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 Wires Cross: Living with Autism, ADHD, and Major Neurocognitive Disorder (Post-Radiation Brain Injury)

By Frankie — Disabled Air Force Veteran | Chronic Illness Advocate | Social Scientist

Living with autism and ADHD is already complex. The constant juggling act between sensory overwhelm, executive dysfunction, and social decoding takes a tremendous amount of invisible effort. But when you add Major Neurocognitive Disorder (MND) — the medical term for dementia — caused by radiation-induced brain injury after Gamma Knife surgery, the wires of my mind don’t just cross — they sometimes go completely dark.

Understanding the Overlap

Autism and ADHD alone make life a constant negotiation between ability and exhaustion. For me, that meant years of masking — forcing myself to appear “normal,” pushing through sensory chaos, scripting conversations, and maintaining an image of competence even when my brain was on fire inside. But when I developed MND, masking became impossible.

Major Neurocognitive Disorder is often associated with aging, but it can happen at any age. It’s essentially dementia, caused by damage to the brain. In my case, it was a delayed consequence of Gamma Knife radiation used to treat a cerebral arteriovenous malformation — a rare tangle of blood vessels in my brain. What saved my life also fundamentally changed it.

Losing the Words — and Pieces of Myself

There are large chunks of my memory that are simply gone. I can’t recall moments that once shaped who I was. I struggle to find words mid-sentence, my thoughts evaporating before I can anchor them. Sometimes I lose track of what I’m saying entirely.

Conversations that used to feel natural now require enormous concentration. I can’t always interpret tone or filter background noise, and complex instructions leave me frozen. I get confused easily, lost in places I used to navigate without thinking. And every time it happens, I feel a pang of grief — not just for what I’ve lost, but for the people who’ve lost the version of me who could once keep everything straight.

“I used to be dependable — now I’m not, but not at any fault of my own.”

Relationships strain under the weight of my limitations. People assume I’m the same because I still sound articulate, but the truth is, I’m holding things together with fragile threads. My brain works differently now, and no amount of willpower can restore what radiation quietly took from me.

When Masking Becomes Impossible

Before MND, I could still mask my autism and ADHD well enough to survive most social situations. I could prepare scripts, hide overstimulation, and push through burnout. Now, I don’t have that luxury.

The fatigue that comes from cognitive impairment strips away every buffer I once relied on. The filters are gone. My patience for superficiality has worn thin. I say what I mean, even when it’s not what others want to hear. Some call that “difficult.” I call it unfiltered honesty.

“Neurodivergence stripped away my camouflage — but maybe it also stripped me down to my truest self.”

The Loneliness of Not Being Believed

Even doctors sometimes don’t believe me. I’ve become too good at masking my symptoms — at performing competence long enough to pass brief assessments. They see a well-spoken, intelligent adult and assume my brain injury couldn’t be “that bad.” But they don’t see the hours afterward when I crash, disoriented and drained from holding it together.

Being autistic already means living in a world that misunderstands your inner experience. Adding cognitive decline to that creates an isolation that’s hard to describe. It’s a loneliness not just of company, but of comprehension.

The Grief and the Grit

There’s deep grief in realizing that the person I was — the one who could multitask, solve problems, and organize chaos — isn’t coming back. But there’s also resilience in learning how to live differently.

I’ve learned to slow down. To rely on visual aids, notes, alarms, and routines. I give myself grace when I lose words mid-sentence. I find peace in smaller victories — remembering an appointment, finishing a task, making it through a conversation without losing my place.

“This isn’t the life I planned, but it’s still a life worth living — one that demands compassion, creativity, and constant adaptation.”

A Call for Understanding

Major Neurocognitive Disorder doesn’t just happen to the elderly. It can affect people in their 20s, 30s, and 40s — people with families, careers, and lives in progress. It deserves the same level of recognition, research, and empathy as any other neurological condition.

We need more awareness of what it means to live with overlapping neurodivergence and acquired cognitive disability — how it shapes communication, relationships, and identity. I may forget details, lose words, or repeat myself, but I never lose my capacity for love, empathy, meaning and understanding.

So I’ll keep telling my story — even when the sentences come slowly, even when the memories fade. Because somewhere out there, another person is quietly wondering if anyone understands what it’s like when your brain no longer functions the way it once did.

And to them, I want to say: I see you. You’re not broken. You’re rebuilding.

If this story resonates with you, follow my journey @thechronicallyresilient.

And as always, Stay Resilient ❤️‍🩹