It's not phantasmagoria, it's Ehlers-Danlos Syndrome

((Subtitle thanks to stynalane))

Dear faery glen,

As you may have noticed I am less keen on writing about myself these days. I sometimes end up exposed to those whose eyes I’d rather not have cast my way. Some may argue that this is the price of admission to having online platforms — and even though that is ultimately and unfortunately true, I have been on a mission to heavily curate my online experience so that I am not subjected to a term describing random acts of senseless digital violence that (I think?) I coined in 2018: “drive by shoutings.” Or people who believe they know you better than you do, and have all kind of unsolicited advice. I wish not to be polluted by either. I am a delicate yet robust ecosystem. Think of me as holding a tiny megaphone nestled under a faraway mushroom, inches away from the flower I am about to take a nap in. The location is a secret, and it is protected by a hulking, ferocious wolf.

But I have chosen to write about my illness because receiving this diagnosis so very pivotal for me, the same meteoric proportion of my late autism diagnosis - a space rock wrapped in glitter and ache that suddenly bursts through my ceiling (or was it there all along? Yes, the latter.)

Something that has been with you your entire life but remained shrouded in the nebulousness of ouch, crick, crack, bruise, gasp, wobble, cramp, fog, buzz, hunch, haunch, bend, break, rip, tear, wail, bleed, undulate, wither, seize, ripple, no, I can’t, I can’t, I can’t — under capitalism, under ableism, under masking, under the umbrella of ‘function’ — this becomes surprisingly easy to dismiss as phantasmagoria. A string of wicked imaginings that create a garland of so-called ‘disease.’ Receiving a diagnosis takes the illness from the mind’s eye to the canvas, and the vision comes alive. Other people can see it now, too. It has a specific set of shapes and colour palette. The picture is rendered.

This is life saving.

So with this essay I hope to save my own life a little more and perhaps anyone reading who also endures their own unravelling/mystery/glitter and ache/peeling back the spicy layers/looking into the ajna of truth/noticing patterns and trusting in the wisdom of the body.

Here goes. (Deep breath.)

On May 26th, 2026, just as the awareness month of this particular ailment came to a close, I finally received a name for my nebulous constellation of symptoms that have been plaguing my weary body for over a decade:

To be able to put a name to the cornucopia of symptom-Dwarves that bust down the door to my cozy Hobbit hole is something of mythic proportions. Of legend. A veritable Tolkien epic. A holy grail I never thought I’d grasp in my tiny hands that are wrinkled before their time.

For months I’d been lurking in hEDS forums, absorbing the riot of anguished voices from the abyss, matching up my experience with theirs — but despite my spirit’s apparent unbreakable nature (thank you, spirit. No really, thank you) which lured me towards the finish line, I forever and ever will likely hold some degree of isolation to my chest, a sense that I do not belong. A suspicion of being and imposter. A great big fuckin’ faker. That’s what happens when you search for an endless stretch of time with no answers. You begin to deeply doubt your own compass.

In the exhaustion that plagues isolation, I almost did not make it to this threshold. I almost gave up. I almost had no choice but to live in the hollow shell of mystery, my own looping thoughts and queries echoing back to me endlessly within the dark sphere, driving me mad. I almost listened to the voices from friends and family who supposedly had my best interests at heart that said, “Why do you even need a label, anyway?” Or, “Have you ever considered that this may all just be anxiety?”

Almost, almost. But not quite. Cue the Eye of the Tiger guitar riffs — there must have been a fight song playing in a corner of my psyche that I was not quite aware of — as despite it all, I persisted. To quote Buffy The Vampire Slayer, “I commit! I’m committed. I’m a committee.” Truer words (about me) have never been spoken.

However, and I say this with the kind of flat affect that only a sardonic, autistic Capricorn is capable of, I am so fucking over it now. I’m done. From here on out, it better be cartoon-like feasts on white linen then naps in gentle meadows (no ticks! We can’t handle Lyme disease on top of all this!)

