When the Body Mirrors the Mind: The Connection Between EDS, Autism, and Chronic Survival

By Frankie — Disabled Air Force Veteran | Chronic Illness Advocate | Medical Nerd

For most of my life, I lived in survival mode without realizing it. My body was always tight, tense, and unpredictable — pain was constant, fatigue was familiar, and “pushing through” was my default. What I didn’t know back then was that my body wasn’t just tired — it was screaming for understanding.

The Hidden Thread

When I was diagnosed with Autism, ADHD, and Major Neurocognitive Disorder by my neuropsychiatrist who finally saw me as a whole person, something unexpected happened. In the middle of discussing my symptoms, he asked a simple question:

“Are you hypermobile? Do you have stretchy skin?”

No doctor had ever connected those dots with my medical history before. But that question — and the awareness behind it — changed the trajectory of my health. It led to the realization that I also have Hypermobile Ehlers-Danlos Syndrome (hEDS), a connective-tissue disorder that affects collagen throughout the body.

Hypermobile EDS — The Unseen Connection

Unlike other forms of Ehlers-Danlos Syndrome, hEDS doesn’t yet have a definitive genetic marker. It’s complex, often misunderstood, and dismissed for years as “just joint pain” or “being flexible.” But hEDS is more than that — it’s a systemic condition that affects joints, muscles, skin, and even the nervous system.

New research suggests that hEDS may have immunological roots, linking it closely to the neurodivergent population. Many of us who live with Autism and ADHD also show signs of connective-tissue differences — hypermobility, poor proprioception, and heightened sensory awareness. It’s as if our entire nervous system and connective-tissue matrix are speaking the same overstimulated language.

“My connective tissue is as sensitive as my emotions — both overstretch in the wrong environment.”

The Co-Morbidities They Don’t Warn You About

hEDS rarely comes alone. It brings a whole entourage of conditions that impact every system of the body. For me, that includes:

• POTS (Postural Orthostatic Tachycardia Syndrome): a form of dysautonomia that makes my heart race and blood pressure drop when I stand up. Some days, even showering or walking across the room feels like climbing a mountain.

• Gastroparesis: slow digestion that leaves me nauseated, bloated, and struggling to eat foods that once brought comfort.

• MCAS (Mast Cell Activation Syndrome): my body can overreact to harmless triggers — foods, scents, or temperature changes — causing hives, swelling, or even anaphylaxis without warning.

• Chronic Hypotension: low blood pressure that leaves me dizzy, foggy, and drained.

• Chronic Dehydration: because of how connective-tissue and autonomic dysfunction affect fluid balance, people with EDS often struggle to stay hydrated no matter how much water they drink. Electrolytes help, but the dehydration is physiological — not neglectful.

Each condition on its own is challenging; together, they create a body that’s constantly negotiating stability.

“My autonomic system forgot how to be automatic — so now I have to consciously manage what most people’s bodies do effortlessly.”

When “Just Work Out More” Isn’t the Answer

For most of my life, I thought my exercise intolerance was just me being “out of shape.” I was told to push harder, work out more, drink more water. But the thing is — that wasn’t true.

No matter how hard I tried, my body would crash. I’d get dizzy, lightheaded, nauseated, and overwhelmed by pain that lingered for days afterward. I thought everyone lived that way — constantly sore, constantly exhausted, always pushing through headaches, dizziness, and discomfort. But they don’t.

And yes, dehydration was part of the problem — but not in the way people assumed. For those with EDS and POTS, dehydration isn’t from lack of effort; it’s a symptom of our physiology. Our bodies can’t retain fluids properly, and our blood vessels don’t constrict as they should. No amount of water could fix that.

“I spent decades apologizing for symptoms that were never my fault — I just didn’t have the right language to name them.”

Living in Constant Survival Mode

Chronic pain trains the nervous system to stay on high alert, and autism compounds that hypervigilance. The sensory system doesn’t just process the world differently — it feels it differently. Every sound, texture, or light can amplify pain and fatigue.

