For five years, crushing exhaustion ruined my life. Doctors told me it was anxiety until a sleep study finally revealed the truth

Toni Eberhard had a takeaway coffee in her hand when she arrived for her appointment with a neurologist in Sydney. By the time her name was called, she’d fallen asleep in the waiting room.

It was an oddly fitting moment for someone who had spent the previous five years desperately trying to convince doctors that the exhaustion consuming her wasn’t normal.

She’d been told she had low iron. Then chronic fatigue. When blood tests failed to provide answers, the conversation shifted to anxiety and mental health. But nothing explained why a healthy, active young woman could barely make it through the day.

Today, at 25, Toni finally understands why her body seemed to be shutting down while everyone around her carried on as normal. She has narcolepsy, a neurological condition that disrupts the brain’s ability to regulate sleep and wakefulness.

It’s hard to reconcile that moment with the teenager she had once been. Growing up on a farm in South Australia, Toni was the kind of kid who never stopped moving. She played every sport she could, thrived at school and was always outside, happiest when she was busy.

Then, halfway through high school, something changed.

‘Waking up was like war,’ Toni tells Daily Mail. ‘Mum would have to physically drag me out of bed.’

An overwhelming exhaustion settled over her life without warning, quietly stealing the energy that had once come so naturally.

‘You’re just tired’

Looking back, Toni can pinpoint the moment her life quietly began to change. She was in Year 11, juggling school, sport and plans for the future when an exhaustion unlike anything she’d ever experienced crept in.

At first it was easy enough to dismiss. Teenagers get tired. Year 11 is demanding. Everyone assumed she simply needed more sleep.

But this wasn’t the sort of tiredness that disappeared after an early night.

The energetic teenager suddenly found herself sleeping from the moment she got home from school until her parents woke her for dinner. Some days she would quietly slip home during school hours just so she could crawl into bed before returning to class. Getting up each morning became an enormous battle.

Trying to explain the exhaustion to other people was almost impossible because there was nothing familiar about it. This wasn’t the fatigue that follows a late night or a busy week. It was constant, all-consuming and impossible to push through, no matter how determined she was.

‘It felt like your brain was stuck in cement,’ she says. ‘Everything felt like it was 100 kilos heavier than it used to be. The easiest way I describe it is if you’ve stayed awake for more than 24 hours and you have that crushing need to close your eyes. It felt like that all the time.’

The dramatic change worried her parents enough that they took her to a doctor within a couple of months. Like many young women experiencing persistent fatigue, the first explanation was low iron. Toni was prescribed supplements and later underwent iron infusions, hoping each new treatment might be the answer.

When nothing changed, the appointments continued.

As the months turned into years, the blood tests kept coming back without answers. Doctors began talking about chronic fatigue and, when nothing obvious appeared medically wrong, the conversation slowly shifted towards her mental health.

‘Maybe it’s depression. Maybe it’s anxiety.’

Toni went along with the referrals because she trusted the doctors treating her, but deep down something never felt right.

‘I’ve always been a happy person,’ she says. ‘I’m not a nervous person. I remember thinking, ‘This can’t be it.’ I had limited energy and I didn’t want to spend it talking about something I didn’t believe was the problem.’

Life didn’t stop while she searched for answers. Following school, she moved to Newcastle to study radiation therapy, determined to build the future she’d always imagined, but without her family nearby the cracks became impossible to ignore.

She worked behind a bar at night, lived on campus surrounded by friends and tried desperately to keep up with everyone around her, even as her body seemed determined to do the opposite.

She fell asleep during seven-person tutorials. She nodded off on library desks and in shared spaces around college, her friends quietly closing the door whenever they found her asleep.

Coffee, once something she didn’t even enjoy, became a daily survival tool. At her worst, she was drinking six or seven coffees a day, sometimes washing them down with a Red Bull hidden inside her water bottle, hoping the caffeine would be enough to get her through placements, lectures and shifts at work.

It never was.

