Monthly Archives: April 2026

Living Between Signals: Functional Neurological Disorder (FND) and the Reality of Invisible Disability

Living with Functional Neurological Disorder (FND) is hard to explain.

The symptoms are real. They can be disabling. But many people don’t understand them.

FND affects how the brain sends and receives signals to the body. In my case, it shows up as seizure-like episodes and periods of dissociation. I may look conscious, but inside, I feel disconnected from myself. Sometimes my body can move, react, or shut down in ways I cannot control, even when my mind is trying its best to stay present.

This is my reality.

My diagnosis came in my late 30s, during the COVID-19 pandemic.

Before that diagnosis, I had several seizure-like episodes that required urgent medical care. I was admitted to the ICU, and that period became a turning point for me. It was the moment I began to understand that something serious was happening in my body.

I consider myself fortunate to have been cared by dedicated medical teams, including specialists from Sarawak General Hospital (SGH) and doctors from a private hospital. They helped stabilise my condition and guided me toward a diagnosis. Their commitment, expertise, and care made a real difference in my life.

Before all this, my life looked very different.

I was once a high-performing student, and fortunate receiving a scholarship from my employer to study overseas. It was a moment of pride and not just for what I had achieved, but for the future I believed I was building. That opportunity became part of who I was. Later, I worked as a professional for almost 10 years in a government agency and in an international companies.

My work was never just a job. It was something I held onto with meaning. It gave me a sense of direction, of belonging, and of being able to contribute to the community through the knowledge and skills I had spent years developing.

FND did not take that away overnight. But slowly, it changed what I could manage.

Things that used to feel easy became unpredictable. I could not rely on my body in the same way anymore. My professional work required consistency, but my condition did not provide that.

For several years, I tried to function like everyone else. I worked, adjusted, and pushed through symptoms that I did not fully understand. Like many people with invisible illness, I made quiet changes: changing my portfolio, modifying tasks, pacing myself, and trying to stay stable.

But it was not always possible.

There were days when my body would suddenly stop responding. Some episodes were so serious that I needed immediate hospitalisation. They could happen without warning.

FND does not stay predictable.

Recovery was not immediate. Over time, the repeated episodes made my work environment unsafe: not just for my career, but for my health and well-being. What made things more complicated was the nature of FND itself. It sits between neurology and mental health. I had to attend many different clinics: neurology, psychotherapy, sleep, respiratory, and others.

Meanwhile, FND is real, but sadly it is often questioned. It is disabling, but not always visible on medical scans.

Because of this, people with FND are sometimes not fully understood. We may feel doubted or ignored by others: especially medical professionals, family members, friends, and sometimes even by ourselves.

This is why awareness matters.

At one point, my condition became too severe to continue working safely. After years of trying to cope and adjust, I made the difficult decision to stop working.

With support from my employer and medical team, I am receiving invalidity benefits through the Social Security Organisation Malaysia (PERKESO).

The process was not just paperwork. It was emotional.

Applying for an invalidity pension means accepting something difficult: that your condition makes it hard to live and work the way people expect.

The application involved extensive medical documentation, clinical assessments, and trying to explain a condition that is not always easy to measure.

Nevertheless, I was supported throughout this process. The understanding and cooperation of my employer and medical team made a meaningful difference. It showed me that invisible disabilities can be recognised when there is appropriate medical validation, empathy, and institutional support.

Letting go of that life was not easy.

Letting go of my working life was not easy, it was a form of grief.

It was not just about stopping work. It was about losing a part of my professional identity or it was about losing a part of myself I had always known. I had spent years building a clear structured path: studying, working, contributing. Accepting that this path might no longer be possible was not easy and the most difficult experiences of my life.

There is a quiet and often unspoken grief in this kind of loss.

Living with FND remains unpredictable.

Living with FND is challenging because symptoms can change.

There are good days and difficult days. This does not mean we are fully well; it is simply the nature of the condition.

Living with FND has made me more aware of the connection between the brain, mind, and body.

Over time, I began to understand something important with help from an SGH psychotherapist.

Through therapy, I learned that the body remembers, even when the mind tries to move on. The Body Keeps the Score (van der Kolk, 2014) explains how the body can hold and express experiences, especially trauma.

