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, A while back, someone asked me the question everyone asks: "So what do you do for fun?" I opened my mouth and nothing came out. The honest answer had become "manage my body," and I knew that wasn't the answer she wanted. I stood there running through a mental list of things I used to enjoy, trying to figure out which ones were still true. That gap between the version of myself I could still name and the version I could actually live is where this week's post lives. Not the grief of...
Hi Reader, I want to tell you about a kind of grief I didn't have a name for until pretty far into this journey. It's not grief for my health, exactly. It's grief for a person who was already in motion before I got sick. Someone with a trajectory. Plans that made sense. A version of themselves they were actively becoming, one ordinary year at a time. Chronic illness didn't just interrupt that person's plans. It asked me to let them go entirely, without ever asking permission first. For a long...
Hi Reader, Somewhere in my first year or two after diagnosis, I caught my own reflection and had this small, strange thought: I don't totally recognize this person. Not dramatic. Just a quiet double-take. Patience running differently. Energy running differently. Even my sense of humor felt rewired somehow, in a way I couldn't fully explain to anyone who hadn't lived it. For a while I tried to fix it, like enough effort could get me back to exactly who I was before. What actually helped was...