That’s why so many autistic and EDS individuals live in a permanent state of fight, flight, or freeze. Our bodies aren’t malfunctioning; they’re overprotecting. When the connective tissue can’t support the body properly, the brain compensates by tightening muscles, increasing stress hormones, and scanning constantly for danger.

It’s survival — not choice.

Managing the Unmanageable

Living with EDS and its co-morbidities means every day is a careful balancing act between pushing and protecting. Healing isn’t passive — it’s an ongoing conversation with my body.

I do aquatic physical therapy two to three times a week when I can, because the water supports my joints while letting me move freely. It’s low-impact but strengthens my muscles and helps my cardiovascular system without triggering a flare. When I’m not in the pool, I aim for light cardio walks of one to three miles and try to lift weights several times per week to maintain muscle tone and joint stability.

These aren’t vanity routines — they’re survival ones. If I stop moving, my joints destabilize. If I overdo it, I crash. So every workout becomes a dialogue: What can my body handle today?

Because of low hunger drive, absent appetite, and chronic nausea, I use an app to track calories to prevent unintentional weight loss. Eating isn’t just about food — it’s structured self-care that keeps me functional.

And I go to therapy every other week, because when you live inside a body that constantly demands negotiation, you need a place to process the emotional weight too. Talking helps me release the guilt, fear, and exhaustion that come with chronic illness.

“Therapy keeps my mind flexible when my body can’t be. Movement keeps my body alive when my mind feels heavy.”

None of this is easy. Some weeks I’m strong; others I’m surviving hour by hour. But each step — in the water, on the trail, or in the therapist’s office — is a reminder that I’m still here, still adapting, still moving forward with purpose.

The Diagnosis That Finally Made Sense

When my neuropsychiatrist mentioned hypermobility, something clicked. I thought about all the sprains, the fatigue, the bruises that appeared out of nowhere, and the deep aches I’d brushed off as “normal.” I thought about how often I felt like my body and brain were out of sync — my mind racing while my body lagged behind, or vice versa.

That single moment of recognition reframed my entire past. It explained the chronic pain, the joint instability, the exhaustion after simple tasks. It even explained why sensory overload felt like physical injury — because in a way, it was. My body and mind were both running emergency protocols, just trying to survive.

“For the first time, I wasn’t broken — I was understood.”

Looking Back with Compassion

I look back now and see how much of my life was shaped by this unseen battle between my connective tissue and my nervous system. The anxiety that doctors misread as psychological was actually physiological. The fatigue that looked like laziness was the cost of existing in a body that never felt safe.

I used to think I was weak for not being able to keep up — now I know I was fighting on multiple fronts. My body was working overtime to hold me together, even as my mind tried to make sense of it all.

Living with the Body and Mind That I Have

Living with hEDS, Autism, ADHD, and Major Neurocognitive Disorder means existing at the crossroads of neurology, genetics, and survival. But it also means I’ve learned to read the language of my body — every ache, every tremor, every flare. They’re messages, not malfunctions.

And now that I finally understand them, I can live with more compassion, more grace, and more intention than ever before.

If this story resonates with you I hope you’ll stick around, follow my journey @thechronicallyresilient.

And as always, Stay Resilient ❤️‍🩹

When the Wild Becomes a Mirror: Hunting With a Brain Injury, POTS, and Fading Senses

By Frankie — Disabled Air Force Veteran | Chronic Illness Advocate | Medical Nerd

There’s something about watching the sun crawl across the eastern Montana sky that reminds me I’m still here — still fighting, still learning what this new version of my body can and can’t do.

This year’s antelope hunt wasn’t just about the chase. It was about reckoning — with my body, with my brain, and with the stillness that comes after realizing even the wild doesn’t quiet the storm inside you anymore.

Between the Wind and the Wild: When Your Eyes Aren’t Your Own

“It’s like trying to hold still in an earthquake — my vision feels shaky, like I can’t anchor to the world long enough to aim, to trust my body.”

