying yes to self-care

When you’re a single parent, there’s never a dull moment. And while I love spending time with Nicholas, there isn’t always a lot of time to catch up with friends and maintain my own social life. However, with a little creative multitasking, I’ve been able to make it work.

Something I’ve learned is that “me time” doesn’t have to be separated from my daily responsibilities. I’ve started taking advantage of the time Nicholas is at swim lessons, and using it as an opportunity to socialize with the other parents, or even meet up with a friend or a date for coffee. This way, Nicholas can do the activities he loves, and I can still have time for myself.

During my journey with relapsing MS, I’ve learned that Nicholas—along with my friends and family—is an important part of my support team. When we talk openly with each other and work together to make small but impactful changes in our everyday routine, I’m able to say yes to finding the right balance for me.

Jonathan M. is a paid spokesperson for Biogen and has experience taking Tecfidera® (dimethyl fumarate). He may or may not be currently on TECFIDERA.

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