Holding It All Together: hEDS Awareness Month

There’s a particular kind of irony to living with a body that can partially dislocate while the world still expects you to hold everything together.

It’s Hypermobile Ehlers-Danlos syndrome Awareness Month, and I, my family and many of my clients are very, VERY aware.

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Not just because I have hEDS.

Because all three of my biological children do too.

Because many of my clients do and have sought me out particularly for my embodied understanding albeit everyone experiencing their bodies somewhat differently.

Which means I now get to watch (and often intervene), in real time, the collision between inherited connective tissue disorders and a medical system that still struggles to believe people about their own bodies — especially when those people are neurodivergent, larger-bodied, sensitive, complicated, intense, or difficult to categorize neatly. Or woman presenting. Because when cis/het/straight/normative men feel pain, the world drops everything.

As a therapist, I spend a non zero amount of time noticing something clinically that I think the mental health field is still profoundly underexamining:

What happens psychologically when a person spends decades being systematically taught not to trust their own body. When their own body is physiologically causing the anxiety.

I spent most of my life assuming everyone hurt the way I hurt.

That everyone’s joints burned. That movement hurt.
That everyone got dizzy standing up (oh the irony that so many POTS folks do better with the compression of a slightly larger body).
That everyone felt physically exhausted by simply existing.
That everyone had to consciously negotiate with their body every single day with every single task.

I genuinely believed there was just something weak about me.

Something lazy.
Something defective.

Because that’s what I was told.

I grew up in a larger body and that became, from day one, the explanation for nearly everything (and also why I believe my neurodivergence was so easy for people to overlook).

Not connective tissue disorders.
Not autonomic dysfunction.
Not chronic pain.
Not sensory overwhelm.
Not exhaustion from a nervous system constantly compensating for instability.

Nobody noticed that, growing up in Los Angeles, it was a little weird that my temperature regulation was so terrible that I had difficulty getting to school because I couldn’t move my five year old body from in front of the heater at the bottom of my mother’s bookshelf tucked neatly into the moulting. I could be found there most mornings with a blanket over my head keeping the artificial heat in. Again, this was Los Angeles.

Just:
lazy.
weak.
fat.

And “fat,” in our culture, is rarely presented as a neutral descriptor, though it is one. It becomes moralized. A character judgment disguised as a medical opinion. Especially in the 80’s and 90’s.

If you’re in pain in a larger body, many people do not ask what is wrong.
They ask why you are failing at bodyhood correctly.

Clinically, I know this matters enormously.

Because when children repeatedly receive the message that bodily distress is exaggeration, weakness, attention-seeking, or personal failure, many do not become less dysregulated.

They become less able to identify dysregulation accurately.

They dissociate from interoception.
They override pain signals.
They intellectualize distress.
They perform competence while physiologically collapsing underneath it.
They continue activities they feel they should do instead of listening to what their body can do. Until it falls apart.

And then, years later, those same individuals often arrive in therapy believing they are “bad at coping,” when in reality they may have spent decades surviving levels of physiological stress other people were never asked to normalize.

So I learned to override myself. But it can be just as devastating for those who, as children, do not or can not override their own signals. They truly do not function outwardly like other children and are often ostracised, othered, and made fun of. Even by family who doesn’t understand and by doctors who were never taught they don’t know everything or how to interact with a patient whose presenting problem isn’t one they immediately recognize.

I learned that pain was not meaningful information.
I learned that exhaustion was a personal failure.
I learned that if everyone else seemed capable of functioning, then I simply was not trying hard enough (fat, lazy, stupid (also where did stupid come from? I had an excessively high IQ. Just goes to show that we group things together without reason).

Meanwhile my body was quietly collapsing under the weight of being misunderstood.

I competed equestrian through concussions that were never evaluated because getting back on the horse was treated as character. That horse’s name was Wyatt.

I danced for years on hips that, it turns out, do not actually fit together correctly. Including the one run of a show where a well choreographed stage fight left me so bruised the lymph nodes across my body were swollen from trying to clear the internal blood back through my system. And there were the broken bones. The ones I walked on, used, ignored. Because certainly I should just continue. The show must go on. It always did.

I drove my body into the ground over and over because nobody taught me how to recognize pain as a signal worthy of care instead of something to override.

At one young point, my mother even had me evaluated for CIP, the disorder where children cannot feel pain.

Which is ironic.

Because I could feel pain.

Constantly.

The real issue was that I had been taught not to interpret it as important. I couldn’t weed pain from “not pain.”

And she was taught that too.

By doctors.
By culture.
By a world that rewards dissociation from the body and calls it resilience.

So instead of learning embodiment, I learned endurance.
Instead of interoception, I learned performance.
Instead of rest, I learned how to abandon myself professionally.

I was diagnosed first with Postural Orthostatic Tachycardia Syndrome in my early 20’s after recovering from my eating disorder did not prove to change that little pesky issue when you lose all your senses, get dizzy and sometimes pass out when you stand up. Despite being at a healthier weight from the depths of my ED, my body, turns out, liked the compression of a higher weight.

Then Mast Cell Activation Syndrome. Symptoms emerged quite young but I wasn’t diagnosed until I was quite literally allergic to my own pregnancies and after 11 doctors, I spent enough time in medical journals to figure out I had autoimmune progesterone disorder. I found the only doctor in DC who had heard of it at the time and in trying to rule it in or out, she put together the rest of the MCAS.

