Flare. It’s a common, yet dreaded, word used by IBD patients.
You would think that being a Crohn’s patient for nearly ten years, it would be a word I’d be quite comfortable with. Or at least a word that I use when describing my medical history and disease symptoms to others…but, ironically, it’s not.
I’ve always been one to downplay the severity of nearly everything going on inside my disease-stricken body. I’m sure many of you know just what I’m talking about. These responses may look all too familiar to some of you…
“Today was a relaxing day…I got some good reading done!” (While this is true, I strategically left out the part about doing 90% of that reading while in the bathroom.)
“Yes I had surgery last week, but no worries it was pretty minor”. (Is there really anything minor about months and months of recovery time?!)
Or, my personal favorite…“Yeah, today was a good day!” (Did I mention my “day” began when I was finally able to drag my fatigued body out of bed at 4 pm?)
While I pride myself on having a positive attitude and outlook most of the time, I’ve found that this positivity is also sometimes a warning sign that simply says one thing…denial! My ability to seemingly immediately emphasize these “silver linings” is a way in which I deny what is actually going on with me to others, but more importantly, to myself. Because let’s be real, who really wants to admit the reality of all that a flare entails!
And that, my friends, is why the word “flare” is not a common word in my vocabulary and I assure you it is not because I have been in remission for most of, or even half of, the last ten years. It is because I don’t want to admit it. For some reason, in my mind admitting this kind of thing threatens my ability to come up with endless silver linings and possibilities. However, seeing that I have spent the majority of my time over the last four months between my bed, the bathroom, and the couch, I think it is safe to say…I am in a flare.
Saying those simple words is incredibly humbling for me.
Going from being a super independent 20-something to living back at home with my parents, needing help with the most basic of tasks is a huge lesson in humility. I like to think that I can do it all, I can handle it. And most days, that is absolutely true. But sometimes, sometimes doing it all on your own isn’t necessary, and sometimes is just simply isn’t possible.
It is times like these in which I have to set aside my pride and rely on the support system around me to keep me going.
I must swallow my pride enough to reach out to the friend or family member that has said “let me know if you need anything” to say, I just really need someone to do a few loads of laundry for me, or could you come over this afternoon just to keep me company.
Yet one of the most humbling experiences I’ve had while being in a flare is that, quite simply, people can have a way of surprising you in the most unexpected ways.
Maybe the surprise comes when waking up to a chai tea latte (soy of course J) sitting on my night stand left there by my best friend stopping in as I was napping.
Perhaps it occurs when opening a package full of get well letters from a class of third graders, covered with drawings of the most adorable penguins because their wonderful teacher, and my dear friend, told them they were my favorite.
Or maybe it’s receiving an email from an IBD friend that simply says hey, I met another Crohn’s patient who is having a hard time and I think you’d really be able to help her. And in that sentence, those few simple words, my sense of purpose is restored.
Humbling. All of it is so incredibly humbling.
So here’s to being thankful for so many lessons in humility, and hoping that remission is right around the corner. And if it’s not, maybe it’ll be around the next one.