Chronic Routine

In the years since I first showed symptoms of Crohn’s disease, I have gotten intimately familiar with what the chronic illness journey may look like. Or what this can include for someone who essentially becomes a life-long patient.

Ups and downs

As a patient with IBD, have you ever thought about the ways in which our days and our stories begin to look and feel like a rhythm? In my opinion, between our triumphs and tribulations, our ups and downs, and the ripples that the disease and its side effects/counterparts create in our lives, we have no choice but to learn to ride the waves. I absolutely recognize that this rhythm and the cycles within it differ from patient to patient, but I have really noticed that we all do find our own stride within these rhythms. Even more so, I’ve realized that our chronic illness rhythms can often start to mimic the days and lives of healthy individuals.

Times of quiet

There are cycles requiring patience, requiring waiting, requiring standing still. Listening to the quiet, accepting the quiet, embracing what all it means to you. To me, the quiet is a time for reflection. It’s a time to ask (and answer) the right questions. To make sure that the decisions I’m making are truly the best decisions for me. That my journey may not look or feel like any others, but it’s constantly molding and shaping to the things I want, and more importantly, the things I need.

Times of chaos

Then, there are times of chaos, times where everyone's in, racing around, looking at things through twisted lenses. Times where conversations are rapid-fire, decision making is critical and on a timeline, times when you’re asked to choose the ‘least worst option.’ There are times when life feels bright, when it feels rather dull, where others opinions are welcomed, and times where it’s just plain old too much. There are times we’re awake, times we’re asleep, times we’re awake wishing we were asleep or asleep wishing we were awake. The fact that sometimes, just sometimes, nothing in the world can comfort us. These are challenges specific to chronic illness or even IBD patients, but objectively, there are also challenges that nearly everyone in any walk of life can face at some point or another.

The face of chronic illness may be different, but the life-containing (a) chronic illness(es) runs rhythmically in a matter that anyone could understand. Our lives may have periods of quiet that last days or months, but they also have moments and days of brightness – that everyone (patients, caregivers, friends, family) should be able to embrace.

My routine might be different, but I'm still a person

I’ve noticed that it might be difficult to explain this to other people. To healthy people. Because, to them, our life might not be anything they would ever like to relate to. But I’ve found by sharing the idea that there’s a rhythm, that it might be unpredictable timing but one thing almost always leads to the next, I’ve found that they try harder to understand. That they try harder to realize I’m still a person, just like them, even though the crests and waves of my routine sound or feel different than theirs.

Have you ever thought about your IBD as a part of the framework which makes up the rhythms of your life? I’d love to hear your thoughts below!