The Unspoken Diagnosis: My Fight for Medical Truth After a Brain Aneurysm By Dusty Wentworth

The Unspoken Diagnosis: My Fight for Medical Truth After a Brain Aneurysm

This is the story of how a life-threatening brain injury collided with diagnostic failure—and how I had to fight to be believed.

It wasn’t fear that hit me first. It was the blur—the smudging of vision, the sudden loss of control, and then, the vanishing of time. I collapsed at home without warning, vision gone, panic rising. My wife called for help, and I was rushed to hospital.

I was taken to the stroke unit, redirected to A&E, and later passed on to ophthalmology. Each department ruled out the obvious but failed to offer answers. They found blood in my eyes, but no cause. Eventually, I was told I could go home.

But something was deeply wrong.

Just after 10:30 that night, the phone rang. An A&E doctor, clearly rattled, told me I should never have been discharged. A brain scan had shown an aneurysm. Arrangements were hastily made: I was to return to A&E by 7 a.m. for an urgent lumbar puncture.

When I arrived the next morning, no one knew why I was there. I waited, deteriorating by the hour. Despite repeatedly telling staff I was feeling worse—a pounding headache, growing confusion—I was told to wait. It wasn’t until 5 p.m. that the lumbar puncture was finally done—outside the critical 12-hour diagnostic window. This delay was crucial, as the lumbar puncture is most reliable for diagnosing a subarachnoid haemorrhage within the first 12 hours. The results were inconclusive.

It would be 48 hours later, now seriously unwell, that I was blue-lighted by ambulance to Addenbrooke’s Hospital.

A Diagnosis of Convenience

While in hospital, my symptoms were profound: memory loss, loss of mobility, significant cognitive changes. Yet no one could definitively explain them, nor could they say if the aneurysm had bled. So, into the “functional” box I went. I was told I had Functional Neurological Disorder (FND).

It felt like the medical equivalent of a shrug.

FND is a condition where patients experience neurological symptoms such as seizures, limb weakness, movement disorders, or blackouts—with no identifiable structural damage to the brain. The problem lies not in brain damage, but in brain function: the brain is misfiring, not broken. It’s surprisingly common—the second most frequent reason for referral to neurology clinics after headaches. Yet despite its prevalence, FND is poorly understood and often misrepresented. Many patients report being dismissed or told their symptoms are psychological. Historically associated with terms like “hysteria”, FND still carries the weight of stigma and suspicion.

I spent three months in hospital, then was transferred to a neurological rehabilitation centre. Four weeks into my stay, the worst happened: the aneurysm ruptured.

I was unconscious for four weeks. My family were told not to expect a recovery. But I survived.

When the Aneurysm Ruptured: The Vanishing Label

Despite the odds, I woke up. I was alive—but my body and mind had changed. I couldn’t walk. I’d lost over a decade of memory—a devastating blank space where years of my life should have been. I was, in every sense, a man remade.

Here’s what strikes me now: nothing about my condition changed after the rupture. The same symptoms I had before the coma persisted after it. Yet something else did change.

The label.

No one mentioned FND anymore.

Voldemort Medicine: The Diagnosis No One Dared to Name

FND became the name that shall not be mentioned.

In all my follow-up appointments, discussions centred on the subarachnoid haemorrhage and its undeniable impact: my mobility issues, the relentless brain fog, the debilitating fatigue. But the earlier FND diagnosis vanished from the record—unacknowledged, unexplained, unspoken. It was as if it had never existed.

I began to wonder: was it ever the right diagnosis? Or just a convenient one? A placeholder for uncertainty, rather than a true cause?

Specialist medical negligence lawyers are now combing through my records. I want answers. I deserve them. So do countless others who’ve been told their suffering is “functional”—a word too often used as a clinical synonym for “not our problem”.

The Emotional Cost of Disbelief

Being misdiagnosed is painful. Being disbelieved is something else entirely. It undermines your sanity. It infects your sense of self. When professionals treat your visible, measurable decline as a psychological illusion, you begin to question not just your body, but your reality. You feel dismissed, unheard, and profoundly alone.

To survive that—and then to come back from a coma with the same symptoms and still no clarity—requires something deeper than resilience. It takes an unshakeable resolve.

The Bigger Picture: Why Awareness Matters

FND affects thousands across the UK. It’s common, complex, and desperately under-resourced. Yet few people know what it is. Fewer still understand how it devastates lives. NICE currently offers no dedicated guidelines for FND, though it acknowledges the importance of clear diagnosis, physiotherapy, and psychological support. In practice, access to such treatments remains a postcode lottery.

Advocacy groups like FND Hope UK are fighting for recognition, funding, and proper clinical pathways. But progress is slow. Until we admit the glaring gaps in our system—the diagnostic shrug, the postcode lottery of care, the silence when things go wrong—patients will continue to fall through the cracks.

The Fight for Truth

I still don’t know how much of my story was avoidable. But I know this: no one should have to endure trauma and disbelief. No one should be written off for being complex. No one should have their condition buried just because the system doesn’t know what to do with them.

I'm still here. Still disabled. Still asking questions. And I won’t stop—because the truth should never be an act of defiance. It should be the standard of care for every patient.

Join the Conversation

If this story resonates with you—whether as a patient, carer, or healthcare professional—share it. Let’s challenge the silence around misdiagnosis and invisible illness. Let’s demand accountability, compassion, and clinical rigour.

Because the next life on the line could be yours. Or someone you love.

#DustyWentworth