Mom Guilt with MS

I’ve heard about mom guilt long before I ever became a mother.

Whether a woman is a CEO of a business or her home, the unrealistic expectations to “do it all” leads to constant guilt. It’s something moms are finally speaking about. However, what are not included in these broader discussions are the struggles of navigating motherhood with MS.

Other moms don't always see my struggles

Nobody is talking about that at the Mommy and Me Playdates or at the bus stop. It’s not even seen by those closest to us. It’s yet another layer of invisible struggles living with this invisible disease.

For me, this is the one the cuts straight to my heart and is therefore the hardest.

My daughter is only a year old, so relatively speaking, I’m the new kid on the block here, but it doesn’t take long to feel the struggle. Fatigue is the biggest obstacle for me. And that doesn’t mix well with motherhood – especially in the newborn to toddler stage.

I don't want my daughter to miss out

I don’t want my daughter to miss out on any experiences in life – even if it’s just an afternoon at the playground or having her favorite book read to her – because of my life with MS. And I haven’t even gotten into the stage of motherhood with school pick up and drop off, and practices, recitals, and endless birthday parties. Moms of this stage, how do you do it? Please share in the comments below!

My “why” is to be an active mom to her. Being that I had her at 42 years old, age isn’t exactly on my side either to support me in being an active mom.

So how do I be the mother that I want to be, while still living with the realities of MS?

Choosing to be intentional with my energy

I don’t dare to think or suggest that there is a magic formula that will work and be applicable for every season of parenting and every season of MS, but are there some insider tips?

I’m on the road to find out!

To start, I’m choosing to be more intentional with the energy that I do have on a given day. I’ve always been the type of person that burns the candle at both ends, and then keeps going even after burnout. (I’ve since come to realize there are many of us in the MS community with this tendency.)

But since my diagnosis of relapsing remitting MS in 2016, I’ve learned the true cost of that lifestyle. The setback is far too costly. Now that I’m a mom, the setback is even more costly. That desire to complete my never-ending to-do list is still there, and as is that nagging voice in the back of my head to do “just this one last thing.” However, I started to ask myself if the activity is truly worth the cost.

Accepting what I can do

Some days that means I’m weighing out the cost of showering. Will that rob me of the energy I need to take my daughter to the park in the afternoon? If they answer is yes, I’m skipping the shower. I’d rather feel guilty about not showering than not pushing my daughter on a swing.

Other days, when I don’t have any energy to give, I have to accept the fact that going out is too much for me. So, I do my best to nip any guilt in the bud (admittedly easier said than done, but the intention is there) and make the best of our time together at home. I focus on being fully present with her when playing on the floor. Ironically, it ends up being better quality time than if I had more energy and tried to multitask during her playtime.

Having to ration energy is hard

If I’m being honest, I hate the idea of having to ration energy. Sometimes I think, why can’t I just be normal? But the reality is, my over-achiever lifestyle prior to my diagnosis wasn’t healthy or sustainable – MS or not. And if there’s anything that I want to model for my daughter, it’s self care and healthy habits that she can learn for her health, too.

I’m curious, what helps you to navigate mom guilt while living with MS? Share in the comments below so we can learn from you, too! And just a disclaimer, I share this from a mother’s perspective because that’s my experience, but I know we have some fathers here in this community who are dealing with father guilt. We’d love to hear from you, too!