Check out our storefront for self-advocacy tools and consultations. Or leave us a tip to show your support. Welcome to Patient Empowerment Pulse: Real-Life Wisdom from a Professional Patient Who I Am Welcome to Patient Empowerment Pulse, a blog built on the hard-won wisdom of someone who’s lived both sides of the healthcare divide. I’m Joanna, and this is more than just a health blog—it’s a survival guide for anyone trying to navigate chronic illness, complicated care teams, and a medical system that often feels like it’s working against you. I didn’t set out to become a professional patient. I trained for a career in culinary arts. But life had other plans. Over the years, I was diagnosed with lupus, Sjögren’s syndrome, spondylitic arthritis, inflammatory-onset diabetes, and a growing list of related conditions. That’s when I discovered that all my professional training didn’t fully prepare me for what it means to actually live this every day. This blog is where I share the str...
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Intro
When you live with chronic illness, pain is usually the first thing doctors ask about—and the first thing we’re told to measure. But over time, you start to realize something: pain might not be the best lens for understanding your day-to-day life.
The better question might be: “What could I do today, and what did it cost me?”
This article is for those of us who’ve been at this a while—who’ve got symptom logs, spreadsheets, and war stories—but still feel unseen. If you’ve ever felt like pain is only part of the picture, you’re not imagining it. Especially for conditions like lupus, ME/CFS, dysautonomia, or inflammatory arthritis, energy is often the truer signal.
This isn’t theory. I’ve lived this shift—and watched it change everything from my care plans to my self-compassion. If you’re wondering how to track chronic illness symptoms in a way that actually helps, this might be your missing metric.
The Problem With Pain Scores
Pain scales have a role, but let’s be honest—they’re blunt instruments:
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They don’t show whether you’re functional.
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They reduce layered experience to a single digit.
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They keep the focus on suffering, not strategy.
You can have a “3 out of 10” pain day and still be totally wiped out. Or a “7 out of 10” and still manage to cook, drive, or work. Pain doesn’t always correlate with capability.
And when all we track is pain, we end up reinforcing a problem-solver mindset: if there’s no pain, we’re fine. If there is pain, we’re broken. That’s not the whole truth—and it’s definitely not the whole you.
One of my clients, a woman with lupus and POTS, kept telling her doctors she was “doing okay.” Her pain was low, but she was collapsing by noon every day. The problem wasn’t pain—it was an energy pattern no one was measuring.
Energy as a Functional Metric
Tracking energy lets you answer a different kind of question: What’s actually possible today? That’s often where the real insight lives.
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What could I do?
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How long did I last before crashing?
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What drained me? What restored me?
It’s less about rating your symptoms and more about noticing your rhythms. And when you track energy consistently, you begin to:
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Plan your days with fewer flares
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Spot early signs of overdoing it
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Explain your limitations without needing perfect labs
During my own recovery from an autonomic crash, pain didn’t guide me—energy did. I had to learn to listen to when my body said “not yet,” even if nothing technically hurt. That shift saved me weeks of recovery time.
How to Start Tracking Energy
No special tech required. Here’s what to jot down each day:
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Morning energy (1–10 scale)
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Afternoon stamina
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Brain clarity / mental sharpness
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Time to recover from activity
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What helped? What drained?
You’ll see patterns faster than you expect. Maybe heat takes you out. Maybe you do better on the days you skip breakfast. Maybe Mondays always wreck you. Energy doesn’t lie—it just takes a while to hear it.
Some of my clients use wearables to support their tracking (Fitbit, Oura, etc.), but honestly? A notepad works fine. If you want a head start, our Energy + Symptom Tracker is built for this exact process.
Why This Helps With Advocacy
Most chronic illnesses don’t show up cleanly in labs. That’s frustrating. But when you can walk into an appointment and say:
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“My pain is stable, but I had to cancel work three times last week because my energy tanked.”
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“I crash after 30 minutes of housework, even on low-pain days.”
You’re not just reporting symptoms—you’re describing impact. That changes the conversation.
One of my clients brought an energy tracker to their disability appeal. The reviewer said it was “the clearest picture” they’d seen. That appeal was finally approved.
Final Thoughts: From Surveillance to Partnership
Tracking energy doesn’t mean obsessing. It means partnering with your body instead of fighting it.
When you stop asking, “How broken am I today?” and start asking, “What’s available to me right now?”—something shifts. You go from surviving your symptoms to navigating them. And that’s where real power lives.
If you’ve been trying to explain your fatigue, your flares, or your invisible crashes, try tracking energy for a week. You might find it speaks louder than pain ever could.
Want a simple way to start? Download our Energy + Symptom Tracker and start collecting data that actually reflects your life—not just your labwork.
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