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It's hard to say why the gaslighting we experience from our loved ones, coworkers and medical community hits so hard. The isolation? The being misunderstood? The being forced to crash from a lack of understanding and having to go beyond your baseline? They are all strong contenders.
But I think one...
This morning, I made the decision to take the entire day off. I had plans, and I cancelled them. I had a coaching call, and I rescheduled. I had a laundry list 100 items deep of things I needed to get done, and I postponed them all. My phone rang, and I didn't answer. People texted and I felt the im...
Ever since 2020, there’s been a bit of a pink elephant sitting in the corner of the ME/CFS community. (heyyy who got you picturing a pink elephant? This gal. And now, with tap shoes! Ok, ok I'm stopping.)
And at the same time, there’s been a massive spotlight on that elephant in the world of medica...
Welp. I need to talk about something I saw the other day on Instagram. I wish I could tell you that it was a cute video of a puppy dressed up in human clothes (I mean, that’s like 50% of my algorithm these days), but it wasn’t.
It was a reel from someone with ME/CFS saying, with absolute certainty,...
 When the crawl between the bed and the toilet feels like Everest, the idea that you might ever live a normal life again seems impossible.
And yet, 5 years after I became severe with MECFS - I just booked a ticket to attend my friend’s wedding in Malaysia in September. (yassssss). I’ll be flying 1...
 The other day I got into an argument with a keyboard warrior, the likes of which I had never seen, and about something I never expected. I think at this point I have met them all; people who think nervous system work is pseudoscience, people who don’t believe in pacing and think you can climb a mou...
One of the most devastating aspects of ME/CFS is the complete loss of trust within your own body.
Before this illness, most of us had a kind of quiet, synergistic relationship with our bodies, where if you asked it to do something, it would do it.
There was a normal, expected relationship between ...
Today I'm tackling an issue that lands dead smack RIGHT in the center of MECFS; it is called the C-R-A-S-H.
I call them "wobbles" (for reasons we wont go into in this letter), but by whatever name we use, you know precisely what I'm talking about.
You can FEEL it coming on; it's a sudden loss of a...
Last night I was visiting with my niece and nephew as I roll through the Deep South. My brother’s kids are like my own, and I adore watching them grow into ever-increasingly magical humans. My nephew was so eager to show me his latest passion—hand-painting Warhammer figurines with tools almost invis...
One of the reasons I am so passionate about advocacy for ME/CFS awareness is because I know firsthand the way a lack of understanding from our loved ones can make this illness worse.
I’ve seen people recover without tangible, 3D, emotional support — even those living in isolation. I’ve also seen pe...
Everyday, IÂ meet people with MECFS who all seem to share a universal frustration around the process of recovery. They've been working on it for a long, LONG time (sometimes months or even years) and they feel they've done EVERYTHING to get better, yet still feel completely stuck.
Then they see peop...
One of the hardest things about navigating my illness—and the recovery process—was learning how to wiggle my way out of my relationship with efforting.
For decades, I'd built an empire on efforting.Â
I was a classic overachiever.
An over-doer.
A pusher of boundaries.
I loved the idea that I was...