The rolling hills of eastern Montana are gentle — slow sloping, wind-laced, and dotted with sage — but even walking them feels like scaling a mountain. The moment there’s any incline, my heart rate spikes to nearly 170 bpm. I live with POTS — and the unpredictability of how my body responds means I never fully know if it’s going to cooperate.

And when my heart is pounding, my vision starts to go with it.

My brain can’t focus the way it used to. Objects feel “shaky,” and no matter how much I steady my breathing or brace my rifle, the world won’t hold still. Even spotting an antelope — something I could do in seconds a few years ago — becomes almost impossible through a scope that never stops quivering.

When my heart races, my ability to see declines. But that’s not by accident.

Why Vision and POTS Are Linked

POTS (Postural Orthostatic Tachycardia Syndrome) forces your heart to work overtime just to keep blood circulating, especially when you stand or exert yourself.

When your heart rate skyrockets:

• Your body diverts blood from “non-essential” systems (like vision and digestion) to protect vital organs.

• Result: Blurry, shaky vision and poor visual focus.

• Add in brain-injury-related visual processing issues, and it becomes a full-blown sensory bottleneck.

Losing My Senses, One Step at a Time

“Hunting demands silence. But how do you stay silent when you can’t hear yourself?”

I can’t wear my hearing aids while I hunt — sweat from POTS could fry them, and they’re not waterproof. That means I enter the field unable to fully hear my surroundings.

Every step becomes a gamble:
Am I too loud? Am I missing something? Am I safe?

I rely on my husband, who walks in front of me — his footsteps become my guide, his silence my cue. I use all my energy to keep my eyes on his heels, just trying to stay quiet and balanced in a world that now feels foreign in both sound and sight.

Even speaking becomes complicated. I can’t tell how loud I am, and sometimes I accidentally whisper too loudly — breaking the stillness we’ve worked so hard to create.

“When your body becomes both the barrier and the battleground, even whispering is a test of control.”

The Moment I Knew the Hunt Was Over

We hunted for four days — two trips out per day. I pushed hard, watching the sunrise in awe, enduring windburn on my face and fatigue in open defiance of my symptoms. But on Tuesday morning, as we crested a hill in search of a herd we’d been tracking, it hit me like a wave:

I had nothing left to give.

My brain fogged. Speech processing started crashing. Noise, balance, breathing — every system in my body was begging me to stop. The antelope were still out there, but I wasn’t.

So we called the hunt.

I walked away empty-handed — but not empty-hearted.

This Body Still Belongs Outside

“Grief lives here alongside grit. I hate what I’ve lost. But I love that I still go.”

Hunting isn’t just something I do — it’s something I share. My husband and I rebuilt parts of our relationship in these landscapes. I learned to slow down again, to listen to the wind and let nature carry the weight of what I can no longer hold.

I didn’t grow up thinking “someday my brain injury will affect my ability to aim a rifle,” but here we are. My MRI shows tissue damage and encephalomalacia — silent, structural reminders of what gamma knife surgery cost me. And yet:

I am still here.
I still show up.
I still learn new ways to live.

Because being alive isn’t about bouncing back.
It’s about adapting forward.

The Damage You Can’t See

My MRI shows:

• Encephalomalacia and gliosis: Brain tissue damage and scarring from radiation and A/V malformation.

• Visual processing issues: From tissue loss in areas related to perception and eye tracking.

• Major Neurocognitive Disorder: Diagnosis stemming from these changes.

That’s why I’m starting occupational and speech therapy — to regain even a sliver of control over what’s been lost.

Ending on Purpose

I used to think pushing through pain meant I was strong. That ignoring my limits made me worthy.

Now I know this:
Honoring my limitations is how I stay in the game.

I left the wild empty-handed this time. But I walked away with the kind of pride you can’t hang on a wall — the kind that exists in every breath I didn’t give up, every step I took beside the man who taught me to love hunting again.

I’m not done. I’m just learning how to hunt a different way.

If this resonates with you, and you’d like to follow my journey of neurodivergence, chronic illness, healing, and everyday resilience — you can follow me on social media @thechronicallyresilient

And as always, Stay Resilient ❤️‍🩹