In 2019 I began losing control of my body and started having seizures. Initially they were every few months but became increasingly frequent until they were happening four times a day, lasting up to an hour at a time. My right arm developed a permanent tremor and I suffered from severe exhaustion. Having been signed off work, I was tested for multiple sclerosis, motor neurone disease, early onset Parkinson’s and epilepsy. All the results came back negative.
Travelling, socializing or even leaving the house became difficult. On one occasion I stood in Paddington station and missed three consecutive trains because my seizure made walking difficult and the platform announcement was so close to departure that I couldn’t get there in time. I stood and I cried and I shook and no one helped me. I desperately wanted to know what was wrong but I didn’t realize that how medical professionals would explain my diagnosis would be as important as the diagnosis itself.
I was passed from specialist to specialist until eventually I spoke to a neurologist who asked me, as we were talking, to tap my thumb and middle finger together on my left hand. As I did so, the tremor in my right arm stopped. From this small exercise, I finally got a diagnosis: functional neurological disorder (FND).
FND is a software problem rather than a hardware problem, meaning that the brain is physically healthy but struggles to process information it receives from the body. My immediate reaction was shame. I had been off work for months, lost control of my limbs and was now being told it was psychological. Why couldn’t I control my brain? Had I been subconsciously making myself ill? I wanted to tell my brain to stop but it wouldn’t listen. But as I began to learn, I could distract it. Tapping out a pattern with my fingers or toes, as the neurologist had shown me, shifted my brain’s focus away from my tremor or seizure and stopped the symptoms.
I recently spoke to Hollie-Anne Brookes, a journalist and disability rights activist who also suffers from FND, after connecting through her article about her experience. From our conversation I have learned that my feelings were not unusual. “I did feel really ashamed… I remember breaking down to my mum and my boyfriend at the time and saying: ‘I’m so sorry.’ I felt the need to apologize so much for my diagnosis.”
According to consultant neurologist Jon Stone, who runs the website neurosymptoms.org, FND is one of the most common neurological diagnoses. The exact number of people affected by FND is unclear but it is believed that 50,000 to 100,000 people in the UK could be affected by the two most common types: functional seizures and functional movement disorders. According to a meta-analysis of 4,905 cases, it is particularly prevalent among young women yet few people have heard of it, including doctors. The FND support group FNDAction ran a campaign in 2022 to raise awareness of FND among frontline NHS staff, called #InformTheDoctor. FND has been historically under-researched, having been “marginalised” as an area of study in the 20th century. Enormous advances have been made in the past 10 years, improving diagnosis, treatment and understanding. Investigation is now ongoing as to why the disorder is more common in women and, indeed, what causes it.
The disorder affects how the brain sends and receives information. As humans, we have subconscious templates for reacting to situations. When we step onto an escalator, for example, our brain adjusts so that the escalator’s movement doesn’t unbalance us. FND is like stepping onto an escalator that isn’t moving – you can see it is stationary but your brain overrides your eyes and adjusts to its template, creating the lurching sensation. FND can present via a plethora of symptoms but the most common are tremors, seizures, limb weakness, reduced sensation in parts of the body, tics and dizziness. These are frequently accompanied by fatigue, pain, headaches and anxiety. Mark Edwards, professor of neurology at King’s College, London and FND specialist, previously wrote: “There has been historically a lot of emphasis on psychological trauma, or more broadly ‘stress’ as a triggering factor … However, this does not mean that all, even the majority of people with FND have had such experiences. It also does not necessarily mean that if such stressful life events have occurred that this is the direct cause of FND.”
As humans, we have subconscious templates for reacting to situations. When we step onto an escalator, our brain adjusts so that the escalator’s movement doesn’t unbalance us. FND is like stepping onto an escalator that isn’t moving – you can see it is stationary but your brain overrides your eyes and adjusts to its template, creating the lurching sensation.
Although not all cases of FND are triggered by trauma, Edwards goes on to say: “In my experience the commonest scenario at the onset of FND is the combination of a ‘typical’ physical event (illness, injury) and a period prior to this of hard work, a degree of fatigue caused by this and ‘normal’ chronic life stressors that affect many people.”
What we now know as FND has been scrutinized historically through clinical observation but has gone by many different names and levels of stigmatization: hysteria, nervous system disorder, conversion disorder or psychogenic or non-organic illness. Over the last century, the term ‘hysteria’ was replaced by ‘conversion disorders’ and this, in turn, has been replaced by functional neurological disorder. It is only in recent years that FND has become a recognized term and more thorough research into the condition has begun taking place.
Research has found a connection between FND and the stress hormone cortisol. Whenever I was stressed, tired or anxious, my brain went into autopilot and I would have a seizure. This loss of control of my body was terrifying and the fear caused my body to produce more cortisol, creating a debilitating loop.
