πͺI create resources to help people adapt to living with chronic illness so they can thrive.
π£οΈThe self-advocacy skill nobody tells you about
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Hi Reader, I want to tell you about the part of self-advocacy nobody warned me about. For years I thought the whole battle was getting brave enough to speak up β with my partner, with coworkers, with doctors who didn't want to hear it. And that part is real. It took me a long time to stop hinting at what I needed and just say the actual thing out loud. But here's what I didn't expect: even after I got braver, I'd still walk into appointments and blank on the details that actually mattered. Did the nausea start before or after the dose change? Was it worse on the days I skipped my afternoon dose, or just worse in general? Confidence doesn't fix a memory gap, and appointments are still the one room where good intentions run into the limits of what your brain can reliably hold onto while you're also living through it. I wrote the whole story of how self-advocacy actually changed my life β the parts that got easier and the part that's still hard β over on the blog. And if the appointment-room problem sounds familiar, I built something for it: the Medication Side Effect Tracker, a simple way to log what your meds are actually doing to you so you're not relying on memory to make your case. Read the full post here β How Self-Advocacy Transformed My Life with Chronic Illnessβ Take care of yourself this week, |
April Smith | The Thriving Spoonie
πͺI create resources to help people adapt to living with chronic illness so they can thrive.
Hi Reader, I've been keeping a mental tally lately. The phone calls. The portal messages that never got a real answer. The forms that ask for information I already gave someone else last month. I don't write any of it down anymore. I just carry it, the way you carry a phone number you've dialed so many times it's stopped feeling like information and started feeling like a reflex. Here's the thing I keep coming back to: none of this shows up on a calendar as "work." There's no meeting called...
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...
Hey Reader, I want to talk about something that comes up in this community more than almost anything else β 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 β 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...