“There is no end
To what a living world
Will demand of you.”

―Octavia E. Butler, Parable of the Sower

“My body turning on me years before it was meant to, and right in synch with the public, might just be the most important story of my life.”

—Lena Dunham, Famesick

Some people are rubber, some are glue. Evidently, I am the latter.

Survival states are powerful, powerful things. Upon reflection, I am always absolutely baffled by the sheer force of mine. Survivalism is the act of preparing for an emergency: natural disaster, societal collapse, or other crises. This is what preppers do (and maybe what we should all be doing? That’s another essay.) Survivalism can also exist in the body — a perpetual state of hyper-vigilance, of knowing that collapse is coming or that emergency is the roiling ocean beneath the dingy of your beating heart. When survival is not guaranteed, and therefore you cannot climb the pyramid of needs into anything more comfortable, all of your nervous system’s resources flood to survival. In youth, there’s likely zero awareness of this and how depleting it really is. But it can, and will, buoy you for an exceptionally long time. In many cases, decades before ultimate collapse.

In Lena Dunham’s Famesick, she discusses a similar arc. Messages of malaise were ferried years before more major breakdowns forced her off the conveyer belt of productivity and into a sick bed — but these messages, like mine, were indistinct, hazy, vague — indicative, perhaps, of a one-off…nothing more. But then one-offs become two, two become four, four become eight — and then suddenly you are mired in diseased cell division. You are Alice tumbling down the rabbit hole.

But you see, over this harrowing decade, where my body said no, fuck off, absolutely not, no way, but my world remained just as — if not more — demanding than it had ever been, I went down all the wrong rabbit holes.

First I thought it was MS, because I have neurological symptoms. Then I thought candida, celiac, leaky gut and IBS because of all of my GI issues. Then I thought it must be B12 deficiency, because all of the above and more. Then came the (seemingly requisite) fibromyalgia diagnosis — after all, I am a woman in pain. The pain was always there. Then came TMJ and hearing problems. Then came the absolute crushing fatigue — and I truly mean crushing, as though I in particular had ten times the gravity of earth on my bones, my body waded through some kind of thick molasses instead of air, and my brain worked in fits and starts like a breaker panel that continuously shorted out. Eventually for this particular romp I was diagnosed with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis in 2023. A friend recently reminded me that I sent him a voice note around that time saying, “I believe I am preparing to die.” I was not suicidal, but my body had shut down so badly that there was only a flicker of a flame left in my soul. One hearty gust of wind and I’d be extinguished forever.

Many symptoms have been like the Koolaid man, busting through the living room wall and screaming, “OH YEAH! You want some of this?” while I am cowering in the corner shivering. Others have approached slowly like a ghost train in the far distance, its eerie horn wailing in the mist, my forehead damp with anticipation. Others still have been like the demented Nine Inch Nails-like rave sounds of an MRI, driving me to the point of insanity and then suddenly disappearing forever as if they’d never been. But in no Price is Right game ever invented would I have thought that tingling feet, beeping ears, crowded teeth, crushing fatigue, thoracic outlet syndrome, astigmatism, migraines, a body that feels and sounds like Rice Crispies, horrible gastritis attacks, being sensitive to medications, blood pooling and chronic pain would all be connected. (These are not all my symptoms whatsoever. It’s a small sampling of what is a pretty impressive platter.)

However, about a month before diagnosis I heard this little catchphrase which sums it all up perfectly:

This makes sense if you consider the body as a whole. But many people — myself included, and all but one of the medical professionals I’d seen over my harrowing decade of searching — don’t think holistically. In diagnosing hEDS, they don’t consider what they can’t see, what’s on the inside. They think: is this person extremely bendy? Could they audition for Cirque Du Soleil? Did they impress their peers by doing ‘party tricks’ of contortion when they were young? Are they like Gumby?