By the time she moved to Sydney after university, exhaustion was affecting every part of her life. She struggled to make plans with friends because she was always asleep. She often napped in her car before driving home from work because she didn’t trust herself to stay awake behind the wheel. Although her employers were understanding, she knew she couldn’t keep asking for allowances without an explanation.

Four years after she first walked into a doctor’s surgery, Toni reached breaking point.

‘I just said, ‘No. This isn’t right. There’s got to be more.”

The answer she’d been waiting for

By the time Toni found herself sitting in a new GP’s office in Sydney, she had run out of patience.

Years of blood tests, iron supplements and unanswered questions had taken their toll, and this time she refused to leave until somebody listened.

‘I just said, ‘No. This isn’t right. There’s got to be more,” she says. ‘I told my GP, ‘I can’t live like this. I know this isn’t just chronic fatigue. Please help me.”

That appointment changed everything.

Her GP referred her to a neurologist who, after waking her from the waiting room and hearing her symptoms, organised the first sleep study she’d ever been offered. Toni hadn’t even known such a test existed. After years of searching for answers, it felt almost surreal that nobody had suggested it before.

Even after finding a doctor who believed her, the waiting wasn’t over. She was told it could take up to nine months to secure a sleep study, a daunting prospect after already spending years looking for answers. Determined not to lose any more time, Toni added her name to every cancellation list she could find. A few months later, her phone rang.

The overnight study was unlike anything she’d experienced before. Covered in wires and monitored by cameras, she slept under observation before spending the following day completing a series of scheduled naps designed to measure how quickly she fell asleep and how her brain behaved once she did.

This time, there was no ambiguity. The sleep study finally captured in a single day what Toni had been trying to explain for years.

‘I think my average time to fall asleep was about three or four minutes,’ she says. ‘I hit REM sleep in three of the naps, and REM sleep is meant to take about 90 minutes. You should never hit REM during a nap.’

A few months later, she sat down with a sleep specialist who confirmed what the test had already revealed. At 23, Toni finally had the answer she’d spent five years searching for.

She had narcolepsy.

Suddenly, everything made sense. The exhaustion wasn’t laziness. It wasn’t anxiety. It wasn’t something she could simply push through.

Even then, the diagnosis surprised her.

‘I’d heard of narcolepsy from TV shows, but I thought it meant people just collapsed or randomly fell asleep (cataplexy),’ Toni says. ‘I don’t have cataplexy, so I never thought it could be me. I didn’t realise there were different types.’

The first person she called was her mum.

‘I cried happy tears,’ she says. ‘It sounds funny, but it was the biggest relief just to know that you’re not insane and there’s something that can be done about it.’

The diagnosis didn’t give Toni back the years she’d lost. Even now, she still feels the weight of everything the condition quietly stole from her.

‘I grieve for that part of my life,’ she says softly. ‘I lost my early twenties, and that’s not something I’ll ever get back. But I’m also so grateful I finally got my answer because I know a lot of people never do.’

Finding purpose in the pain

Receiving the right diagnosis transformed Toni’s life in ways she never imagined. The medication doesn’t make her narcolepsy disappear, but it has given her something she’d almost forgotten was possible – the chance to live instead of simply getting through each day.

She’s exercising again, catching up with friends and building the career she worked so hard for. There are still challenges, but they’re no longer accompanied by the constant uncertainty that shadowed her for so many years.

Living through that experience also inspired her to create Symptly, an app designed to help people with chronic illnesses keep track of their symptoms, medications and appointments.

It’s something she wishes had existed while she was searching for answers, helping patients build a clearer picture of their health instead of relying on memory alone.

‘If I can help even one or two people speed up that journey or make them feel a little less alone, then that’s the goal,’ she says.

Today, Toni encourages anyone who feels something isn’t right to trust their instincts.

‘I think you know your body better than anybody ever will,’ she says. ‘If you think your health is more than what you’re being told, it’s okay to ask for a second opinion. It’s never us against doctors, they want the best for you too, but you’re the one who has to live with your body every day.’