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Motherhood and MS

By Moyna John
May 8, 2022

It’s the late fall of 2020, and I’m experiencing a flare. I have lost my mobility, and I am bedridden. My son came into the bedroom with a big smile. He jumps on the bed and pulls my arm, motioning me to get out of bed. He has a puzzled look when I do not move. I whisper to him, holding back tears, “Mommy can’t play right now, Micah. Go find daddy.” He pulls my arm a few more times before giving up. As he left the room, I could see how sad he was. I’m his playmate, why won’t I play with him? He is too young to understand what is going on. I watched him leave the room and silently cried tears of guilt. What kind of mother am I? 

After being diagnosed with multiple sclerosis (MS), the guilt I felt was tremendous. I feared my son would live his life to take care of me. I thought that I had failed as a parent. Time helped me gain perspective. I now understand I have not failed as a parent. I have a chronic illness, and that is okay. I am learning how to manage my condition and have found some pointers to make motherhood a little easier. 

  1. Listen to your body. I understand the urge to be supermom and do it all. That was me all the time. I was taking everything on without asking for help. Despite feeling out of it, I would push through. Frankly, that is the worst thing. If one of your consistent symptoms is fatigue like me, pushing past the point of exhaustion only makes the next day worse. Pace yourself, listen to your body and stop when needed. Whatever is leftover can be done tomorrow. 
  2. Accept help. Adding on to number one, asking and accepting help can take some of the burdens off of you. My family takes my son for the weekend regularly. That offers time to relax and do some self-care. There is nothing wrong with asking for help when it is needed. This does not make you weak or a bad mom. These are feelings I had to process through before I could openly ask for assistance. 
  3. Write down the important stuff. I can barely remember my name between brain fog, being in my 30s and general adulting. I make sure to write everything down. I use the calendar app on my phone to send reminders. Plus, I put handwritten notes on my fridge for important dates at my son’s school. Also, I log what products have finished for my shopping list. This makes it easier when it’s time to order my groceries. It’s unrealistic to believe you can remember it all. 
  4. Remain positive. Trust me, I understand; it is hard to be positive when you have a lifelong chronic illness. Some days it feels like there is no reason to be happy. Keeping a perspective of all the good in your life can help maintain a positive outlook. Accept the bad days because they will come. But understand bad days do not equal a bad life. We can still enjoy life with MS. 
  5. Self-care is a MUST. I cannot say it enough; you can’t pour from an empty cup. Once I had my son, he was my only focus. It was so bad I believe at one point I did not have a cup. I completely lost who I was, and my identity was being a mom. Self-care is not selfish. It is essential to take time to do something for yourself. Whether that be reading a book, watching your favorite show, taking a long bath, whatever helps you relax. You are no use to your child or yourself if you are burning the candle from both ends. Remember, you are doing your best. You are a great mom, MS and all! 

Editor’s Note: Find resources on parenting and MS on the Society website.

Moyna John

Moyna, diagnosed in December 2019, resides in NYC. She is focused on adding people of color representation within the MS community. When Moyna is not promoting advocacy, she is parenting her three-year-old son. You can follow her journey on Instagram and on her website.

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