And that’s the thing — many are. But some of us are only a little bendy. Some of us are like Gumby in the sense that we are shapeshifers, but mostly within the perfect inky darkness of our organs, muscles, fascia, viscera. It wasn’t until I’d almost given up hope of ever finding the true label that I discovered being bendy wasn’t the same thing as being hypermobile. That being said, the Beighton Scale still does matter for diagnostic criteria and I squeaked by — but it’s not even remotely the end of the story. If it were, we’d not be sick. We’d just be siiiiick in the rad way, shreddin’ the gnar with the bros, hangin’ ten.

(This is, and always will be, my favourite interview of all time.)

Unlike many of my autistic peers, I’ve not really suffered from inflexible thinking or feeling. That’s not to say I don’t experience intense preferences, or feel the floor drop from beneath me when a sudden change occurs, but I’ve always been deeply understanding and empathetic which I believe requires a lot of inner flexibility. The mould of your mind and heart must be able to take on new and unfamiliar shapes, hugging the pain and suffering of another, understanding it even without necessarily having experienced it. To be empathetic is to be fluid, a body of moving water — in stagnant pools is where judgement and resentment fester. A fluid state is a shapeshifting state and a shapeshifting state is hypermobile. It is not fixed.

Empathy is a driver for love, and of course in and of itself is not a bad thing. Love is the reason for the universe, after all — for life itself. But my good friend Sarah Faith Gottesdiener reminded me the other day that part of what makes us sick is overextension — especially toward those who are inflexible in themselves. Using the diseased cell division metaphor above, it is not a singular experience of overextension that causes collapse, but when two become four, four become eight, eight become sixteen…and on it goes.

In her Famesick memoir, Lena Dunham talks at length about people-pleasing: something she’d always done, but upon becoming famous felt like a requirement. The sudden and ceaseless influx of requests and favours seemed mandatory. I, too, experienced this when my art career became stratospheric. The word no was ignored like an invasive species until it utterly obliterated the landscape. ‘No’ inevitably became the only word I could say when my health pulverized and, as my friend Sophie Strand says, turned into a compost heap. I’d unfurled my hypermobile heart to all others except myself.

The so-called ‘faulty’ connective tissue of those of us with hEDS has allowed for some extraordinary feats of capacity. It is almost as though, due to this deeply porous and pliant inner webbing, that we are far more able to feel immense amounts of empathy, compassion, the desire to heal and enfold others, to enfold it all under our ever-expanding ribcage. This elastic vehicle of consciousness houses so much, arguably too much — because on the flip side, our skin is so very tender and we easily bruise, split, bleed…bearing the wounds of our love.

What happens to us does not bounce off like rubber, it sticks to us like glue. It becomes part of the cosmic webbing forevermore. This, in part, is why I believe we hit a wall and collapse. Why we can seem healthy for a long time and then tumble down the rabbit hole. Our hypermobile hearts are like stars gathering heat and mass until the supernova. The vibration, the desperation for survival, it all culminates. It is entropy.

It is inevitable. It is deeply, painfully, human.

There is no part three to this yet, because that is what I am living now. I reached the threshold deeply scathed, with exhaustion I cannot begin to describe. To be gaslit and dismissed endlessly, to go down all the wrong rabbit holes, to find nothing but dead-ends, to go to sleep night after night encircled in somatic mystery, to work so tirelessly on cultivating higher and higher levels of self-compassion in a system that does not offer it to you — oh yes, that is exhausting. Survivalism is just that. But it brought me to the finish line. My spirit is unbreakable, my hypermobile heart is infinite and a brand new chapter has just been ushered in. One of absolute tenderness, feasts and naps with beasts.

Until next time,

Love and wolves.

D xx

P.S. My latest and most beautiful creation is still up for grabs:

The Fertile Void Tarot ~ a 72 card tarot deck and 300 page illuminated magazine. I am so proud of her and we are halfway through production! Jump in while you still can (and also receive a beautiful velvet tapestry).