What’s it like?

Today is #WorldIBDDay and I wanted to do something a little different to raise awareness for this disease. I know a lot of us that have IBD wish that others understood what we go through on the inside, that you can’t see. I hear this a lot throughout the online community. So I thought today I would address this head on, from my point of view—

What is it like living with Crohn’s Disease? 

It’s waking up every day knowing you have to make this one REALLY count!

It’s planning out the best use of your time because you have very limited energies each day and they deplete rapidly.

It’s a mental weight you carry around that never goes away.

It’s a constant reminder of your mortality.

It’s completely unpredictable!

It’s knowing you will be managing this disease for the rest of your life because there is no cure yet.

It’s never knowing when your symptoms will hit and sometimes living in fear or anxiety because of that fact.

It’s redefining your idea of “normal”

It’s being okay with just existing some days, nothing more.

It’s coming to grips with the fact that the carefree days are over.

It’s pain that cripples you.

It’s numerous medications that need to be taken daily, all with different conditions on how, when, and with what they need to be taken.

It feels like the loss of choice and a loss of control over your life.

It’s actively deciding to carry on, despite all the challenges you encounter on a daily basis.

It’s finding a new will to live.

It’s being overly grateful for those very few healthy days you get.

It’s battling for your own healthcare!

It’s knowing all the nurses, receptionists and doctors by their first names at multiple medical facilities!

It’s being forced to face your fears, multiple times!

It’s realizing that we are never really in control, we only think we are.

It’s actively looking for the light amongst the darkness.

It’s grieving for the loss of your old life.

It’s finding a way to laugh so you don’t cry.

It’s a constant reality check, every minute of every day.

It’s a buzzkill!

It’s appreciating the smaller things in life and knowing they can also be the most meaningful things too.

Fellow Crohnies, based off your experiences–How would you describe living with Crohn’s disease? What is it like for you? I would love to compile another blog post with all of YOUR descriptions featured!

Published by Jana Rosenberger

I blog about my life with Crohn's disease and all things quality-of-life. I don't sugar coat this journey but I do find a way to laugh!

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