What is TSW? and why isn’t anyone talking about it?
A bit about the insanity that is Topical Steroid Withdrawal (TSW)
Let’s start with the basics — even though TSW is anything but “basic”.
TSW stands for Topical Steroid Withdrawal.
but that term doesn’t even come close to capturing what it actually is. It is one of the very reasons I struggle to write about it.
TSW is a living hell.
Those of you who have gone through it already know what I am talking about, but for those that don’t, allow me to explain in a bit more detail.
TSW is a iatrogenic condition, meaning it is caused by the very “medications” that were supposed to help us – in this case topical steroids – which are prescribed for everything from eczema to rashes and other “mystery” skin conditions. They are also readily available over the counter in most countries.
After a while of using them, they stop working. And the more you use, the worse your skin gets. The whole time while using the topical steroids for your eczema or other skin condition, we’re told over and over that it is just our condiiton flaring, not the drug causing it. Even when we do learn about TSW, most doctors (especially dermatologists) gaslight us and tell us it doesn’t exist – even though it’s right in front of their face.
As you keep using the creams and getting higher doses and higher potency ointments for years, sometimes even decades, your body starts to deteriorate completely.
It collapses.
I watched my skin break down in front of me for decades now. Starting before I even knew about TSW, I was going from doctor to doctor trying to figure out what was going on with me, and just kept getting more poison prescribed to me, and told to use it as much as I needed/wanted.
And here I am now, nearly 11 years of going through TSW, and I’m sitting here going through a flare as I write this.
raw. burning. oozing. Flaking. And the itch… oh God, the itch…
During the worst of it, I didn’t sleep for months. My hair fell out in clumps until I had no choice but to shave it off completely. I couldn’t regulate my temperatue and was shivering even in high summer heat. My entire nervous system, body, and mind went into shock.
And no one believed me.
I was told it was still just my “worsening eczema”. That it was “just anxiety”. That I was imagining it because TSW doesn’t exist. I was gaslit by doctors for years and years,
This is what TSW does:
it robs you of your skin — and then your sanity.
and the worst part?
it’s completely avoidable and preventable
TSW exists because of the medical system.
not in spite of it
dermatologists have been overprescribing steroids for decades – despite the fact that they try to write us off as “steroid phobic” or blame it on us “overusing” them.
the pharmaceutical industry has profited off dependency.
regulatory agencies have looked the other way.
and the people suffering most are dismissed, mocked, gaslit, or diagnosed with eczema that’s “just severe.”
most doctors have never heard of it.
many who have still deny it’s real.
there are no treatment protocols.
no insurance coverage.
no warning labels.
and no accountability.
so why am i writing about it?
because i lived through it (and still am).
because too many people are still in it (and there will be many more).
Because there are people dying from the physical, emotional, and spiritual toll of this condition — and no one is listening.
because this is a massive, silent epidemic.
and the silence is not accidental — it’s engineered.
TSW is not just a skin problem.
it’s a systemic collapse — of the skin, the body, and the medical system around you.
it shows you how fragile the truth is.
how easily science bends to money.
how quickly people look away when something doesn’t fit the narrative.
so i’m here to tell you the truth about it.
because no one told it to me.
if you’re in it,
you’re not crazy.
you’re not alone.
you’re not exaggerating.
your pain is real.
your rage is holy.
your story matters.
and we will keep sharing our stories until they can’t ignore us anymore.
— Nina