I was spiraling downwards, slowly growing more disabled. The longer my FND remained untreated, the more habitual the symptoms became for my brain. Inevitably, those incorrect templates became more and more embedded. When untreated, the progression of FND varies between patients: the symptoms can remain mild and consistent or increase in severity to a point where a wheelchair is required or sufferers are unable to leave their homes. The diagnosis of FND was in many ways a relief – I finally knew what was wrong with me. But it also presented its own problems. Being diagnosed with a neurological disorder made it feel like I was making it up, or it was self-inflicted. I was embarrassed and ashamed by my diagnosis. If it was my brain causing these seizures then it was my fault, I thought. I must be having them intentionally. Patients commonly struggle to accept that such physical symptoms are psychosomatic. Dr Sandra Eriemo, a cognitive behavioral therapist at the National Hospital for Neurology and Neurosurgery, tells R29: “The patient knows the symptoms are real so it can be very demoralizing to think you are being told it’s all in your head. People think they are not being believed.” How the patient is told about the diagnosis is vital.
There is life-changing treatment available through the NHS. Hollie-Anne and I both attended a six-week program in the neuropsychiatry department of UCLH (she completed her treatment the week before mine started). We were taught that FND was not our fault and couldn’t be switched off without training. The treatment consisted of physiotherapy, cognitive behavioral therapy (CBT) and occupational therapy. We learned to identify the cause and triggers of our FND and how to regain control during flare-ups.
Being diagnosed with a neurological disorder made it feel like I was making it up, or it was self-inflicted.
It is common for FND patients to exist in a cycle of boom and bust. On the days where their symptoms feel more manageable they do too much, leading to a flare-up the following day and a negative impact on both the individual’s mood (following the burst of cortisol) and their perception of their ability to live a ‘normal’ life. The physiotherapy and occupational therapy worked on a graded exercise plan so that each day a patient would do slightly more than on a typical ‘bad’ day and slightly less than on a ‘good’ day, breaking the cycle to create steady improvement.
Patients are taught ways to manage their symptoms, both physically and psychologically. Alongside learning more about tapping techniques to distract my brain, I was taught to lean into the involuntary movement. If my arm was trembling, I would try and make that tremor bigger and more pronounced until I could control the movement of it, then slowly reduce the speed until stopping it. I learned that the seizures were linked to anxiety or stress triggers and was taught breathing exercises and meditation techniques to calm my nervous system and reduce cortisol production. Similarly, CBT worked to manage thoughts and behaviors that could be marring my recovery. Where required, psychologists were on hand to help patients identify and process past traumas. Through this six-week program, Hollie-Anne learned to walk again. I learned to manage my seizures and was able to return to work.
From the development of symptoms to GP appointments, specialist referrals, diagnosis and then waiting times for treatment, the process is a lengthy one. Following my referral, I waited a year and a half before being accepted for treatment. This was unusually quick, according to hospital staff and other patients I’ve spoken to. My proximity to the hospital meant I could complete the program during the pandemic as I could keep travel to a minimum; others I spoke to on the course had been waiting much longer, often several years. While someone diagnosed with FND could seek independent therapists in each of the above areas, it can be incredibly difficult to get the necessary referrals through the NHS. Even then, it is not guaranteed that the therapist will be familiar with FND or know how to treat it specifically.
Patients must believe FND is the problem before they’re accepted for treatment and not read the diagnosis as a dismissal of their pain. Sandra explains: “It is vital that the diagnosis is delivered in a way that makes clear the symptoms are real. Acceptance of the diagnosis is vital for treatment to be effective. It is not worthwhile pretending you accept the diagnosis in order to get treatment as [the treatment then] tends not to be effective.” Doctors reach a diagnosis of FND through a process of elimination and patients can feel like they’re only receiving the diagnosis because the doctor has run out of other options. My doctor could see my physical symptoms, name a condition and then prove he was correct by giving me an immediate way of stopping it. That showed me he believed my illness was real.
Training in how to recognize FND and communicate the diagnosis to the patient must be rolled out across the medical profession. The condition can be debilitating but the right treatment is transformative and can give people with FND, like me, their lives back.
Societally, we still divide ‘medical health’ and ‘mental health’. It is more accepted to discuss treating a physical ailment through medication than it is to explain we are treating a disability through therapy. FND needs to be more widely recognized to be destigmatized and eradicate the shame many of us feel around diagnosis. This will speed up the diagnostic process and help patients to accept the information, giving them the best chance of recovery.
The treatment, above anything else, starts with the diagnosis.
Source: refinery29.com, OCCY CARR