Being a sick mom presents unique challenges. For many mothers, illness might mean a temporary disruption – a pile of laundry, a few nights of easy dinners. But for moms with chronic conditions, it’s a constant balancing act, a different kind of dance. We become masters of adaptation, creativity, and mom hacks – relying on grocery delivery, kid-friendly snacks, and yes, cereal dinners become more frequent. Yet, beyond the physical hurdles, the mental and emotional struggles can be even greater. Mom guilt, already a familiar companion for healthy mothers, can become overwhelming when you’re chronically ill.
So, how can you navigate motherhood while sick and still be the mom your children need? How do you release the persistent mom guilt, accept your limitations, and find contentment in the mother you ARE, even if she differs from the idealized version you once envisioned? How can you support your children as they cope with your chronic illness when you’re struggling yourself?
These are the questions I’ve grappled with over years of managing autoimmune disease and POTS (Postural Orthostatic Tachycardia Syndrome), often spending extended periods at home, even bedridden. I’ve learned to “Dance Mommy Dance Mommy” from bed, figuratively speaking, navigating motherhood in less-than-ideal circumstances. While it’s not the parenting journey I imagined, it’s my current reality, and I’ve discovered valuable lessons along the way.
Over these past years, I’ve learned numerous lessons – far too many to share in one article. But here are five crucial tips that have been my guiding steps in this challenging dance of motherhood while sick.
1. Embrace the Basics: Simplifying Motherhood When You’re Ill
As someone who naturally leans towards big dreams and perfectionism, transitioning to “basic” motherhood has been a significant shift. I used to strive for the Pinterest-perfect ideal, but chronic illness has drastically reshaped my priorities. Many things I once deemed essential have faded in importance. Now, I focus on what truly matters. Instead of perfectly coordinated outfits and hairstyles, my priorities are semi-clean clothes and whether baths happened this week. (My son practically lived in pajamas last summer, but in the grand scheme of things, does it really matter?) My children are clothed, fed, and loved. Sometimes, that’s all we can manage – and that is perfectly okay. This is part of the “dance mommy dance mommy” – adapting your steps to your current capabilities.
A young child with braids hugs a woman sitting in bed with a laptop on her lap.
2. Redefining the “Perfect Mom”: It’s About Connection, Not Perfection
There’s no single blueprint for the “perfect mom.” We each have unique strengths, limitations, circumstances, and children. What works for one family or child may not suit another – making comparisons pointless. Whether healthy or sick, we all have limits. While I continually strive to improve as a mother, accepting my limitations and believing I am the right mother for my children has been crucial in easing mom guilt. I might miss performances or games, but I offer encouragement and love. I become their home-based cheerleader. I may not always be the mother I want to be, the “dance mommy dance mommy” of boundless energy, but I can always be the mom my kids need.
3. The Power of Listening: Being Present Even When Physically Limited
I have a unique perspective: being a chronically ill mom who grew up with one. My mother had Lupus and Sjogren’s disease. Fatigue was her constant companion. She worked, tried to cook dinners, and manage the house, but evenings and weekends were often spent in bed, recovering from overexertion. Disappointments arose when she missed events, but the times she was present meant so much more. Even more significant than attending events was her presence as a listener. Knowing her limited energy, the rare moments of her undivided attention to my joys and worries (amidst five siblings) were precious. This quiet presence is a vital part of the “dance mommy dance mommy” – engaging emotionally even when physical movement is restricted.
I might not take my kids to the zoo or help at school, and sometimes I need to withdraw due to pain. But there are times when I can offer my full attention. Even though listening can be draining, it’s profoundly meaningful. Whether it’s the latest Pokémon obsession or another “fascinating” topic, being present and listening makes them feel loved, respected, and valued. I can offer this vital connection from bed.
4. Unintentional Life Lessons: Growth Through Adversity
I’ve learned much from my chronic illness, though I wouldn’t choose this teaching method. My children are also learning valuable life lessons. They learn patience when I can’t help immediately. They develop self-sufficiency by doing things independently. They cultivate compassion by caring for me and each other. Knowing my children are growing in strength, empathy, and resilience offers a small comfort amidst the challenges of being a chronically ill mom. This unexpected growth is another step in the “dance mommy dance mommy” – finding positive rhythms within difficulty.
5. Empowerment for You and Your Children: Shifting from Helplessness to Agency
Chronic illness can be physically and mentally debilitating, fostering feelings of powerlessness. How can you care for your children when you struggle to care for yourself?
Although my health had been declining for years, a significant downturn two years ago confined me to bed for months. This new reality was a struggle for all of us. My children, feeling helpless, voiced their worries during our nightly “good news/bad news” tradition. “My good news is I love Mom. My bad news is I miss Mom.” I was physically present, but they missed the mom I had been – and so did I.
We all felt powerless. My children felt unable to help me, and I felt unable to help them or myself. We needed to regain a sense of empowerment, to show them my love remained constant despite the changes.
Inspiration struck one night, leading me to write a children’s book, “Mommy Can’t Dance.” It outlined how my children could help me – drawing pictures, bringing water – and what I could still do for them – reading stories, singing songs. Crucially, it emphasized that our love remained unchanged.
Being a chronically ill mother is a daily dance, a constant adjustment for me and my children. But it’s given me profound insight into parenthood and my children’s true needs. I can’t do everything I once envisioned, the energetic “dance mommy dance mommy” of my dreams, but I can continue to mother and love them in the best way I can – and I must believe that is enough.
Written by Katie Carone Click here for Katie’s blog: Mommy Can’t Dance, about a chronically ill mom seeking to help her kids and others while finding fulfillment and happiness when living and parenting from bed.
Click here to learn more about Katie’s books, “Mommy Can’t Dance” and Chronic Illness Daily Tracker, Symptom and Activity Journals.
