I recently came across the following quote, “It doesn’t get easier. You get stronger.” Those words made me pause and reflect on my personal patient journey and also think about how I give advice to those in the inflammatory bowel disease community. While I believe the diagnosis and the initial flare-up that hospitalizes you is probably the most earth-shattering to your world, maybe as time goes on we just become a bit desensitized to the worry and all the pain.
Each flare-up and rough patch has its own set of memories. Even after more than a decade of fighting an illness that’s become a big part of who you are…it’s still just as scary as they roll you down for the abdominal CT scan to see what’s brewing. It’s still just as worrisome when your significant other races to the hospital and you walk through those ER doors and know you won’t be going home. Each of these moments builds up our strength, even if while they are happening we feel weak and out of control.
I’ve come to realize that all my hospitalizations are a bit of a blur. They are hazy in my memory. Maybe I’ve blocked them out. The clearest moments are those when I get to go to home.
That first walk at the park after being in a hospital for days on end. Getting to eat a full diet and saying ‘so long’ to the clear liquids. Staring out the window of the car while “Fight Song” played on the radio after my bowel resection. Looking in the mirror at my battle wounds and being proud of what I’ve endured to get to this place, rather than ashamed. Taking that final prednisone pill and surviving another wean-down process. THOSE are the times that make us all stronger. Because we come to a place where we’ve overcome our difficult present and gotten to those brighter days. You must not sell yourself short. You need to soak it up and give yourself credit—because no one around you truly knows what it’s like to be in your shoes. We can have similar experiences, medications, surgeries… but, each of us has a unique story to share.
Battling IBD is certainly not sunshine and unicorns, but it makes the feel good days much more beautiful.
We learn not to take anything for granted—whether it’s feeling good after a meal out with family and friends or getting to attend a wedding and not feel any pain while you’re on the dance floor. Those are the times we celebrate. It’s verbally getting to say to my husband, “I feel SO good today.” It’s finding joy in the times when your disease gives you a break and you can feel like everyone else. It’s having the energy to take my son on a long walk and breathe in the fresh air, pain free. It’s eating popcorn as I type this and not feeling any repercussions!
So while Crohn’s is a roller-coaster of emotions and experiences, there is one constant through it all. Not just for me, but for you, too. We are strong. We are resilient. The suffering and pain is fleeting, it will pass. Just as those amazing and happy days will. Live in the now—don’t stress about tomorrow and only look back to recognize how far you’ve come along the way. When I think of myself “BC” (before Crohn’s) it’s almost like a different person.