No One Tells You About the Guilt You’ll Experience as a Mom with a Chronic Illness

Steve Lieman on Unsplash

We hear it all the time. Moms are superheroes! If you need to get something done, ask a mom! Moms have a well-deserved reputation for multitasking and powering through, but what about disabled or chronically ill moms who can’t power through? Are they any less deserving of accolades? Is it possible that the narrative around moms “powering through” isn’t really helpful to anyone?

A few years ago, I began to experience mysterious symptoms that went on for several months and made me feel as though I was rapidly aging at thirty-six. I was suffering from constant fatigue, joint pain, and an achy all-over feeling like I was coming down with the flu. After visiting a few doctors and specialists, I was eventually diagnosed with Rheumatoid Arthritis, an autoimmune disease in which the body’s immune system mistakenly attacks its own tissues and joints.

Since then, my life has changed dramatically. Dealing with a chronic illness often feels like a full-time job; one that takes time and energy away from my family. So far, through my health journey, I have not been able to stop or slow the progression of my disease through conventional or holistic treatments. The medications often used to treat RA are immunosuppressants that carry a long list of daunting warnings. I have failed four so far due to allergic reactions and frequent infections. I live with chronic pain and fatigue, and my fingers and toes are already showing signs of permanent damage and deformity. Surgeries and disabilities are likely in my future.

However, what I’m struggling with the most is the feeling of loss over not being able to be the mom I was before my diagnosis. I used to be a mom who loved to hike and be active. Now, I am a mom who has to rest a lot. I’m a mom of three active sons who has a hard time even shooting a basketball without pain while playing with them. I’m a mom who lives with an “invisible” illness limiting my mobility and hijacking my energy.

This is what no one tells you about living with a chronic illness or disability. No one tells you about the guilt you’ll experience over not being able to do all that you wish you could for your kids. Even if you can power through some days, there will also be many times when physical limitations will get the best of you, even if you may look “normal” to others.

It has been difficult for my kids to understand at times. This new normal means that I am not the same mom I was before. My entire family is grieving the loss of the person I was in different ways. However, seeing me in this more vulnerable state has unleashed a deeper empathy and maturity within my sons that is beautiful and that I believe will serve them throughout their lives. They notice when I need help with opening jars and will bring me my cane when I’m having trouble walking. They hug me more often and tease me that I should become a meteorologist because my arthritis always tells me when a storm is coming.

They are why I am choosing to focus on the things I can do. I can have a chronic illness and still be a good mom. I can be an advocate for other mothers with chronic illnesses and disabilities. I can teach my kids the importance of self-care by modeling it myself. I can be adaptable, savoring the good days and accepting that I have to lower my expectations of what I can accomplish when I have a bad flare.

My health journey has taught me what is really important, and it makes me wonder if it may be time to change the narrative of the superhero mom. Moms are, after all, humans. We make mistakes and feel overwhelmed at times, just like everyone else, whether we are healthy or not. We don’t always need to power through. Sometimes, what takes the most courage is setting healthy boundaries and allowing ourselves to rest. What moms really need is the loving encouragement we bestow upon our children. We need to know that even if we can’t do it all, our contributions still matter.

I'm a freelance writer and mom to three boys. I'm passionate about the outdoors, dogs, and taking lots of epsom salt baths! You can find my work on Huffpost, PopSugar, Mommy Nearest, SingleCare, Sheknows, Let Grow, and others. 


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