ðŠI create resources to help people adapt to living with chronic illness so they can thrive.
ð The job no one tells you you're taking on
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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 "spend forty minutes being your own records department." There's just a phone call that takes longer than it should, and a night where you lie awake trying to remember whether you told the new doctor about the reaction you had two years ago, or just meant to. So if you've hung up the phone after "just" a call to the pharmacy and felt like you ran a marathon nobody will ever know about, I want you to hear this clearly: that's not an overreaction. You're doing unpaid coordination work that a case manager would be paid a salary to do, on top of managing a body that's already asking for less. The exhaustion is the accurate cost of a job you never applied for. This week's post goes deeper into why that job is so heavy, and what actually helps when you're the only one doing it. Read: The Exhausting Math of Managing Your Own Chronic Illness Careâ Sending you rest wherever you can find it this week. |
April Smith | The Thriving Spoonie
ðŠI create resources to help people adapt to living with chronic illness so they can thrive.
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 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...