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 ❤️‍🩹

Navigating a Complex Diagnosis: My Journey Through Rare Disease, Chronic Illness, and Advocacy

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

Hi, I’m Frankie — I’m 33 years old, a disabled Air Force veteran, and someone living with multiple complex medical conditions. I’m sharing my story not for sympathy, but in hopes of helping others feel seen, advocating for change, and holding space for anyone navigating a healthcare system that doesn’t always listen the first time — or even the tenth.

This blog is my way of organizing the chaos. I use tools like AI and technology to help structure my thoughts, because as someone with autism, ADHD, and a major neurocognitive disorder, communicating clearly and logically has become a real challenge. Masking is something I do well — on the outside, I may look "put together," but beneath that is a network of alarms, calendars, checklists, detailed notes, and the support of my husband.

Today, I want to talk about one of my most urgent health issues — undiagnosed and untreated hyperparathyroidism— and how it slipped through the cracks of the VA system for over two years.

In 2023, the VA flagged elevated calcium levels in my labs and entered a referral for Endocrinology. I had no idea. No call. No message. No follow-up. Nothing. I didn't find out until nearly a year later, when Care in the Community called me to ask if I was ready to move forward with my endocrinology appointment — a referral I never knew existed.

This should have never happened.

In August 2024, I finally had my parathyroid hormone (PTH) level checked — and it was elevated at 87, a result that should have immediately prompted further investigation. I was referred again to Endocrinology, but they declined to see me because my calcium levels looked “normal.”

Here’s what they missed: elevated PTH with normal calcium can indicate Normocalcemic Primary Hyperparathyroidism (NPHPT). It’s real, it’s documented, and it’s serious. But it requires a provider who understands the nuance — and who’s willing to dig deeper.

I’ve become symptomatic. Yes, I have fatigue from Ehlers-Danlos Syndrome, but this is different. Since August, my energy levels have dropped sharply. My sleep is unpredictable and fragmented. I now wake between 2–4 AM every day, even when I’m completely exhausted. My go-to sleep supports — including THC — have stopped working.

I'm scared that this will lead to another major flare. I’ve worked too hard to stabilize. I can’t afford to lose access to treatments, especially medications like those for ADHD, which my psychiatrist won’t prescribe if I start losing weight again.

From Air Force Medic to Full-Time Patient

Before I became a full-time patient, I was a medic in the Air Force. For seven years, I thrived in high-pressure medical environments, trained and mentored junior medics, and earned the respect of my colleagues. Medicine wasn’t just a job — it became my language, my special interest, and my safe place as an autistic person.

That experience shaped me into the kind of patient I am today — proactive, hyper-organized, and relentless when it comes to advocating for myself. Not because I think I know more than my doctors, but because I’ve learned the hard way that if I don’t stay on top of every detail, I’ll fall through the cracks.

And I already have.

The Day My Instinct Saved My Life

In early 2019, I underwent Gamma Knife radiation surgery to shrink a massive cerebral arteriovenous malformation (AVM) that carried a 78% lifetime risk of rupture. About a week later, I noticed swelling and pain in my right arm where I’d had an IV. The NP said it was probably just phlebitis. My heart rate was elevated, but they weren't concerned.

Still, something didn’t feel right.

I went to the ER. They found a thrombosis in my basilic vein and a highly elevated D-dimer. A chest CT revealed something terrifying: bilateral pulmonary emboli in all four lobes of my lungs. I was completely asymptomatic. No chest pain. No shortness of breath. Just a gut feeling and a racing heart.

If I had gone home instead of trusting my instinct, I might not be here writing this.

AVM Diagnosis: Another Case of “It’s Probably Nothing”

Backtracking a few months — in late 2018, I began experiencing pulsatile tinnitus, dizziness, and vertigo. It could have been anything. Still, I mentioned to a trusted physician mentor that I’d done some research and wondered about an AVM. He agreed it was worth looking into. He ordered the MRI.

That scan revealed a Spetzler-Martin Grade 5 AVM in my posterior corpus callosum — one of the rarest and most dangerous types. Most people don’t know they have an AVM until it ruptures. Mine didn’t. That MRI may have saved my life.

The Aftermath: Radiation, Hearing Loss, and Cognitive Decline

Within six months of radiation, I lost hearing in my left ear. Within a year, I lost hearing in my right. By two years post-op, I could no longer work due to memory loss, difficulty with cognition, and executive dysfunction.

Eventually, I was diagnosed with Major Neurocognitive Disorder, Autism, ADHD, and a math disability. I'm now under active neurological evaluation to determine whether the Gamma Knife radiation — which research confirms can cause both cognitive decline and hearing loss — is the root cause.

For years, I begged doctors to help me understand what was happening to my brain. They told me it wasn’t serious. That I was overreacting. That it was stress.

It wasn’t.

Layers of Complexity: A Web of Diagnoses

The deeper you go into my medical history, the more tangled it becomes — but each piece matters. Here’s a brief look at the major players:

• Cerebral AVM (diagnosed 2018, resected 2024)

• Pulmonary Sarcoidosis (diagnosed 2020, in remission with annual PFT follow-ups)

• Hypermobile Ehlers-Danlos Syndrome (diagnosed 2022)

• POTS, Dysautonomia, Orthostatic Hypotension

• Gastroparesis, Chronic Nausea

• Mast Cell Activation Syndrome

• Epilepsy Partialis Continua (controlled on Keppra)

• Major Neurocognitive Disorder

• Autism, ADHD (Inattentive Type), PTSD

• Bilateral Sensorineural Hearing Loss

• Military Sexual Trauma Survivor

I use a central port to self-administer fluids twice per week to stay hydrated and prevent fainting. My medications and therapies are tightly coordinated and managed across multiple specialists.

But even with all of this, my recent experience with hyperparathyroidism shows how easy it is for critical care to be missed.

Where I Am Now — And What I Need

Right now, I need a thorough evaluation of my parathyroid function. I want answers, not assumptions. I want an Endocrinologist who understands that normal calcium doesn’t rule out parathyroid disease. I need someone who will look at my full history, not just a snapshot.

This isn’t just about one lab result. It’s about an entire system that repeatedly fails to see the bigger picture — and patients like me, who don’t fit into neat diagnostic boxes.

Thankfully, I’m still fighting. I have providers who listen. I have a neurologist who’s taking my cognitive issues seriously. I’m hopeful. But I also know that without constant advocacy — from me, from my support system, and from people like you — none of this moves forward.

For Anyone Reading This

Whether you're a fellow chronically ill person, a caregiver, a provider, or just someone trying to understand — thank you for reading. If you take away one thing from this, let it be this:

🟣 Listen to your body.

🟣 Advocate even when you're tired.

🟣 Trust your instincts — they might just save your life.

Stay tuned for a weekly Blog, Mondays at 1500 (3PM MST)

Stay resilient,

Frankie