Symptoms
Dissociative seizures
Paralysis
Vaginismus (painful contractions of vaginal wall muscles)
Constipation
Slurred Speech/ Tremors
Pre-diagnosis
As the first Covid-19 pandemic lockdown ended, I was 42 years old. I had become wheelchair-bound and completely dependent on my now ex-husband, from taking me to the toilet, to bathing me, to moving me from the bedroom to the living room. I will never forget his care, for these were the darkest moments one can imagine.
I had just come out of three months of hospitalisation at two psychiatric hospitals. This was my fourth burnout and by this stage it had become clear that taking pills to keep numb would not work.
Interactions with healthcare
It was obvious to me over this timeframe that:
- My medical history was becoming increasingly more difficult to describe
- I had been labelled as ‘difficult’. It seemed like a problem for the doctors if I simply talked back or asked questions.
I had an A4 bullet-point list with my symptoms, my surgical interventions, and my medication. Most doctors brushed it aside and treated me like a ‘hysteric’ who could only be making up all such an extensive list. I felt condescended. Because I struggled to find anyone who could give me an adequate explanation, I saw many different doctors.
I can now clearly see I had suffered iatrogenic harm – I had several orthopedic and gynaecological surgeries that were not needed, even my hip was replaced to no avail. I was told by two London doctors, (the ones from private, fancy clinics), that I should go home and take analgesics until I die. That evening, I was thrown out of the clinic and fell on the pavement, covered by the heavy rain. I wanted to die.
Let us come back to “the list”. I felt like my body, every system, every organ, was fighting on all fronts. I had the abysmal seizures and hours-long paralysis attacks, I had vaginismus, which prevented me from having sex for years on end, I had the belly of a 9-month expectant mother of twins, two three weeks would go by without going to the toilet, apparently, there would never be a solution for a digestive system that refused to co-operate, restless legs, the slurring, the tremors that made writing impossible, you name it…
What helped: Getting a diagnosis
So, in that summer, short of being 43, dreading being told that I had multiple sclerosis or ALS, I faced another private neurologist who told me he would diagnose, but he explicitly did not want me as his patient. He told me I had something called Functional Neurological Disorders and that I should go and look up neurosymptoms.org before saying goodbye, charging £275 for a 15-minute appointment.
So, a timeline was established. It took 29 years to be diagnosed correctly and it felt somewhat bittersweet. However, recognising my symptoms on the neurosymptoms website helped. I finally had an explanation for being and feeling “different” for most of my life.
Having a name for all the discrepant symptoms I felt did feel positive in the sense that I could now approach these conditions more rationally, and start planning, even with all the limitations, how I wished my life to be. It was a starting point to move forward toward that goal. It felt empowering.
What helped: having a goal
I had been on the psychiatric ward because I was suicidal. However while I was there I realised it gave me purpose to listen to the other mostly young patients, converse with them, hug them in mutual understanding. I had never seen myself as a victim, but talking with others, for the first time, I expressed my feelings of abandonment and abuse as a child.
When I got the diagnosis of FND, I realised that it is time for medical professionals to be well informed, so they can take a more knowledgeable, compassionate, and pro-active approach. I decided that even if it took ten years, I would dedicate myself to actively helping others with Functional Somatic Disorders.
What helped: taking practical steps forward
I decided that I wanted to live with a smile, to not let these conditions define who I am. I started by moving back to the country I was born, to a very green and peaceful city. In part to have better and less expensive care, in part to eventually have quality of life.
I also decided to return to my roots in academia, which is something I had always loved. I embarked on a new degree, a BSc in Psychology of Health, with the aspiration to create a community project to provide free psychological care to those who cannot access (or afford) FSD-specialised care.
I was on the path to acquire more knowledge, avidly so. That would be part of my ammunition!!!
What helped: acceptance and routine
Smiles and cries still take their turns. I still never know how I will wake up, let alone how I will be feeling at 12pm! But, I’ve learnt to accept the situation.
I have realised that I am a whole person, there are challenging and dark sides, but there is also the side that smiles at the world, the one who draws strength in helping others, or who enjoys being one in nature. Keeping this side of me in mind, has been able to give me strength, like a warm, protective cover when the going gets tough.
I’ve also learnt that having a routine is key, even if I am not yet perfect keeping to one.
It took a year, but I started walking shortly and slowly, on and off and having a modicum of social life.
What helped: connecting with others
Being invited to participate in the BodySymptoms project was a new lease of life. It was the piece of the puzzle I needed to get going in a very practical, constructive and agency-fuelled manner. I met other individuals with FSD. With them, I felt able to bare my emotional self throughout the 32-year journey with symptoms I had. There was exchange and the feeling of not being alone.
