The Mental Load Of Parenting with a Chronic Illness 

Before my feet hit the floor each morning, I take stock of each ache and pain, where it’s located, if I can move right away, or if I’ll have to play the waiting game to get out of bed. Simultaneously, I’m also thinking about what medications I’ll need to take, which clothes I need to pick out for my son for the day, whether lunch still needs to be made, if I have an easy dinner option that can be thrown together in between drop off and pick up, and the list never stops.   

Sometimes the mental load is heavy. The list of reminders starts ticking away, the sound giving way to one of anxiety rather than one of peace. That’s why I’m writing this. I’m hoping to bring awareness and to show some examples of different ways that I am learning to manage the sometimes-heavy weight of mental Stress. 

The Invisible Work No One Sees  

Parenting with a chronic illness is a two-fold issue. On the one hand, you are responsible for your child’s wants and needs, and on the other hand, you are responsible for your own health, including your symptoms, appointments, medications, energy levels, etc. Those things don’t always mesh well!    

Every week, there are at least two to three days when I am struggling through some part of the day. Most often, it’s getting my son ready for school. Some days, my head hurts so bad it’s hard to think. My brain feels full of cloudy sludge, and then an excited 5-year-old is added, and it’s a wonder we even get out the door. It’s so HARD! Putting an excited child in a car seat, trying to stuff small unwilling feet into socks and shoes and trying to separate a child and their fun stimulating toys for you to start your day is difficult enough, but when you add in having to make phone calls about your prescriptions, remembering /finding time to take your medications, and adding answering incoming phone calls from your doctor into the mix and it gets crazy!. It’s chaotic, and it’s the behind-the-scenes work that goes unseen and unnoticed.    

The Emotional Weight 

I love being a mom. Well, I MOSTLY love being a mom. There are small things, like touching my face and pulling on my clothes, that I absolutely do not like at all! But I digress. Although I love it, I often wonder if I’m the only one who has guilt eating away at me because I don’t feel like a “normal” parent. I spend half the day running around gathering my son’s stuff up for school, getting him dressed, and making sure he’s ok. The other half is spent feeling this immense guilt. Sometimes I’m doing all of it without the energy or excitement that I see in other parents, because I’m fatigued, I’m in pain, and I’m ill.  

I can and do realize that sometimes these feelings are just mine. My son doesn’t recognize what’s going on half of the time. He’s just happy to have me around.  Most of it is just me having these big, huge feelings about these health conditions that have changed my life in ways I never imagined. But when he notices…….Boy, can it hurt!  

A few days ago, my son asked me to grab his farmhouse down from his shelf in his closet. I was dealing with a sudden onset migraine and couldn’t get it out in that moment. We had to have an impromptu “movie day with mommy” in my bed. As he lay with me, he leaned over, kissed me on the forehead, and said, “I’m sorry you’re not a normal mommy”. The “I love you” was implied in the hug, I think. I wanted to cry. He said it in the Sweetest little voice, and he meant it the kindest way, but it hurt at the same time. The interaction taught me two things. The first is that by using that word in passing, I had unintentionally sprinkled some of my emotional anxieties where they didn’t belong (because there is only one way my son would have heard the word “normal” in that context, and it was from me). I first became obsessed with the word ‘normal’ because I saw it so rarely in test results. Even now, years later, I can remember the almost frantic overwhelm I felt when I would go over test results with my mom and obsess with her over what they meant while I sobbed. Those old feelings brought me to my second lesson: I need to take the word “normal” out of my vocabulary. I realized that I have been trying to define not only my health journey but my motherhood and myself by using that word as a metric. So, from now on, I’ll use words like Authentic, Whole, Resilient, Gutsy, and everything in between to describe my journey. Changing that is the first step to changing everything!   

I really don’t think that being “normal” was in the cards for any of us anyway. We might as well be our most authentic selves while we’re out here chronically living! 

How I’m Learning to Cope 

Over the last few years, I found a few small ways to manage the mental load, which has also helped me with the physical side of things. Here are a few small ways that I manage: 

I write things down: 

•  This can be tough when I’m struggling with painful hands, but for some reason, it works better for me than using my notes app on my phone (probably because I have anxiety that my phone will crash). Use whatever works best for you! The most important part is to write down what needs to get done. Write down who needs to be where, what chores need to be done, and when, etc. It could be a game-changer.   

•  I also journal now and again, which helps to keep me emotionally regulated and can help with my stress levels. When I journal, I write down EVERYTHING that has happened and everything that is on my mind. If you get it all out, I have found that it’s easier to rest and get some sleep at the end of the night.  

Use a pill sorter/electronic pill reminder 

• I have a pill sorter for my meds and have used an app to remind myself to take my medications. Sometimes, though, I use my phone and set an alarm if I get too lazy. Do SOMETHING so that you are making sure to take care of yourself and take the meds you need to take. I know it’s easy to let your health fall to the back burner, but make yourself a priority too! 

I keep myself on a schedule:  

• I know, I know, being an adult is supposed to be all “stay up late and eat whatever you want, fun, right? Not for me! I realized that if I wanted to stay healthy, mentally and physically, I needed to keep to a steadier schedule. I have a whole bedtime routine after I put my son to bed that allows me to feel mentally and physically at peace almost every night.    

Let go of trying to be perfect:  

• Not everything will go to plan every day. I have to roll with the punches, but slowly, I have learned how to find the beauty in that. 

 

 

Remember, every day when you wake up and keep trying, when you keep doing your best, even though your body is tired and your to-do list is long, it’s proof enough how strong you truly are.