I have Crohn’s disease. It’s an irritable bowel disease. It’s categorized as an invisible disease. But I feel its presence every single day, for both the good and bad.
My Crohn’s disease affects my guts and a lot of other parts of my body, too. Like my lungs and kidneys. And my mind and spirit. I’ve had it for almost 20 years. I’ve had countless surgeries and many hospitalizations related to Crohn’s. I also have what I deemed a “tag-along” disease, called bronchiectasis. It affects my lungs and their ability to successfully cough up the junk.
I rarely let my diseases define me, but they oftentimes can be a rather unpredictable part of who I am. I know that I’m not the only mother balancing the lives of little ones while managing chronic diseases. I thought I could share some of my insight in hopes of helping other moms. Or mom friends.
When I’m feeling healthy and good, I may be the mom that you see chasing her kids around the park. I may be the mom you see carrying her “too big to be carried” 5-year-old boy. I happily embrace my boys who fight over my personal space i.e. who gets to sit next to me, hold my hand, etc. I may even be the mom you get annoyed with, for some reason. I’ve read blog posts about how some mothers dislike or resent moms that play with their kids. The truth is that I care more about this time with my kids than what an onlooker perceives. When a disease unexpectedly robs some of your precious days and moments away from you, you retaliate by living out the good days in a pretty epic way. Or that’s how I tend to show the disease whose boss sometimes. It’s not an every moment, every day phenomenon but you truly do learn to experience, cherish and cling to the times when you can fully engage with your children.
When I’m feeling crappy and flared up, I have to conserve my energy. Sadly, I may unexpectedly cancel on friend dates, play dates, and any activity that may take some of my already depleted stash of energy away from my kids and husband. Disease fatigue strikes. I hate slowing down, saying “no” and not supporting friends but I have to take care of myself, especially when I’m not doing well. I’ve compared my active disease behavior to that of a toddler. I can be unpredictable, moody, even distant at times, then back in your face, “Hey! Remember me?”
Just like you would not take personally the sporadic behavior of a toddler, please don’t be offended by my flared-up disease behavior for the moment. Or for days.
A lot of my good friends reach out and want to help when they know I’m not feeling like myself. This means the world. Since my disease limits my diet to next to nothing, bringing food over can sometimes seem insensitive. It’s not. My boys and husband still eat, even when I am don’t. I also love getting texts, phone calls, or any form of communication. I just may not have the energy to immediately text or call back. I like when friends don’t ask me what they can do, but say things like,
“I’m coming over, you don’t have to do anything. I’m bringing my best folding hands to help with your laundry.”
“I’ll change your hummingbird juice because I know you love the hummingbirds.”
“I will pull weeds for you.”
“I will bring a movie over and watch it with you. You don’t have to talk to me.”
“I will take your ripple glass for you.” (Although ripple glass therapy is one of my favorite therapeutic activities.)
“I will walk your kids home from school.”
“I brought you flowers. Bone broth. Cookies. They’re on your front porch.”
I truly appreciate any thoughtful gesture that makes my eventual to-do list a bit shorter. Family and friends sometimes offer to help by taking my kids. If I’m in a lot of pain, this is a non-negotiable. If I’m doing OK, I get lonely and miss them if they’re gone too much. I crave the time with my kids because their encouraging, compassionate spirits motivate me to feel better. They help snuggle with me, bring me water, and with their awesome dad’s help, they have learned how to help care for me.
Despite the often unpredictable pain and frustration we experience, the beautiful and grateful moments always float to the top. If you have a mom friend with a chronic illness, reaching out to her from tome means the world to her. Please let her reciprocate your thoughtfulness and love by letting her help you out sometime, too.