For nearly two decades, Ellen built her life around supporting children and being part of her regional community, and she loved it. Not long ago, her health shifted in a way she could never have expected. After sustaining injuries at work and going through a traumatic experience that deeply affected her, Ellen’s health began to unravel gradually, then suddenly. What started with tremors and a panic attack during trauma-focused therapy gave way to seizures. From there, the episodes became more frequent and severe and brought a cascade of changes that altered her daily life, her work, and her future.
A Diagnosis That Finally Made Sense
Ellen’s seizures began without warning — sudden collapses, shaking, and periods of unresponsiveness that left her exhausted and frightened. In the early days, she encountered a mix of responses. Some health professionals suggested her symptoms might be trauma-related — an explanation that, while incomplete, was edging her closer to a diagnosis. At other times, she faced more sceptical attitudes that made her feel dismissed.
A turning point came when two major seizures were witnessed in the emergency department. For Ellen, it was validating, finally, others could see what she was experiencing.
Later, during a medical review linked to her workers’ compensation case, she was given the label conversion disorder — terminology that felt confusing. As she began to research, she discovered that conversion disorder is now more widely recognised as Functional Neurological Disorder (FND).
For Ellen, having that diagnosis brought relief even if it didn’t change the daily reality of living with an unpredictable and poorly understood condition.
“It wasn’t in my head. It was real. Finally, someone believed me.”
Living With FND
Today, Ellen experiences seizures regularly, sometimes many in a row. They take a heavy toll, leaving her drained and unable to function. She struggles with memory lapses, word-finding difficulties and physical unsteadiness. She can no longer drive and is not sure how she will find work that accommodates her condition.
The impact has been profound — not only for Ellen, but also for her family. One of the hardest moments was hearing her niece say: “I miss the old you.”
Despite this, Ellen has found ways to hold on to her identity and creativity. She has written a children’s book, currently being illustrated by her sister, and is planning another book filled with comforting activities for people going through tough times and similar situations.
The Challenge of Navigating Systems
Managing paperwork, medical evidence and long waitlists has been daunting, and at times overwhelming. The financial pressure of not currently being able to work adds another layer of uncertainty. Awareness of FND in healthcare also varies widely, which means Ellen has often had to explain her condition before receiving appropriate care.
“It’s like having another full-time job — but one you never asked for.”
Support That Matters
Amid the difficulties, certain supports have made a real difference. After months of travelling hundreds of kilometres to Perth for appointments and often having to explain her condition from the beginning, Ellen was referred to NeuroCare, the Neurological Council of WA’s community-based, nurse-led program. That was how she met Charlotte, her Community Neurological Nurse.
For Ellen, Charlotte was the first health professional to take the time to really explain Functional Neurological Disorder. She described the mechanisms behind the condition, provided risk-management strategies, and shared evidence-based resources — information that had been missing from earlier interactions with health professionals.
“It helped us finally understand the condition, and it eased so much of our fear and anxiety,” Ellen says.
Charlotte also supported Ellen and her mother with the mountain of paperwork and referrals, while checking in regularly, explaining next steps in plain language, and following up so nothing slipped through the cracks. In addition, she delivered an FND group education workshop that Ellen attended with others in similar situations. There, they were introduced to self-management tools and advocacy strategies to support their recovery.
Having Charlotte based in the region has been particularly important. While many services still require travel to Perth, Charlotte provides a local touchpoint — someone who understands the complexities of FND and can bridge the gap between specialist advice and everyday life.
Another source of strength has been the Albany FND peer group, part of the NeuFriends network. Seeing other people with FND — with seizures, speech issues, memory lapses, even foreign accent syndrome — has been both confronting and comforting.
“For the first time, I saw people like me. I didn’t have to explain.”
Watching others experience seizures also gave Ellen a new perspective. It helped her understand how frightening it can be for those on the outside looking in — a realisation that deepened her empathy for what her own family has witnessed.
For Ellen, the group has become a place of understanding, learning, and connection — where lived experience bridges the gap that medical explanations often cannot.
Holding On To What Matters
While life looks very different now, Ellen focuses on the things that continue to bring her meaning. She cycles to the beach when she is well enough, enjoys coffee in the sun, and treasures time with her close-knit family. Writing and creativity also remain outlets that give her a sense of purpose and identity beyond her condition.
It’s these threads of continuity — the people she loves, the places that restore her, and the creative projects that carry her voice — that remind Ellen she is more than her diagnosis.
Her message to others facing FND is simple but powerful:
“You are validated. It’s not in your head. You’re not alone.”
Alongside her words, Ellen chose a photo of a flower pushing through bricks — a symbol of resilience that speaks to her journey. She adds:
“It is possible to survive in the hardest of places. It is also possible to bloom. I would not have bloomed without my amazing support network, who have helped me through the most difficult time of my life. For those people, I will be forever grateful.”
