Health

I'm A Mom With An Autoimmune Disease. There Are No 'Normal Days.'

You can make meticulous to-do lists, but you’ll always need to be ready to pivot.

What is like to be a mom with an autoimmune disease
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For so many moms, there’s always a pervasive feeling of not doing enough, not being enough. It’s an insidious shame perpetuated by a patriarchal society, curated social media accounts, and perfectly executed Pinterest posts. We’re constantly fed lies about what motherhood should look and feel like.

Now, what if, on top of this heavy burden of the role you play as a mom, you are carrying an invisible load, a disease that makes even the mundane motherhood tasks feel daunting? Being a mom with an autoimmune disease is like running a race backward.

There are no “normal days” for a mom with an autoimmune disease. You can make a meticulous to-do list the night before, but there is no control. You must be ready to pivot when you wake up and realize you have a flare up.

Maybe your joints are stiff with your hands and feet hurting, or your bowels have decided that today calls for IBS and you can’t be far from the bathroom, or your adrenals are messing with your equilibrium and your balance is off, leaving you clumsy and dizzy all day.

The hope you had of taking your child to the park or the climbing gym quickly disappears, and you must again tell your excited child that today just isn’t going to work out. You see the joy dim from their eyes and the resentment surface as they shout, “I hate your autoimmune disease!” You squash the tears forming in your eyes and swallow the lump in your throat. You remind your child for the umpteenth time that this is not a choice nor something you have control over, but they’re too little to comprehend this abstract notion. The shame and guilt quickly follow.

This is not the mom you wanted to be.

The mom that constantly disappoints their child.

The mom whom is canceling plans and rescheduling commitments.

You wanted to be the fun mom.

The mom always ready for adventure.

As your shame continues to spiral, you fight the voices in your head. The familiar voices sound like all the people that have ever gaslighted your disease. “You’re not pushing yourself hard enough!” “Have you tried a celery juice cleanse?” “I have an autoimmune disease and I don’t let it hold me back!” “Are you sure this isn’t all in your head?” “You don’t look sick to me?” “When I was a mom with young kids, I didn’t get to have ‘sick days’!”

Occasionally the voices win. You’ll try to “tough it out,” but you always regret it. What started as a bad day or two quickly becomes a week- or month-long flare up, all from trying to ignore what your body is telling you it needs.

With time you learn to be kind and patient with yourself. You get better at detecting the warning signs of a flare up and preemptively slow down and do what’s necessary to care for yourself. You learn to prioritize your mental, emotional, and physical health by finding those things that fill up your depleted reserves.

For your physical health, you find a gym with childcare and you go on an autoimmune diet to eliminate inflammatory foods. For your mental health, you find a therapist who understands motherhood and autoimmune struggles. And for your emotional health, you prioritize bi-weekly dinners out with your girlfriends.

From time to time, the guilt and shame will try to resurface, but you no longer let them get the best of you. You silence their unwanted voices. Guilt no longer overwhelms you when you choose to rest. Shame no longer twists how you see yourself as a mom. Your autoimmune disease was an unchosen life partner but one you’ve learned to adapt with and accept.

As the years progress, your child will become more compassionate and understanding. They no longer hate your autoimmune disease but understand the impact it has and the toll it takes on your body.

Because of your disease, your child has learned that we all have struggles, many of which are invisible. They now carry in their hearts compassion and softness that many adults have yet to learn. Because of your disease, your child has witnessed your heroic battle to accept yourself fully for who you are, struggles and all. What greater mom lesson could you teach?

Maria Confer lives in Birmingham, Michigan where she is a homeschooling, transracial adoptive mom. Maria is passionate about diversity, inclusivity, sewing, and cozy mysteries.