As an active person, Monique (31) was fully immersed in life when she began to experience increasingly strange complaints. 'Already a couple of years ago I slowly started to lose strength and sometimes the control of my hands. Carpal tunnel syndrome was diagnosed, but after the necessary surgery, I continued to experience symptoms. In fact, I gradually found myself unable to move my right leg properly,' she says. 'After a few weeks, I also experienced difficulties with certain movements in my left leg, and walking became almost impossible. I was immediately referred to the emergency room. However, the usual scans and examinations didn’t shed a light on what was happening. There was nothing physically wrong with my nervous system. It turned out to be a functional neurological disorder, my brain was not able to properly send and receive signals. To use a technological metaphor: there is an error in the software, not in the hardware.'

A burden lifted off her shoulders With the correct diagnosis of Functional Neurological Disorder, a great weight was lifted off Monique's shoulders. 'For a long time I noticed that my health deteriorated without an obvious cause. When scans don’t show what is going on and you have to rely on your own perseverance for proper care, it creates a lot of uncertainty. Also, the symptoms of FND can be really confusing. If I consciously wanted to lift my foot, it wouldn't work, but it would in a reflex. What was even more odd, walking backwards was a lot easier than forwards. Fortunately, measurements on my phone had been showing abnormalities in my walking pattern for some time, so I knew that "it wasn't all in my head". Once FND was diagnosed in the hospital, I could finally start on my recovery – or so I thought. Unfortunately, there's no care pathway, which meant that I had to discover what worked and where I could go for treatment. For months, I practiced with a specialized physiotherapist (among others), at first with crutches and tiny steps. While crossing the street, I would sometimes still be in the middle when others already had the green light – a peculiar experience. I had to think about every step in order to "reconstruct the right path in my brain". At a nearby hotel, I was able to practice in the swimming pool and later on the treadmill. It takes a tremendous amount of energy to relearn something as natural as walking and make it an automatic process again. My life was completely on hold, so that I could put all my energy into my recovery.'

Going to the office on crutches 'I'm not a workaholic,' Monique says with a smile. ‘But still, after a few weeks, I enjoyed returning to the office, even if it was just for an hour per day. I needed to go by bus, despite living within walking distance from the Deloitte office.' Monique began her career at Deloitte in 2015 as a working student in Tax & Legal. Two years later, she started in Human Capital, where she worked on digital and strategic transformation projects in the public sector. ‘People are the center of our approach. Financial health is an important theme to me, and I focus on organizations that play a role in this. My work gives me a lot of energy, and I have several colleagues who are dear friends. It was nice for me to stay involved in this way. My colleagues and my employer – Deloitte – have played a pivotal role in my recovery, besides of course my family and friends. The health case manager, my coach, and my team leader(s) took great care of me. Together, we determined when I could handle more work hours and what activities I could take part in. It all worked out really well, as currently, I’m working full-time again.’

More awareness for FND 'I've been lucky,' Monique continues. 'Within a few months, I went from someone who skated the alternative Elfstedentocht on the Weissensee to not knowing how to walk. However, with an accurate diagnosis and treatment, I will – hopefully – be able to ice skate again next year. I wish anyone with FND would be able to recover as well as I have. Even though FND can be just as disabling as other well-known neurological conditions, it is still quite unknown. Fortunately, more and more research is being conducted. People can suffer from various symptoms such as paralysis, reduced sensation in the skin, gait disturbances, tremors, loss of speech, or reduced vision. Awareness is important because a faster diagnosis will prevent further decline and will enable a faster (full) recovery! That is why I want to share my story, even though it’s a little nerve-wracking to do so. I believe that we can learn from sharing such experiences. Moreover, FND deserves a large platform to increase people’s awareness. If this leads to improved care and helps stop people with FND from doubting themselves, then my mission will be accomplished.’ That is why Monique has been committed to the International FND Hope Foundation [https://fndhope.org/] since January 2024. April 2024 marks the first FND Awareness Month in the Netherlands!

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