I didn’t wake up one day and get diagnosed with dysautonomia.

It was more like… my body started leaving clues years ago, and I kept collecting them like puzzle pieces I couldn’t make sense of yet. Some were loud. Some were subtle. Most were brushed off. And for a long time, I learned to live in the in-between… the space where you know something is wrong, but you can’t prove it in one appointment.

The early years… when “tired” wasn’t just tired
I’ve had asthma since I was a kid, so “breathing stuff” was always part of my life. But as I got older, it wasn’t just my lungs. It was fatigue that didn’t match my life. Pain that moved around. GI problems that were hard to explain. Days when I felt like I needed multiple naps just to function.

Back then, there were a lot of labels floating around… fibromyalgia, chronic fatigue, IBS, “maybe autoimmune,” “maybe lupus.” My attempt was to trust the process. I tried the meds. I tried to be optimistic. But deep down, it felt like my body was acting as if it were in distress… even when the labs kept coming back “fine.”

2011… the year my body got loud
In 2011, things escalated dramatically. I ended up hospitalized with severe respiratory issues and was ultimately diagnosed with acute eosinophilic pneumonia. It was the kind of illness that changes you… not only physically, but mentally. It made me aware of how fast life can flip, and how fragile “normal” really is.

When that settled down, the bigger pattern didn’t go away. Fatigue lingered. Pain persisted. The weird, unexplained symptoms stayed.

The “maybe lupus” chapter… and the first big invalidation
At one point, lupus was a serious question. I went through evaluations and consultations… and ultimately, the specialists didn’t think lupus fit, especially with repeatedly negative testing and no clear inflammatory findings.

That should’ve felt like relief. Instead, it felt like someone took the only “possible explanation” off the table… and left me standing there with the same symptoms.

When you’re sick and no one can name it, you start doing this awful math in your head…

If the tests are normal… then why do I feel so abnormal?

The GI years… when my body stopped cooperating
My gut became its own war. Not just “stomach issues,” but full-body consequences from not being able to eat, hydrate, or tolerate nutrition like a normal person.

Eventually, I received a diagnosis of gastroparesis (delayed stomach emptying), and I later required significant interventions, including surgery and tube feeding. That part of my story matters because dysautonomia isn’t just dizziness and heart rate… it can affect digestion, hydration, temperature, energy, pain, and the way your body handles the basics of staying alive.

It was around this time that I stopped seeing my symptoms as separate problems and started seeing them as one system failing to regulate.

The heart rate piece… and why “anxiety” didn’t fit
One of the most frustrating parts of this journey has been how often “anxiety” gets blamed for symptoms that are clearly physical.

Yes, chronic illness can cause anxiety. But anxiety doesn’t explain everything.

There were times my heart rate was up, my body felt like it was buzzing, my chest felt tight, and I felt shaky and unwell… even when my mind was calm. There are medical records that show episodes like sinus tachycardia (fast heart rate) during evaluation.

That’s when I started pushing harder for someone to look at my nervous system… not just my mood.

The long search… and the testing that ruled things out
I’ve had a lot of workups over the years, including testing for autoimmune and neurological causes of dysmotility. Many of those panels came back negative.

And if you’ve lived this life, you know the emotional whiplash of that…

Negative results are good news… but they are also a closed door.

And you can only walk through so many closed doors before you wonder if you’re the problem.

The moment it finally had a name… POTS and dysautonomia
In 2024, I underwent autonomic testing, including a tilt table test… and it came back positive for POTS.

That was a turning point.

Not because it magically fixed anything… but because it was proof that my body wasn’t “being dramatic.” My nervous system was not regulating correctly. My symptoms weren’t random. They had a thread.

Dysautonomia became the umbrella that finally made sense of the messy, scattered story I’d been living in for years.

What dysautonomia looks like in my real life
For me, dysautonomia has been more than one symptom. It’s been a full-body experience… the kind that affects how I function, how I parent, how I sleep, how I exist in the world.

It can look like…

• Feeling exhausted in a way rest doesn’t fix
• Feeling faint, weak, shaky, or “washed out”
• Heart rate spikes, especially with standing or activity
• Heat intolerance and cold sensitivity
• GI dysmotility, nausea, and hydration issues
• Pain flares that don’t follow normal rules
• Days when my body feels like it’s in fight-or-flight for no reason

And the hardest part is this… a lot of it is invisible.

Why I’m sharing this
I’m sharing my journey because I know what it’s like to search the internet at 2am, hoping someone else can explain what you’re feeling. Feeling dismissed is something I know about. I know what it’s like to look “fine” while your body is falling apart.

If you’re here because you’re looking for answers… I see you.

And if you’re here because you love someone like me… thank you for trying to understand a body that doesn’t play by normal rules.

This is my journey to dysautonomia… and I’m still on it.