A powerful shake-up in Hannah Dickerson’s life came from functional neurological disorder (FND), and she’s not shy about saying she hates what it’s done to her. The 30-year-old, once a lively majorette with a daily mile-long walk to her Ipswich admin and marketing job, now depends on a wheelchair or crutches and needs assistance getting out of bed and using the toilet.
“Being constantly seen as a burden and unable to do simple things is incredibly hard,” she admits. Yet she clings to a stubborn fight still burning inside her, even as the reality of FND reshapes every day.
FND is thought to affect roughly 50,000 to 100,000 people in the UK. It disrupts how the brain and nervous system send and receive signals. While its exact cause remains unknown, some experts suspect links to stress, trauma, or responses to viral infections and other inflammatory events. Professor Mark Edwards, a neurologist at King’s College London, describes the condition as producing significant disability, comparable in impact to illnesses like Parkinson’s disease or multiple sclerosis.
For Hannah, the effect is profoundly debilitating. She describes extreme fatigue, impaired speech, seizures, paralysis, mobility loss, gait and breathing difficulties, limb weakness, and foggy thinking. “I can’t walk unaided and can probably take about six steps before I become breathless, so I rely on a wheelchair and a lot of help from others,” she says.
Her health began deteriorating rapidly in March 2022, when she first lost sensation in her legs and feet. The symptoms spread to her arms and hands, and speech became challenging. After ten exhausting months of uncertainty, she received an FND diagnosis. “I was confused and shocked because I hadn’t heard of it,” she recalls. “It was frightening and I didn’t know what to expect or what it meant.”
A gap in care remains a major concern. The FND Action charity notes that access to diagnosis, rehabilitation, and ongoing treatment is severely limited across much of the UK, with long and growing waiting lists and scant specialist support for families managing complex symptoms. Chief Executive Kim Rosser says, “We hear from people every day who are falling through the gaps. We urgently need equitable, properly commissioned pathways so everyone diagnosed gets the care they deserve.”
Stigma compounds the challenge. Hannah’s diagnosis required a private neurologist before Ipswich Hospital would officially confirm it, and afterward she says she was largely left to navigate the system on her own. “I was told to google neuro symptoms and that there’s no cure—see you later,” she explains. The result is a lingering stigma from the unknown, even though the condition is more common than many realize, and Hannah has fought to pursue additional help. While a sense of resignation at times looms, she insists on hope and the possibility of regaining independence in the future.
Hannah’s father, Peter Lenney, expresses pride in his daughter’s resilience. “She’s stayed optimistic, accepted what’s happened, and kept moving forward,” he says. He believes maintaining positivity and hopeful recovery are essential, even as they wish the NHS could offer more support.
Hannah herself acknowledges the NHS’s efforts but laments that more could be done for people with FND. She recognizes the condition’s complexity and variability—no two patients experience the same symptoms—and notes that medical understanding often feels incomplete. “It’s a minefield, and even I’m still trying to wrap my head around it,” she says.
There are glimmers of possibility on the horizon. The Department of Health and Social Care has announced actions to transform care for conditions like FND, including funding cutting-edge research. In August, NHS England formally recognized FND as a core neurology sub-speciality and established new national standards in hopes of providing timely, clear diagnoses and appropriate treatments for more patients.
Professor Edwards emphasizes that recovery is possible in theory. He explains that the core issue is a brain function malfunction rather than irreversible damage. While many people face persistent symptoms, there are cases of improvement and even full recovery when patients can access high-quality care and treatment. However, limited NHS services for FND and persistent stigma continue to hinder progress.
As for treatments, Hannah is exploring costly private options, such as electric shock stimulation, despite limited and inconclusive evidence for their effectiveness. She’s witnessed anecdotes of others returning to near-normal lives and hopes a similar outcome could be possible for her. “That kind of independence would be wonderful,” she says, though she remains pragmatic about the odds.
NHS England has been contacted for comment. This story highlights a broader lived reality: FND affects people in varied ways, with systemic gaps that can delay diagnosis and care. The conversation continues about how best to support those affected and how to bridge the disparities in access and understanding across the country.
