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...
.png)
Ever been lying in bed doing absolutely nothing, and suddenly your heart is pounding like you just ran a marathon? Or maybe you stood up too fast and felt dizzy, nauseated, or like your body was short-circuiting? That’s not anxiety—it could be autonomic dysfunction.
And if no one’s explained it to you yet, let’s change that right now.
What Is Autonomic Dysfunction?
The autonomic nervous system (ANS) controls everything your body does automatically—heart rate, blood pressure, digestion, temperature regulation, even pupil dilation. When it’s working well, you never think about it. But when it’s out of balance? Every little thing can feel like a crisis.
Autonomic dysfunction happens when your ANS stops regulating smoothly. Instead of adapting to small changes like posture shifts or temperature, your body overreacts—or underreacts. The result? Unpredictable symptoms that are easy to dismiss but impossible to ignore.
Common Symptoms (That Get Misdiagnosed Constantly)
-
Rapid heart rate while at rest (especially after eating or standing)
-
Dizziness, lightheadedness, or feeling faint
-
Heat or cold intolerance
-
Digestive issues (nausea, early fullness, constipation)
-
Brain fog, fatigue, and anxiety-like symptoms
These symptoms often come and go. Some days, you might feel almost normal. Other days, you’re on the couch all day trying to keep your heart rate under control. That variability can make it even harder to explain to others—or to get providers to take you seriously.
Many people are told it’s “just stress” or are prescribed anxiety meds without a full workup. If that’s your story, you’re not alone—and you’re not imagining things.
What Triggers It?
Autonomic dysfunction can show up as part of many conditions:
-
Long COVID
-
Lupus, Sjogren’s, or other autoimmune disorders
-
Diabetes
-
Mast cell activation syndrome (MCAS)
-
Chronic fatigue syndrome (ME/CFS)
-
POTS (Postural Orthostatic Tachycardia Syndrome)
It can also emerge after trauma, surgery, infections, or even without a clear cause.
Environmental factors like heat, dehydration, overstimulation, and even emotional stress can also trigger a flare. Understanding your personal triggers can make a big difference in reducing symptom intensity.
How to Start Managing It
There’s no one-size-fits-all approach, but these strategies help many people:
1. Track Patterns Thoughtfully
Use a wearable like the Fitbit Charge 6 or a symptom tracker to spot connections between activity, food, stress, and symptoms. I created a printable version in my Ko-fi shop that’s specifically made for chronic illness tracking.
2. Hydrate + Salt
Electrolytes matter. Many people with autonomic dysfunction need more salt, not less. Brands like LMNT or Nuun can be helpful. Keep an insulated bottle handy to sip throughout the day.
3. Compression and Cooling
Compression socks and cooling gear help your body regulate blood flow and temperature. Try compression socks or a cooling towel during summer or flare days.
4. Build Rest Into Your Routine
Your nervous system heals when it feels safe. That means preemptive rest, low-stimulation environments, and realistic pacing. I’ve designed planning tools to help with this—find them in the Ko-fi shop.
5. Advocate for Real Testing
If you think you’re dealing with autonomic dysfunction, ask your provider about a tilt-table test, 24-hour heart rate monitor, or autonomic reflex screen. These tests provide real data to validate what you’re experiencing.
Final Thought: You're Not Fragile, You're Adaptive
Your body isn’t broken—it’s overcompensating. And while that comes with challenges, it also means you can work with your system instead of fighting it.
Start small. Track what you can. Rest when you need to. Speak up when you're dismissed. And above all, know this: you're not lazy, and you're not alone.
If you’re looking for more practical tools for navigating chronic illness, check out the full set of symptom trackers, planning tools, and survival templates in the Ko-fi shop. Everything there is made for real people living in real bodies—and built from lived experience.
We’re not here to be dismissed. We’re here to be understood—and to understand ourselves.
Comments
Post a Comment