ðŠI create resources to help people adapt to living with chronic illness so they can thrive.
ðĐš The appointment prep that actually saves your energy
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Hi Reader, If you've ever walked out of an appointment more tired than when you walked in, even though "all you did" was talk for twenty minutes, this one's for you. Advocating for yourself in an appointment isn't one task. It's tracking your symptoms, reading the room, watching your tone, and deciding in real time what's worth pushing on, all while your body may already be running on empty. That's a lot of invisible work that never shows up as "work" from the outside, which is part of why the crash afterward can feel so disproportionate to what actually happened in the room. New on the blog, I get into how to lower that cost without doing less advocating. The short version: decide your one non-negotiable before you walk in, write your main point out word-for-word instead of relying on finding it on the spot, and build recovery time into your day afterward the same way you'd budget for the appointment itself. If you're also neurodivergent, I touch on how sensory load and processing stack on top of all of it too. Read the full post here: Chronic Illness Appointments: How to Advocate for Yourself Without Burning Outâ A little news of mine, just in time for Disability Pride Month!ðĪâĪïļððĪðð I recently had the honor of contributing to Beloved as We Are, a new book from Skinner House Books/UUA about disability inclusion and belonging in faith communities. It dives into things a lot of us know all too well: non-apparent illness, masking, ableism, and what it actually takes to feel welcomed rather than just tolerated. Even if you're not part of a Unitarian Universalist congregation (or any congregation), I think you'll recognize a lot of yourself in these pages. If you want to check it out (or know someone who'd appreciate it), you can find it here (I get no payment from this; it was a labor of love): Beloved as We Are ââ Take care of yourself this week, |
April Smith | The Thriving Spoonie
ðŠI create resources to help people adapt to living with chronic illness so they can thrive.
Hey Reader, I want to talk about something that comes up in this community more than almost anything else â and still somehow doesn't get named clearly enough. Medical gaslighting. It's what happens when a provider closes the door on investigation before it should be closed â attributing your symptoms to stress, citing your age or body size as the explanation, or treating a partial finding as the whole answer. And if you've experienced it, you probably already know the particular kind of...
Hey Reader, There's a particular kind of frustration that comes with feeling like you're trying to manage your illness well and still somehow falling short. Like you're doing everything you can think of, and it's still not working the way you hoped. This week's post is about the patterns that tend to make chronic illness management harder in pretty consistent ways. Not because anyone is doing something wrong, but because some of these habits emerge almost naturally from living with a chronic...
Hi Reader, Have you ever had a day where nothing was technically wrong, but something felt off anyway? Not a symptom exactly. More like a shift. A heaviness you couldn't place, or a flatness that didn't quite make sense. For a long time, I explained those moments away. I'm probably just tired. I'm probably overthinking it. And by the time I was sure something was actually happening, I was already in it. That's what this week's post is about â the early signals your body sends before things...