A life upended by FND: a Suffolk woman speaks out and asks, what comes next? But here’s where it gets controversial... a look at a condition that reshapes daily living while sparking debate over care and understanding.
Hannah Dickerson, 30, once led an active life as a majorette and walked more than a mile each day to her administrative and marketing job in Ipswich. Today, she depends on a wheelchair or crutches, and she requires assistance to get out of bed and to use the bathroom. The ongoing fatigue, speech difficulties, seizures, paralysis, gait and breathing problems, limb weakness, and brain fog leave her unable to walk unaided and force her to rely heavily on others.
“I hate it. It has turned my life completely upside down,” Hannah says. Yet she refuses to surrender without a fight, holding onto a stubborn spark of resilience.
FND, or functional neurological disorder, is thought to affect roughly 50,000 to 100,000 people in the UK. It disrupts the brain and nervous system’s ability to send and receive signals. While doctors don’t agree on a single cause, many researchers suspect links to stress or trauma, or a response to infection or inflammation.
Neurologist Mark Edwards of King’s College London describes FND as producing “significant disability” that can resemble the impact of Parkinson’s disease or multiple sclerosis for some patients.
Hannah’s decline began in March 2022, when numbness spread from her legs to her feet and then to her arms and hands, with speech difficulties following. After ten months of confusion and unanswered questions, she received the FND diagnosis. She recalls feeling frightened and overwhelmed by uncertainty: “I was confused and shocked because I hadn’t heard of this before.”
Access to diagnosis, rehabilitation, and ongoing care remains limited across much of the UK, according to FND Action. Waiting lists grow longer, and many families manage complex symptoms without robust specialist support. Chief Executive Kim Rosser notes that people “falling through the gaps” is an everyday reality, and calls for fair, well-funded care pathways for all who receive a diagnosis.
Hannah’s journey through the NHS has been uneven. She required a private neurologist to obtain an official diagnosis before Ipswich Hospital confirmed it. After that, she found herself navigating the system largely on her own. “I was told to look up neuro symptoms,” she recalls, adding that the message implied “there’s no cure; see you later.” This experience underscores the stigma attached to a condition that remains poorly understood yet is increasingly common. The result, she says, is a painful mix of frustration and hope—frustration at limited support, and hope that she might reclaim some independence.
Hannah’s father, Peter Lenney, is among those who stand by her. He admires her optimism and determination to stay positive while continuing to fight for a better future. “You have to stay hopeful,” he says, hoping for a day when his daughter can regain more independence.
While expressing gratitude for NHS efforts, Lenney voices a common sentiment: current services for FND patients can feel insufficient. Hannah echoes that sentiment, acknowledging the disorder’s complexity and individual variability. “It’s a minefield, and I’m still trying to understand it,” she notes, emphasizing that doctors may struggle to treat such a variable condition.
There is, however, a glimmer of potential progress. The Department of Health and Social Care has pledged action to transform care for patients with conditions like FND, including funding for advanced research. In a related move, NHS England formally recognized FND as a core neurology sub-speciality, accompanied by new national standards aimed at improving timely, clear diagnoses and access to appropriate treatments.
Professor Edwards, based at the Institute of Psychiatry, Psychology and Neuroscience at King’s College, cautions that recovery is possible in theory. He explains that the core issue is a brain function malfunction rather than permanent damage, and many people do improve—often when they can access high-quality care. Yet the reality remains challenging: limited NHS services for FND and ongoing stigma hinder progress, leaving many patients with lasting symptoms.
To try to restore her function, Hannah has pursued expensive private treatments, including electric nerve stimulation. While evidence of its effectiveness is not conclusive, she has heard stories of others returning to near-normal life and remains hopeful for her own improvement. “If others can achieve a greater level of independence, why not me?” she asks.
NHS England has been contacted for comment. In the meantime, Hannah’s story shines a light on the gaps in care, the resilience of patients and families, and the urgent need for more widespread understanding and support for FND.
What do you think about the current state of care for FND? Do you believe healthcare systems should do more to standardize diagnosis and treatment, or should patient-driven, private interventions be a larger part of the conversation? Share your thoughts in the comments.
