Crohn’s and Colitis Awareness Week lasts from December 1st to December 7th. Here at O.school, we’re talking about how living with a chronic illness can affect the many roles we have in our lives.
Living with Crohn’s has never been easy. After being diagnosed with the disease at 17 years old, I’ve spent more than 10 years dealing with the ups and downs: stomach pain, nausea, fatigue, dehydration, infused medications, and a surgery on my small intestine that kept me in the hospital for days and took weeks to heal afterwards. Becoming a new mom to my now one-month old daughter, however, has challenged me in unprecedented ways, both mentally and physically.
Now that my daughter is here and I can watch her smile break out across her face as she recognizes me, I’m completely devoted. All of my needs come second to hers. Between breastfeeding, pumping, swaddling, and soothing, I hardly have enough time to shower or soak in a bath — let alone give my partner the attention and time that he needs, too.
Enter: the balancing act. As busy as we both are between our jobs and our newborn, we are committed, still, to making some time for one another on at least one night a month. We write love letters, reminding one another of how we got to be here in this moment with this small, growing family. We venture out to our local sushi restaurant, baby in tow, to celebrate the day we started our romance all those years ago. We settle down at night with a glass of red wine and Watchmen, baby in bassinet by our sides, to make sure we are still enjoying the things we’d do before our daughter arrived.
Our life together is different now with our plus one. When you have Crohn’s, you often feel like you have less energy than the average person because the disease’s symptoms can leave you quite literally drained. And now, with a newborn, these symptoms and side effects intensify from lack of sleep, added stress and cortisol levels, and the inability to properly partake in self care because I’m attending to my baby’s needs. It can feel like there isn’t enough time in the day to exercise Daisy, wash milk bottles, feed our daughter, and hold her upright long enough so she won’t spit up.
Of course, there are times when frustrations run high in my marriage.
Times when we feel like we both haven’t slept, when our newborn cries, inconsolable, and there is seemingly nothing that either of us can do to make her feel better. These stressful moments can leave us both on edge and more irritable. We’ve had to learn to be extra patient and make room for the other as we both express our new feelings.
But it’s also true that our love for one another has reached new depths we’d have never known without our daughter.
When my partner holds our baby and reads Brown Bear to her, or sings a funny song he’s made up to soothe her, I feel this rush of emotion and a lump in my throat and the thought that I’ve never loved him more.
My partner has been there for me since the beginning, when Crohn’s symptoms left me fatigued and bedridden, when I was in and out of the hospital for days after a Crohn’s surgery. Now, during these late nights when our daughter needs us, he lets me sleep a little longer. He picks up more than enough of the slack when baby bottles are stacked in the sink and laundry needs folding. When I can’t get to these household duties fast enough because of stomach pain or fatigue, he has been there to help ensure our routines still run as smoothly as they can with a newborn.
As much as you might anticipate the arrival of a small one, there are, undoubtedly, curveballs thrown your way. Everyone says: you won’t sleep, you won’t have time to do anything. I always thought these were slight exaggerations, but we’ve found them to be pretty true in these first few months of parenthood. For now, we’ve both quit our gyms and exercise routines —ways we used to stay healthy and relieve stress. For someone with Crohn’s, an exercise routine can be really important because it can help keep symptoms at bay, but with the arrival of our daughter, I can’t prioritize taking care of myself — even with my partner’s help.
I consider myself lucky, having the privilege to work from home while my partner can sometimes work remotely, too. I realize this is a luxury that not all parents or people living with health issues are afforded. Even still, we somehow feel like there aren’t enough hours in the day to handle everyone’s basic needs. We are still challenged by juggling our daughter’s feedings, my breast pumping, our work, and our high energy dog. Yet I ultimately feel that our bond is becoming stronger than ever as we make it through each tiresome day together. My partner has already stood beside me through the tumultuous years of living with Crohn’s, and now he continues to support me as I figure out being a new mom.
He is trying new diets with me to relieve my Crohn’s symptoms (avoiding meat and dairy). He is taking time off work to care for our daughter when I need to go to my many doctor’ appointments or have a colonoscopy. He continues to give me my bi-weekly Crohn’s medication via injection because I’ve always been too scared of needles to do it myself. It’s only been one week since I’ve been medically cleared for intimacy after childbirth, but he’s patient and understanding of my needing time to heal, too.
Still, even with his support, having a baby and having a chronic illness can leave me feeling completely drained and depleted.
There have been times when my partner isn’t home, when I’ve had to put my crying baby in the bassinet and run to the bathroom because of my Crohn’s symptoms. It’s a heartbreaking and debilitating feeling — knowing that I can’t feel better for my daughter. I often feel guilty, like I’m not doing enough even though I am doing all I physically can to give my daughter what she needs.
But when my partner is home, and I am feeding our daughter in one arm with one hand and typing on a laptop for work with the other, he asks: Can I get you any tea or water? What do you need? During the night when she has finally settled, he offers to rub my back, working out the tight knots that have buried themselves in my shoulders. I find comfort in knowing I can lean on him for support, passing baby off to him when my symptoms flare sharply. And on some bad days, he is really taking care of both me and our daughter, warming her milk and simultaneously putting soup on the stovetop for me.
Adjusting to the first few months of parenthood has been hard, but I know that as time goes on, we will only get better at adapting. I may feel held back at times due to the physical challenges Crohn’s can bring, but I know this is part of living with the disease. And I know that, together, we can do this — and grow stronger through it.