For me, FND feels like my body expressing what cannot always be put into words.

Most importantly, FND is not a failure of willpower or personal weakness.

It is a recognised condition in which brain networks involved in movement, sensation, awareness and body are not working together or function properly. The symptoms are not imagined. They are real, felt, and often unpredictable.

Recovery, for me, does not mean “going back to who I was.”

It means learning to live differently WITH FND.

It means understanding my limits with greater awareness, managing symptoms, reducing triggers, and building a life that is still meaningful, even if it looks different.

Living with FND has changed how I see stability.

Some days are manageable. Some are not. And that uncertainty is part of the condition. Still, there is strength in learning to adapt.

It has also changed how I see purpose.

While I may no longer contribute in the same professional capacity as before, I continue to find meaning in new forms of engagement. I am currently involved with the Mental Health Association of Sarawak (MHS), where I share lived experience and contribute to mental health awareness efforts.

There is value in lived experience.

There is value in speaking openly about invisible disability.

And there is value in helping others feel less isolated in their own experiences.

To those living with FND or similar conditions: you are not alone, even when your condition is not fully seen or understood.

To caregivers, clinicians, and support systems: your patience, validation, and willingness to understand can significantly impact a person’s journey.

And to the wider community: not all disabilities are visible. Recognition and awareness are essential steps toward reducing stigma and fostering inclusion.

Living with FND has changed my life.

But it has also taught me something important. Sometimes, the body speaks what the mind cannot. And learning to listen When the Body Says No (Gabor Maté, 2003) is part of healing.

Living with a condition that sits between neurology and mental health can be difficult to explain, especially when it is not immediately visible.

On the outside, I can still communicate, think, and engage. But internally, I experience unpredictable episodes that affect my awareness, my body, and my ability to function consistently.

My symptoms includes seizure-like or dissociative experiences, as well as central sleep apnea that requires the use of medical support devices. These are not occasional inconveniences, but serious conditions that affect basic functioning and safety. At times, I have had to step away from work or responsibilities, not by choice, but because my body could no longer function in that moment.

My diagnosis Functional Neurological Disorder (FND) reflect the complex relationship between the brain and the mind, yet they often do not appear the way people expect illness to look. In Sarawak, there is a dedicated neuropsychiatrist team, who supports patients living with these complex conditions. However, globally, FND remains widely misunderstood, with limited awareness and challenges in diagnosis. It is often invisible on the outside, but its impact is deeply real; disrupting daily routines, affecting independence, and leaving individuals feeling as though they have lost control over their own bodies.

One of my biggest challenges is not just the condition itself, but the stigma that comes with being unseen. When symptoms are invisible, they are often dismissed. When functioning appears inconsistent, people may assume it is a lack of effort, motivation, or discipline. Over time, stigma replaces understanding, and disbelief becomes another burden to carry. I have experienced how quickly perception can change; from being seen as capable, to being questioned, within the same environment. The absence of visible symptoms does not mean the absence of real limitations or disability.

Mental health and neurological conditions often exist together. They influence each other, and both deserve to be taken seriously, not only in healthcare systems, but also in workplaces and communities. Support does not always mean solving everything. What many individuals in similar situations need is not pressure, but understanding.

Understanding that not everything can be pushed through, sometimes it means allowing flexibility.
Understanding that inconsistency does not mean lack of effort, sometimes it means reducing pressure for consistency.
Understanding that invisible symptoms are still real, sometimes it means recognising struggles that cannot be seen.
Understanding that living with such conditions requires ongoing adjustment, not simply willpower, sometimes it means not being told to “push through” or “stay strong.”

Mental health advocacy must include real-life experiences, where brain and mental health conditions overlap, and where people are often not recognised because their illness cannot be seen.

Mental Health Association Sarawak (MHAS) provides a platform for people living with mental illness, caregivers, and professionals. By listening to lived experiences, we can reduce stigma and build a system where being “invisible” does not mean being “not real.”

Every condition that cannot be seen still deserves to be believed and taken seriously. If it cannot be seen, it does not make it less real, it only makes it easier to overlook.