Allison Baggott-Rowe

A gentle reminder that healing and productivity are not the same thing 💜

Some days the win is answering emails.
Some days it’s advocating publicly.
Some days it’s making it through a medical appointment.

And some days it’s sitting quietly absorbing the sunset with the people (and pets) you love most.

I’m trying to get better at celebrating all versions of progress instead of only the visible ones.

What’s something small that helped you feel grounded this week? ✨

One of the strangest parts of chronic illness is becoming incredibly skilled at appearing “fine.”
You learn how to smile through pain.
How to translate exhaustion into politeness.
How to make complex medical realities sound simple enough for other people to digest.
But “looking okay” and being okay are rarely the same thing.
A huge part of why I wrote Beyond Exhaustion was because I wanted patients, caregivers, and healthcare providers to better understand the invisible labor happening behind the scenes every single day.
Not just survival.
The planning.
The adapting.
The grieving.
The resilience.
The constant recalculation.
And also the joy, creativity, humor, love, and community that still exist alongside all of it. 💜

In 2023, I didn’t understand what my body was trying to tell me during the Flying Pig Half-Marathon.

I thought I just needed to be stronger—so I pushed through the pain, the fatigue, the discomfort.

At mile 7.5, everything went hazy.

It wasn’t the rain.

It was me.

I collapsed.

First responders medically withdrew me from the race. I begged to go back—but they chose my body when I couldn’t.

At the time, I thought I had failed.
Especially in front of my family.

This year, I crossed the finish line.

Not because I pushed harder—
but because I finally had answers.

Living with Ehlers-Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, and Type 1 diabetes means my body plays by different rules.

Once I understood that, everything changed.

Support changed it.
Access changed it.
Being believed changed it.

If you’re still in the “before,”
you’re not behind.
You might still be searching for answers.

Keep going. 💜

       

There was a moment when I realized I couldn’t keep living like my body would eventually “catch up” to my expectations.
I had been treating my limits like temporary obstacles—something I could push past if I just tried hard enough.
But that wasn’t what my body needed.
It needed me to listen.
To adapt.
To build a life around what was sustainable, not just what was expected.
That shift changed everything.
Not overnight. Not perfectly. But meaningfully.
It’s part of what led me to write Beyond Exhaustion—to put language to that experience and to help others feel less alone in it.
If you’ve had a moment like that, I see you. 💜

There’s a gap between what patients experience and what providers are trained to see.
Most of us aren’t asking for perfection.
We’re asking to be heard. To be believed. To be met with curiosity instead of dismissal. When that happens, care changes. When that happens…you can change the world.
This is something I explore deeply in Beyond Exhaustion—and something I hope continues to shift in meaningful ways.
If you’re in healthcare, I’m so glad you’re here. 💜

These numbers aren’t abstract.
They’re lived.

Thousands of finger pricks.
Hundreds of injections.
Constant site changes.

This is what managing Type 1 diabetes actually looks like over time.

It’s not just “checking your sugar.”

It’s a lifetime of decisions, calculations, and resilience.

28 years today—and still going. 💜

#ɴᴇᴠᴇʀɢɪᴠᴇᴜᴘ