One of the hardest lessons chronic illness has taught me is that my energy cannot be scheduled, negotiated, or bribed with coffee.
Actually, let me rephrase that.
Some days, my energy is not even the same from one hour to the next. Heck, sometimes it changes between breakfast and lunch.
There are mornings when I wake up feeling almost like my old self. I get up, tackle work, answer emails, run errands, and for a brief moment, I begin to believe that maybe—just maybe—I have finally figured this chronic illness thing out.
You know, the kind of day where you start mentally planning to reorganize a closet, deep clean the kitchen, solve world hunger, and finally answer those text messages from three weeks ago.
Then there are other days.
Days when getting out of bed feels like climbing Mount Everest. Days when taking a shower requires a recovery period. Days when my body suddenly decides that the energy I thought I had has been revoked without notice.
No warning. No explanation. No appeal process.
Just an abrupt reminder that Crohn’s Disease, Myasthenia Gravis, sleep disorders, and the rest of my alphabet soup of medical conditions do not operate on my schedule.
Apparently, my body likes to play a game called, “Surprise! Today’s activity is… absolutely nothing.”
On those days, my brain inevitably cues up “The Lazy Song” by Bruno Mars because apparently my internal DJ has a wicked sense of humor. The irony, of course, is that I am not being lazy. My body simply has other plans. 😂
Resting because your body requires it and being lazy are not the same thing, although chronic illness has a funny way of making us question that.
For someone like me—someone who has spent decades building a career, caring for others, raising children, advocating, and pushing through no matter what—this unpredictability has been incredibly difficult to accept.
I have always prided myself on being dependable.
The person who shows up.
The person who gets things done.
The person who figures it out.
So, when my body forces me to cancel plans, postpone tasks, or simply rest, my first instinct is often to apologize.
“I’m sorry.”
“I hate canceling.”
“I should be able to do more.”
“I’ll make it up to you.”
Sound familiar?
Along with those apologies often comes guilt—guilt for canceling, guilt for resting, and guilt for not being the version of myself I expected to be that day.
Lately, however, I have been trying to challenge that mindset.
Because the truth is, I am not inconsistent.
My symptoms are.
There is a huge difference.
I did not choose to have fluctuating muscle weakness. I did not choose chronic fatigue. I did not choose autoimmune diseases that seem to wake up each morning and collectively ask themselves, “How are we going to inconvenience Kia today?”
(And based on recent events, they appear to be very committed to their jobs. I swear they never call in sick, never request PTO, and apparently missed the memo about work-life balance. 😂)
What I am learning—slowly and often reluctantly—is that my worth is not determined by my productivity.
Because contrary to what my Type A personality believes, my value is not tied to how many items I cross off my to-do list in a day.
Trust me, my planner and I are still negotiating this arrangement.
💜 Rest is not laziness.
💜 Needing help is not weakness.
💜 Pacing myself is not quitting.
💜 Listening to my body is not something I need to apologize for.
Some days I can do more.
Some days I can’t.
Neither version of me is more deserving, more valuable, or more worthy than the other.
Both versions of me are worthy of compassion.
As I sit here writing this, I realize that perhaps one of the greatest acts of self-love for those of us living with chronic illness is learning to extend ourselves the same grace we so freely give to others.
If you are reading this while feeling guilty because your body required rest today, please know you are not alone.
Your value does not decrease because your energy did.
And if today is a low-energy day, maybe the bravest thing you can do is simply rest without apology.
That, too, is enough.
💭 Final Thoughts
Living with chronic illness often means living with unpredictability. It means learning to adjust expectations, honoring our limitations, and recognizing that our value extends far beyond what we accomplish in a single day.
I am still learning this lesson myself.
Some days gracefully.
Some days kicking and screaming.
But I am learning.
And maybe that is enough, too.
Chronic illness may control my energy levels, but it does not get to define my worth. That is one battle I am determined to win.
And if all else fails, there is always tomorrow… assuming my body and I can agree on the itinerary. 😂
Thank you for taking the time to read this entry from The Dual Diagnosis Diaries. Whether you are living with chronic illness, supporting someone who is, or simply seeking understanding, I appreciate you being here. My hope is that by sharing my experiences openly and honestly, others will feel less alone in their own journeys.
Founder • Author • Advocate • Future Wellness Coach
Kia Lorice
The Dual Diagnosis Diaries 💜
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