My UARS Story: Seven Years of Being Told I Was Fine

I first noticed something was wrong when I started high school.

I was twelve or thirteen. I had just had orthodontic extractions — braces, the standard treatment, nothing alarming at the time. Within months, the exhaustion started. I chalked it up to hormones, a busier schedule, the ordinary upheaval of being a teenager. That was what everyone said.

In primary school I had been studious. Interested in things. By high school I was living in a fog. Coming home to sleep, waking up still tired, sitting in lessons and feeling like I was watching them through glass.

I didn't know it then, but those orthodontic extractions had narrowed my palate. A narrower palate changes where your tongue rests. That changes your airway. And a restricted airway, night after night, is quietly catastrophic.

The Years in Between

Over the following seven years, I saw doctors. Many of them.

GPs who offered SSRIs for the anxiety, the low mood, the fatigue. Rheumatologists. Endocrinologists. Nutritionists, herbalists, practitioners of every kind. I followed elimination diets. Tried supplement protocols. Paid for private blood tests that consistently showed nothing significant — low iron occasionally, low B vitamins, things I addressed and still felt terrible.

I was diagnosed at various points with fibromyalgia. With undifferentiated connective tissue disease. Nothing explained the fog. Nothing explained why I could sleep for ten hours and wake up feeling like I hadn't slept at all.

Being female meant doctors assumed hormones. Being young meant they assumed I was overreacting. I was told it was depression. Anxiety — and I was anxious, of course I was, but being in a state of total depletion with no explanation tends to produce anxiety. That's not the same thing as anxiety being the cause.

I was told to relax, exercise, think positively.

"A special kind of torture," is how I've come to describe those years — being in total depletion and being told, repeatedly, that you are fine.

Finding the Answer Myself

I never questioned my sleep. I knew nothing about sleep disorders. I slept — or I thought I did.

It was through my own searching, the way most of us find it, that I came across an article about a woman my age describing my exact experience. Same symptoms. Same dismissals. Same fog. She had eventually figured out she had a sleep issue: Upper Airway Resistance Syndrome.

UARS. A type of sleep-disordered breathing that doesn't show up on standard tests. Unlike obstructive sleep apnoea, where the airway collapses completely and breathing stops, in UARS the airway narrows but doesn't close. Your body has to work incredibly hard to pull air through. Your brain jolts you into lighter sleep dozens of times a night to restore breathing. You don't remember waking. But your nervous system does.

I went back to my GP and explained what I thought was happening.

I was essentially laughed out of the office. Didn't fit the profile — not overweight, not male, didn't snore. No point testing.

I persevered. Found another GP. Got a referral, reluctantly. Eventually had a sleep study — the standard NHS take-home test. The results came back: mild obstructive sleep apnoea. Not significant enough to warrant treatment.

I taught myself to read sleep data. Learned the difference between AHI — the apnoea-hypopnea index, which captures full breathing stops — and RDI, the respiratory disturbance index, which also captures the partial obstruction events that characterise UARS. My AHI was low. My RDI was high. My subjective experience was severe.

My doctor hadn't looked at the RDI.

I went to Milan for a more comprehensive in-lab sleep study. Visited dentists, holistic dentists, Dr. Mike Mew in London. Spent months researching palate structure, airway mechanics, the orthodontic connection. Began to understand, piece by piece, that what had started at twelve was still happening every night.

The Surgical Route

The decision to pursue surgery came after years of exhaustion, thousands of pounds spent on things that hadn't helped, and a CBCT scan that showed what a radiologist described as a tiny, straw-like airway.

I had my tonsils removed first — chronically inflamed, contributing to obstruction. The removal was messier than expected. On a Zoom call a few days later, my mouth filled with blood. I went straight to A&E, spent the night. After that, recovery was manageable.

Double jaw surgery was a different order of magnitude.

Twelve weeks off work. Months of liquid food while the people around me ate normally. A face that changed — subtly, but unmistakably — in ways that still catch me off guard to this day. Swelling that rose and fell unpredictably. Speech that came back slowly. Nerve damage in my lips and chin that I still feel now, more than a year later.

I had been well-prepared. I had researched every detail. Nothing prepared me for the actual experience.

But my pharyngeal airway doubled in size. My breathing metrics improved. I then had a procedure to stiffen my epiglottis — a diagnostic scope under sedation had shown it collapsing over my airway. The mechanical problems that had been building since I was twelve had, finally, been addressed.

I thought: finally.

The Gap Nobody Warned Me About

Here is what no one explained.

Surgery fixes the mechanics. It doesn't undo what years of disordered sleep have done to your nervous system.

My brain had spent years waking me — briefly, incompletely — to restore breathing. Dozens of times a night, for years. Cortisol flooding my system while I was supposed to be resting. My nervous system had learned, at a level below conscious thought, that sleep was dangerous. That lying down was when things went wrong.

Fixing the airway doesn't automatically undo that learning.

For me, this is compounded by CPTSD. Early experiences had already created a baseline of hyperarousal — a nervous system that was already sensitised, already closer to the edge. UARS added a nightly physiological stressor that amplified everything. Made my system more reactive. Harder to settle. UARS, in my case, became a physiological amplifier of trauma patterns. And the trauma made my nervous system more reactive to the airway resistance.

Understanding this, clearly and completely, took me a long time. In the months after surgery when I was still exhausted, still foggy, still struggling — I just felt like I had failed.

Where I Am Now

I am better than I was. That is real, and it matters.

More good days. The fog is less constant. The mornings are not always that particular dread.

But I'm not cured. Recovery from years of disrupted sleep and a chronically dysregulated nervous system is not a single procedure. It is slow, non-linear work. Somatic practice. Learning, gradually, what safety feels like in a body that spent a long time not knowing.

I started this site because I needed it to exist when I was lost. If you're at the beginning — still trying to get a diagnosis, still being told your sleep study is fine, still being offered antidepressants for a physiological problem — I want you to know what I didn't: the answer is often not what shows up on standard tests. Your RDI matters. Your nervous system is not separate from your sleep. Your experience is valid regardless of what the metrics say.

You're allowed to keep pushing.

I'm not a doctor. This is my personal experience. Please consult a healthcare professional for your own situation.