Why I Had to Build (and Defend) My Routine
When chronic illness began taking over my life, I was lucky in one specific way: I already had a routine built into my days.
I had young children before my health completely turned upside down. My life was already structured around feeding times, play times, and nap times. At first, that routine was purely for them. But as my disabilities progressed, I realized that very same structure was saving me.
During their afternoon nap times, I would rest. Their meal times ensured I actually ate. Their predictable schedule gave my body a framework to survive on.
As my kids grew older, I kept that consistency. Today, instead of nap times, my kids have quiet time in their rooms where they can read or relax. And I use that exact same window to rest and recharge.
Because it’s built around my children, people on the outside often understand it a little easier. They think, “Oh, she’s just on a schedule for her kids.” But even then, people still judge. They think my kids should be doing something else, or that I should be doing more.
No matter what you do, someone will always think they know better than you do about your life.
Learning the Hard Way
For a long time, I used to give in when people pushed against my schedule.
Family members would want to plan events right in the middle of my crash window. Doctors’ offices would book appointments during times when my brain was completely offline. Because I didn’t want to cause friction or make anyone feel uncomfortable, I said yes.
I sacrificed my boundaries to make everyone else happy.
And I paid for it every single time.
When you live with chronic illness, overusing your energy isn’t just a matter of feeling “a little tired” for the evening. Pushing past your limit can trigger a flare that steals the next three days—or even weeks—of your life.
When Boundaries Hurt
The hardest part of protecting a routine isn’t planning it. It’s defending it against the people you love.
After one holiday season, I was in the middle of a severe flare-up. My parents wanted to come over to bring gifts for the kids. I gently let them know that I was really sick and asked if we could reschedule for when I felt a bit better.
My dad replied that I could just go lay down in my bedroom while they visited with my kids.
It broke my heart. It made me feel discarded—like I didn’t matter in my own home during a holiday celebration, and that I should just go hide away.
When I pushed back and firmly said no, that the time simply didn’t work for us, the response was a four-paragraph text message. It criticized my motherhood, claimed I was hurting my kids, suggested I needed psychological help, and insinuated my illness was all in my head.
It was deeply painful. The guilt trip and manipulation were overwhelming.
Nobody Takes Care of You Like You Do
That experience taught me a hard, crucial truth: Nobody is going to protect your body for you.
When you bend your non-negotiable boundaries to keep someone else comfortable, they aren’t the ones who suffer the physical consequences afterward. You are.
It is far better to risk hurting someone’s feelings by saying “that time doesn’t work for me” than it is to physically hurt yourself by pushing past your limits.
Your schedule isn’t a preference or a luxury. It is your survival strategy.
Take Back Your Rhythm
I built the Resiliency Guide because I know how isolating and exhausting it is to navigate this alone.
If you are struggling to find a rhythm that honors your body, or if you feel guilty every time you have to say no, I invite you to explore Pillar 1: Structure & Routine.
In this section, we break down how to map out your body’s actual schedule, identify your non-negotiables, and practice setting quiet, firm boundaries without over-explaining yourself.
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