When Traditional Work Stops Working (What Lupus Taught Me First)
Chronic illness puts you in a middle ground almost nobody talks about. You are functional enough that nobody around you clocks the struggle. You are depleted enough that you feel like you are constantly running on empty. I call it the chronic illness middle ground, and if you're reading this, you probably already know it by a different name. Your own.
I wrote about this in Breaking Free: Creating a Career That Supports Your Chronic Illness, because I needed someone, anyone, to put words to what I was living. Nobody did. So eventually I did it myself.
What lupus taught me first
I learned this from lupus long before any career coach got the chance to teach me, and I learned it on a Tuesday morning I can still describe in exact detail. My joint pain usually responded to medication and sheer willpower. It didn't respond that day. My hand shook so hard reaching for my coffee mug that it spilled across the desk, and while I was scrambling for tissues, the room narrowed into tunnel vision. That wasn't a bad day. That was my body demanding a conversation I'd been avoiding for years.
I wish someone had told me sooner that our body keeps impeccable records of every compromise we make. Every time you pushed through when you should have rested, every deadline you hit while feeling terrible, it was taking notes. Mine had been keeping score for months before that Tuesday. I just wasn't reading the ledger.
I watched strategic planning meetings happen without me. It wasn't malice. My input just got silently downgraded to a brief email update afterward. My projects, the ones I'd guided for years, got handed off "temporarily," and you know how that goes. Temporary stretched into permanent, and nobody ever circled back to hand them back. I didn't lose my job in one moment. I lost my seat at the table one meeting at a time, and almost didn't notice until it was gone.
My life shrank outside of work the same quiet way. "We haven't seen you at book club in months," a friend texted. It wasn't just book club. It was dinners, movies, weekend trips, all the things that once gave me balance. Work eats every available bit of energy, and there's nothing left over for living.
I still can't unsee one line from the chapter:
The intention was consideration, the impact was irrelevance.
My manager meant it kindly when she pointed out "we're already letting you work from home." I heard something else. I heard that my needs were an inconvenient exception to the rule.
And then came the doctor's office. Test results, measurable progression, and a plain sentence I still hear in his voice:
Your current lifestyle is accelerating the disease process. Something has to change.
That's the moment the math finally tipped.
Some questions, not advice
I built the practical part of that chapter around a handful of questions, because when you're this deep in it, reflection lands harder than advice ever does. Don't skim these, just sit with them:
How long does it take you to bounce back from a demanding day? And is that stretching longer than it used to?
Are you using more medication, supplements, or treatments than you were a year ago?
What have you put on hold "temporarily" while you manage work demands?
How many invitations have you declined? How many hobbies have you quietly abandoned?
Is your life getting smaller instead of fuller?
I'm not asking rhetorically. Answer them, even if it's just in your head, on the walk to get coffee, or in the notes app you'll never look at again. The point isn't to have a tidy answer. The point is to notice the pattern.
You're not failing
You are not failing. You are not weak. You are not giving up. You are gathering information about what does and doesn't work for your unique situation, and that's not the same thing as losing.
So, tell me. What was your Tuesday morning like? When did your body finally get loud enough that you had no choice but to listen?
I'll be in the comments. 💜
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