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ABOUT ISHLY

For two and a half years, I was told it was stress.

It wasn’t.

This is the long version — what happened, what it cost, and why it turned into a brand instead of a diagnosis I kept to myself.

Stephanie sitting on a low wall at a theme park, laughing, holding a large plush sloth.
A good-ish day. Taken sitting down.
Most of them are.

HOW IT ACTUALLY WENT

Eight steps, and none of them fast.

Nothing here happened in a week. That is the part that is hard to photograph and hard to explain at a party, so here it is written down instead.

  1. 2020

    where it started

    A car accident. The car was a write-off and I walked away without a scratch. Afterwards my body started getting strange, in ways too small to take anywhere.

  2. Oct 2021

    it stopped being subtle

    I woke up feeling drunk, and it did not wear off. I was 31, running my own business and making plans weeks ahead that I kept.

  3. 2021–22

    still survivable

    There were still better days than worse ones. But supermarkets became too much, and walking down a hallway turned into something I had to plan.

  4. 2023

    every day, all day

    The drunk feeling stopped being an event that arrived and passed. It became the thing I woke up into and went to sleep in.

  5. meanwhile

    doctor to doctor

    The same sentence every time, delivered kindly, which somehow made it worse: it’s probably stress. You start out arguing, then you start editing yourself before you speak.

  6. 2024

    a name for it

    Someone finally ran the right tests. Bilateral vestibular hypofunction and oscillopsia. Relief and grief arrived in the same appointment.

  7. after

    and then nothing happened

    A diagnosis does not come with instructions. I had fought for two and a half years to be believed, and never thought about what came after.

  8. now

    it did not get better

    It is not going to. What changed is where I put my attention: I stopped organising my life around the illness and started organising it around my life.

That is the part people underestimate. Not the symptoms. The slow work of being disbelieved by professionals while your own life quietly reorganises itself around something nobody will name.

AND NOW

So this turned into ISHLY.

In 2026 I started reformer pilates. It helps, for a boring physical reason: when your brain is compensating for a broken balance system using your body, a steadier body gives it more to work with. It does not cure anything. Nothing does. It might do nothing for you, and that is completely allowed here.

I still get tired far faster than I used to. I still cannot fit into a day what I once could. The world still bounces when I walk, and I am still working out how to accept a diagnosis I never asked for.

Because the thing nobody prepares you for is not the diagnosis. It is the life around it. The plans that change. The explaining you get tired of doing. The friend who says you were fine last week. The job that assumes every day starts with the same amount of you in it.

There was plenty of material about my condition and almost nothing about that. So I started making it, and it turned into a brand that treats the life as the main event and the illness as the context it happens in.

Stephanie Ish Founder of ISHLY. Dutch, living in Spain, usually outside with my dogs.
2020the year my body started changing the subject
2½years of being told it was probably stress
50+operations since I was four years old
4diagnoses, at the last count
0of them curable
Stephanie outdoors, smiling, in front of tall green plants.
Completely fine-ish. Taken on a good day.
They photograph better.

IN PLAIN WORDS

So what is it that I actually have?

Nobody has heard of it, including most people who have it, so here is the short version without the medical dictionary.

Bilateral vestibular hypofunction

BVH, for short

Deep in each ear sits a balance organ. It tells your brain where your head is and what it is doing. Mine underperform on both sides — that is what bilateral and hypofunction mean between them.

Your brain needs that information constantly and does not have a spare. So it borrows from my eyes and my feet instead, all day, without a break. That borrowing is why a supermarket is exhausting and why tiredness arrives like a dropped call.

Oscillopsia

the world bounces

Normally, when your head moves, a reflex moves your eyes the opposite way so the world stays still. It is the reason you can read a sign while walking towards it.

Mine does not do that properly. So when I walk, the world jolts with every step, like footage from a camera nobody is holding steady. Reading a sign while moving is not really available.

What it is not

  • Not vertigo attacks that come and go — it is constant, and it does not spin.
  • Not motion sickness, and not something more sleep or a better mattress resolves.
  • Not anxiety, though being disbelieved for two and a half years will happily produce some.
  • Not curable. There is rehab and there is adaptation. There is no fixing it.

