Chronic (adj.) Disorder (n.): My Life Post-Diagnosis

Before jumping into my husband’s diagnosis story, I want to finish mine.

My whole world has pretty much always been neat and tidy and organized and systematic.  Every thing has its place; every day has its plan.  At least that’s how it was until a few months ago.

Now I have a chronic disorder.  Think about that for a second…

• Chronic (adj.): persisting for a long time or constantly recurring; long-lasting
  • Synonyms include constant, ceaseless, unabating, unending, persistent
• Disorder (n.): a state of disruption to systematic functioning or neat arrangement
  • Synonyms include disarray, confusion, in a mess

My neat, tidy, organized, and systematic life has literally turned into a persisting, constantly recurring state of disruption…and it happened just like that, within a day.  How does that even happen?

Post-infectious IBS, that’s how.

I’ve already told you about the first few weeks of living with my disorder pre-diagnosis (if you missed that one, click here).  My life was utter chaos, and the chaos was the only consistent thing about it.  So when I finally received my diagnosis, I thought, “Ok.  What medicine do I need to take?  This is the 21st century…that’s what modern medicine is for, right?”  I also expected some dietary changes; after all, we’ve been dealing with my husband’s IBS for years…I get it.

What I didn’t expect was the trial-and-error; the physical weakness; the persistence of not feeling well.  That’s where the “chronic” bit comes in, I guess, but I’ve never really been sick before.  I didn’t plan for it, and I wasn’t ready.  Each day post-diagnosis brings something new, and some days I still don’t feel ready for this new life of mine.  One of the hardest parts is the hugs, smiles, excitement, and “Yay! You’re well again!” comments that come when people see me functioning.  Don’t get me wrong; I am so excited (right there with them) about being better, but I’m also reminded every single time of the fact that I am likely never going to be the way I used to be.  That is a hard reality to face over and over, especially considering the random and unexpected nature of my disorder.

But let me share with you a little something that carries me through the unknown:

“As Jesus went along, he saw a man blind from birth.  His disciples asked him, ‘Rabbi, who sinned, this man or his parents, that he was born blind?’  He said, ‘neither this man nor his parents sinned, but this happened so that the works of God might be displayed in him.  As long as it is day, we must do the works of Him who sent me.  Night is coming when no one can work.  While I am in the world, I am the light of the world.’  After saying this, he spit on the ground, made some mud with the saliva, and put it on the man’s eyes. ‘Go,’ he told him, ‘wash in the Pool of Siloam’ (this word means ‘Sent’).  So the man went and washed, and came home seeing.” – John 9:1-7

A lot of people have asked how I’ve stayed so positive throughout the months of illness and struggle.  I’ve honestly asked myself that a few times, too.  It’s really easy, if I let myself, to look back at 2017-Kyndall and say “WHY ME?!” when I see the healthy young lady who exercised five times a week, tried to eat well, and didn’t have a health concern in the slightest…

But then I think about this blind man.  Blind from birth.  No control over it, whatsoever.

I think about Jesus using something as lowly as spit to show His good works.

I think about the many people I know who struggle with chronic illness every day.

And I think about Jesus’ words: “Neither this man nor his parents sinned, but this happened so that the works of God might be displayed in him.”

I can’t control the fact that I have PI-IBS.  I can’t magically make it go away on my own.  I can’t return to 2017-Kyndall.

But I can show the works of God displayed in me through the battle I’m facing.  I can accept the disorder in my life and use it for something good. I can turn an intestinal disorder into something beautiful, just like Jesus did with his spit.  I can put a smile on my face and count my numerous blessings.  I can forget asking “why me?” (because everyone faces hardship at some point), and instead ask “how can I help others?”.  I can provide encouragement and resources to people who are going through similar situations.  Just like the blind man, who shared his story with the people around him and displayed God’s work in his life, I can be a light in the darkness.

If you’re beginning your journey with post-infectious IBS, I’m going to level with you: your life has changed.  Period.  I don’t know how long those changes will last; I don’t know how significant they will be; I don’t know what medicines you’ll take or how many doctor’s visits you’ll have or how much you’ll miss as you adjust to your new life.  That’s one of the worst parts of PI-IBS, in my opinion.  You just don’t know what tomorrow looks like, let alone the rest of your life, and for a lifelong planner like me – THAT.  IS.  SO.  HARD.

But you can do this.  You’re going to struggle, and you’re going to cry, and you’re going to feel angry, and you’re going to feel like giving up sometimes…but don’t let yourself stay in that darkness.  Be a light.

***Like what you’ve read so far?  Feel free to share on social media!  Follow IBS Takes Guts for more posts soon to come on my husband’s diagnosis story, as well as tips and tricks for living well with IBS/PI-IBS and low-FODMAP recipes!***