But it still took years — years — before anyone connected the larger picture.

Before anyone looked at the constellation instead of the individual stars.

Before anyone recognized Hypermobile Ehlers-Danlos syndrome. Which happened after a certain athletic endeavor gone badly and left me unable to do much other than lay in bed for many months. And I am stubborn. I had young children. I had no choice.

Despite all the symptoms going back to early childhood, nobody ever put it together until the one pain doctor I was referred to after exploratory surgery did not show what was expected.

And honestly?

That triad — POTS, MCAS, and hEDS — became my gateway drug to discovering my own neurodivergence.

Because once I started reading the research and listening to other people living inside bodies like mine, I began realizing how many of us shared not just connective tissue disorders, but autistic traits, ADHD traits, sensory differences, demand sensitivity, interoceptive differences, intensity, burnout, masking, and lifelong experiences of feeling fundamentally out of sync with the world around us.

Clinically, we know there is tremendous overlap and I am thankful there are researchers with lived experience interrogating the connection.

I suspect many neurodivergent people with connective tissue disorders spend years living in nervous systems caught between sensory amplification and chronic invalidation.

The body says:
Something is wrong.

The environment says:
You are overreacting.

And over time, that disconnect can produce profound confusion around self-trust, bodily autonomy, boundaries, fatigue, hunger, pain, and even relational safety.

I see this constantly in therapy:
people who can accurately identify the emotional states of everyone around them while remaining almost entirely disconnected from their own physiological needs. And capitolism negates their willingness to deeply explore this disconnect because once you find it, then what? Is a person to simply honor their physiological needs while ignoring that we live in a society that is only willing to keep alive those who contribute in expected ways?

People who have become exquisitely attuned to external expectations while barely recognizing internal collapse.

People whose “high functioning” is often just prolonged survival physiology.

Suddenly my entire life reorganized itself into a pattern instead of a pile of unrelated failures.

The sensory overwhelm.
The exhaustion.
The hypervigilance.
The need for recovery after ordinary life tasks.
The way my nervous system seemed permanently calibrated for “too much.”
The deep feeling that everyone else had received an instruction manual for being human that I somehow missed.

It wasn’t laziness.

It was a nervous system and body working extraordinarily hard to survive conditions nobody recognized correctly.

And like many adults with hEDS, I was not diagnosed until my 30s, after my body’s ability to compensate finally began to fail in ways I could no longer push through.

When simply getting out of bed became impossible without screaming. After all pain medications had been tried (and I hate pain meds).
When functioning stopped being something I could brute-force through sheer willpower and adrenaline.
When the carefully constructed architecture holding my life upright started collapsing all at once.

There is grief in that kind of late diagnosis. There is grief in having to manage a condition that would take all your money in a world where doctors simply cannot all take insurance and deliver patient care. Where only those who work in certain ways and settings have access to care.

Grief for the child who thought pain was a moral failure.
Grief for the teenager who thought everyone felt this bad.
Grief for the adult who spent decades trying to earn humanity through endurance.

And there is rage too.

Rage at how many people with hEDS are missed because they do not fit the “right” presentation.
Because they are larger-bodied.
Because they are autistic.
Because they are ADHD.
Because they are women.
Because they are Queer.
Because they are mentally ill.
Because they are too articulate.
Because they are not articulate enough.
Because they learned to smile while dislocating.
Because dislocation and dissociation are overcoupled.

As a therapist, I think often about the psychological consequences of growing up in a body nobody interprets correctly.

Especially when you are repeatedly taught that your internal reality is inaccurate.

That kind of chronic invalidation changes nervous systems.
It changes attachment.
It changes interoception.
It changes self-trust.

You stop asking:
“What does my body need?”

And start asking:
“How convincingly can I pretend not to have needs at all?”

That is not resilience.
That is survival.
And then you finally let someone in, let them help you, after the trauma of what it meant as a child to ask for help. And sometimes it goes well. And sometimes it does not.

And yet, despite all of it, there is something extraordinary about the hEDS community.

The creativity required to survive.
The dark humor.
The adaptation.
The tenderness people develop toward one another after years of disbelief.
The instant recognition when someone else says:
“Oh my god, me too.”

My children will grow up with language I did not have.
Frameworks I did not have.
Awareness I did not have.

And while I cannot give them perfectly functioning connective tissue, I can give them something else:

The knowledge that pain is real even when others minimize it.
That bodies are not moral projects.
That needing support is not failure.
That being disabled is not the same thing as being broken.
That they never have to earn care by collapsing publicly first.

So yes.

It’s hEDS Awareness Month.

And I am very aware.

Aware of every staircase.
Every flare.
Every joint.
Every physician who still dismisses complex chronic illness.
Every physician who actually hears me.
Every moment my body asks for negotiation instead of assumption.

But I am also aware of this:

Bodies like ours are not failures because they require care.

And people living inside complicated bodies deserve lives larger than mere survival. And sometimes our bodies collapse and our minds, like today, write things that reach people. Help people. So in an ongoing theme, you are not alone. Neither am I.

Breaking The Frame is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.