What it looks like from outside

Nothing. It looks like nothing at all. I look exactly like someone who could have come to your thing.

WHILE WE ARE HERE

Oh — and did I mention?

Because bodies do not take turns. One of these I have had since I was four, one since I was twenty, and one arrived right in the middle of everything else.

  • PCOS, diagnosed at 20Its own long argument with hormones, fatigue, and being told to lose weight by people who have not read the file. Years of practice at not being taken seriously, as it turns out.
  • Chronic ear infections, since I was fourConstant for most of my life, and more than fifty operations along the way. Whether it is connected to what came later is not something anybody has told me.
  • Surgery for precancerous cervical cells, end of 2021Not cancer — cells that would have become it, taken out before they got the chance. It landed weeks after the dizziness started, while I was still being told nothing much was wrong with me.

I list them because this is usually how it actually goes. Not one clean diagnosis with a beginning and an end, but several things overlapping, none of which wait politely for the others to finish.

THE BEST PART OF THE DAY

Mickey, Goofy and Baloe.

Three small white opinions about when it is time to go out. They are the reason the day has a shape at all. They do not ask how I am feeling, they do not need me to be impressive about it, and they are perfectly happy with a walk that turns out shorter than the one I set off to do.

On the bad days they move the whole operation to the sofa and carry on as though that had been the plan.

People assume a chronic illness means a life that shrinks down to appointments. Some of it does. The rest of it is this.

Stephanie on the sofa, cheek to cheek with one of her dogs.
A sofa day. Fully booked.
Baloe, Mickey and Goofy, three small white dogs, sitting in a row and looking up.
Baloe, Mickey and Goofy, entirely convinced it is dinner time.

WHO THIS IS FOR

You do not need my diagnosis. You might know the rest of it.

  • You have been told it is probably stress, by someone with a degree.
  • You look completely fine in every photograph anyone has of you.
  • You have cancelled something and then felt guilty about how relieved you were.
  • You say “I’m fine” because the honest answer takes twenty minutes and a diagram.
  • You have a condition that nobody at work can pronounce, or no diagnosis at all yet.
  • You are building a good life anyway, in a body that will not confirm anything in advance.

Fibromyalgia, vestibular disorders, ME/CFS, POTS, long COVID, endometriosis, autoimmune conditions, chronic pain, migraine — and the people still waiting for a name. ISHLY speaks to the shared part without pretending every condition is the same.

WHERE THE NAME COMES FROM

ISH

how we actually feel

Not fine. Not terrible. Somewhere in between, and different by Thursday. Never a hundred percent, rarely a straight answer.

LY

lifestyle

Because there is a whole life going on around the illness — clothes, work, plans, humor, people — and it deserves better than a waiting room.

Put them together and you get a word for the way most days actually go. ISHLY. Life, give or take.

HOW WE DO IT

The rules, since a brand is mostly what it refuses.

we do

Recognition before reassurance

If something is hard, we say so first. Sometimes that is the entire job, and rushing past it to find a silver lining is how people end up feeling unseen.

we do

Humor, pointed at the situation

Never at the person living it, never at mobility aids, symptoms or treatment choices. Dark humor that creates recognition, not shame.

we never

Sell a cure, or imply one

No mindset fix, no diet that resolved it for someone’s cousin, no product that promises to give you your old life back.

we never

Ask you to be inspirational

No warriors, no fighters, no turning your pain into someone else’s motivation. You are allowed to just be ill and get on with it.

ISHLY publishes educational content and talks to qualified experts. It does not diagnose, prescribe or replace your own clinician, and it never will.

THE SHORT VERSION

Some days are good-ish. Some days are bad-ish. Most days are more complicated than one word can explain.

ISHLY is not here for the illness. It is here for the life around it — the plans, the clothes, the work, the humor, the people, and the surprisingly good days that turn up without warning.

no pressure, obviously

Be there for the rest of it.

The goods are out. The podcast and the journal are next. We build this in the open, so you get the first episode, the first journal and the occasional piece of writing that says the thing out loud. No pep talks, no miracle cures, no “have you tried yoga”. Nothing more than you asked for.

Unsubscribe whenever. We won't be weird about it.