How RA Changed My Expectations of Parenthood
Before I was a mother, I dreamed about all of the things that I would do with my children.
From thoughts of carrying them on my hip through stores, chasing after them on the front lawn, playing games on the floor, or holding them upside down, I always imagined I’d be an active mother.
What I didn’t think about was how rheumatoid arthritis was going to change the reality of the type of mom I’d be, and how I’d need to adjust my expectations of parenthood accordingly.
I've always dreamed about being a mother
Although I have struggled with joint pain and symptoms of RA since about that time too, I wasn’t officially diagnosed until shortly after I turned 30. It was both a relief and a rude awakening to see that formal diagnosis in print, and I spent the early days naively assuming that medication would bring my RA into remission.
Over the 5 years since then, my inflammatory markers have decreased and remained stable, but there are weeks and even months that I experience routine pain, swelling, and stiffness due to rheumatoid arthritis.
Those symptoms impact every aspect of my life - movement, appetite, sleep, work, and parenthood.
RA made daily activities nearly impossible
When my daughter was born, she weighed just over 5 pounds, and she was the tiniest little peanut. Carrying her was effortless, but infants come with a whole bunch of other stuff. And, breastfeeding means moving into new, unfamiliar positions for long periods of time.
Within a few months of her arrival, I was struggling from sitting cross-legged on the couch, schlepping a diaper bag full of items, and standing to rock her back to sleep. My joints constantly ached, requiring me to massage them, use topical and oral pain medications, heat and ice, and physical therapy. Things that were less than ideal for a new mom to need to manage.
Facing new RA challenges as a parent
As my daughter has grown, so have my RA challenges. RA has impacted the ways that I am available to her. We’ve cultivated a perfect playroom for her over the last year, full of gross and fine motor skill activities, sensory input, and creative play, but there are no chairs, couches, benches, or stools in the room so, I sit on the floor beside her. Recently, I’ve noticed how much harder it has been for me to get up and down, on and off the floor. I experience shooting pain in my knees, hips and ankles. My back aches in so many places and my wrists and fingers often feel like they’re on fire every time I rely on them to hoist me back up again.
Learning when to say "no"
It’s not just engaging in her playroom that feels different than I imagined. When we run errands, my nearly 35lb child sometimes wants to be carried and that's a lot of weight for this RA mama to be shouldering with just one arm. When we play outside, whether she's kicking a ball or drawing with chalk or playing hopscotch, she wants mama right beside her. Many of those things are difficult or near impossible for me to manage while living with RA. Sometimes I do these things beside my daughter to give her the moments I so desperately want us both to experience, but you better believe I pay the price for a long time afterward.
Navigating when to say no, and when to try, when to modify and when to revise - it's become a lot bigger part of motherhood than I ever imagined. I'm grateful for the mobility and stability I still have, but I'd be lying if I said that parenthood with RA has gone according to my original plans.
On average, how many times per month do you (or your caretaker) go to the pharmacy?
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