Angie Ebba and family parenting with chronic illness

When I was younger and would think about myself as a mother someday, I’d imagine myself as the “fun mom” on my hands and knees playing with the kids, as the “involved mom” volunteering in the classroom and taking cupcakes to parent teacher association meetings, as the “friends’ mom” with a house full of teenagers hanging out and being loud as I supply snacks periodically. I never pictured myself as the “sick mom.”

Yet this is what life had in store for me. In the early years of my children’s lives, I was very active and involved, just as I had imagined when I was younger. However, as they entered elementary school and I became sick, my ideas of what it meant to be a mom had to shift.

At first, I struggled. I wondered if I was still a good mom, even if I was stuck in bed a good portion of the time, didn’t have the stamina to always play with my kids the way they wanted, and had to turn to frozen meals instead of cooking from scratch. I had to confront and unravel a lot of internalized ableism, along with deeply ingrained notions about what it means to be a mother.

When I began to unpack these ideas, I realized there are many ways of being a parent — and being a “sick mom” made me a wonderful mom. In addition to the many obstacles of being a chronically ill parent, there are valuable lessons I’ve been able to apply to motherhood.

Let’s look at a few.

Be Flexible

Chronic illness is unpredictable, and you must learn to adapt and be flexible and patient with yourself. You never quite know what to expect. I may wake up one day feeling great and able to do the activities I want, or I may wake up with a myriad of new symptoms and need to cancel plans. I may be in a great mood one week, and then irritable and cranky the next day due to a high amount of pain or a dose of steroids.

Similarly, life with kids can be unpredictable. Young children may throw temper tantrums, while teens have mood swings. Plans can change in an instant, favorite foods can suddenly become the least liked, and boundaries may be tested as children grow into their own identities.

Patience can be hard as a parent, especially when you’re in pain or dealing with other health symptoms. But I’ve found that chronic illness has made me more patient and flexible with my kids.

I can now see the ways that I am human, fallible, and in need of compassion and understanding, and in turn, I am better able to appreciate those qualities in my children. Chronic illness has taught me to see the beautiful, sometimes messy, unpredictable yet lovely, humanity in people, including my children.

Slow Down

Another lesson chronic illness has taught me is to slow down. Doctors often tell us to “pace” ourselves or to be mindful of our activity levels, so we don’t overdo. We must learn to balance activity with rest, often functioning at a pace that may be slower than our able-bodied peers.

When my children were young, before I was sick, we were constantly on the go. There were school activities, after-school programs, spring break camps, summer excursions, weekend trips to the beach, themed dinners at home. If there was a free minute, I felt like I had to fill it with something engaging, entertaining, or educational.

After becoming ill, I realized the importance of rest and downtime — not just for myself but for my kids. Now, instead of a calendar full of activities, I’ll schedule a few things and make sure to leave plenty of time to relax with the family or by themselves. Physical and mental rest are so important to our well-being, and I’m grateful that chronic illness has taught me this lesson, which I can pass onto my children as well.

Cherish Each Moment

Finally, chronic illness has taught me to cherish each moment. There is something about being ill that makes you recognize (and appreciated) the fragility of life. Prior to being ill I was rushing through life. Slowing down has forced me to see the beauty in the small moments — like watching a movie with my teen, them curling up next to me while I lay in bed, laughing together at quirky comments and funny antics.

Because of my body’s limitations, I am now blessed with the opportunity to see my life — and my experience as a mother — in new ways. While I never anticipated being the “sick mom,” I can be grateful for all the things it has taught me. I feel like my life and parenting journey are fuller because of my chronic illness.

Be a More Proactive Patient with PatientSpot

PatientSpot (formerly ArthritisPower) is a patient-led, patient-centered research registry for people living with chronic conditions. You can participate in voluntary research studies about your health conditions and use the app to track your symptoms, disease activity, and medications — and share with your doctor. Learn more and sign up here.

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