It was with apprehension that I clicked on the square icon for ‘Afflicted’, Netflix’s new documentary series. The series documents the lives of those with chronic, debilitating illnesses that have been largely dismissed by the medical community. By watching ‘Afflicted’ I was aware that I would be revisiting past events that still feel raw. But content like this is compulsory viewing for someone like me, and I greedily consumed this moving and very necessary series.
My own symptoms arrived two years ago, dramatically. I had just finished the final year of my Bachelor’s degree and was living in the Netherlands. Days after handing in my thesis, my legs began to tingle, not just sometimes, but constantly. Odd, but not too alarming. I am vegetarian, so perhaps it was a B12 deficiency?
Over the space of a few days the tingling became a painful prickling. Although I was due to return home to the UK in a week’s time, I knew that something was seriously wrong and had to return sooner. The flights home were too expensive, so I booked a car share for the next day. At the time I lived in a Dutch student party house, and we were due to throw a massive end of term celebration the night before my premature journey home. I had no choice but to continue as though nothing was wrong. Dress up and drink up.
The next day the drive back to the UK should have taken five hours, but instead it took eight due to delays at borders and crossing the Channel. I maintained a happy and healthy facade, yet on the journey home, as we drove through Belgium, France and the UK, my symptoms worsened exponentially. The pain spread throughout my skin, concentrated particularly in my hands, feet and face. I experienced a spectrum of pain: burning, prickling, stabbing, scratching, tightening. The large fibre nerves in my arms and legs began to pulse, as though electricity was shooting through bone and muscle. After arriving home, I went straight to A&E, but the painkillers I received had little effect.
Over the next two months I amassed quite the collection of bizarre symptoms. My tongue began to twitch uncontrollably and my mouth became numb. Eventually all my muscles started to contract sporadically. I developed a phantom sensation of a ball stuck in my throat. My ears began to ring with tinnitus, several disturbing sounds overlaying one another.
My nervous system had severely malfunctioned, yet MRIs, nerve conduction studies and skin biopsies showed nothing. I saw GPs, neurologists, psychologists, ENT doctors and functional medicine specialists. I ultimately had to come to terms with the fact that I may never receive a satisfactory diagnosis.
With a label comes a degree of legitimacy, and a proper diagnosis introduces you to a community of other patients offering support and solidarity. The series ‘Afflicted’ does a good job of demonstrating how isolating and lonely these misunderstood illnesses can be.
Living on the fringes of conventional medicine, or having a condition that spans multiple departments, means that finding a treatment that addresses the fundamental illness underlying the plethora of diverse symptoms becomes your life’s mission. Illnesses like ME, electromagnetic sensitivity and mold sensitivity are woefully understudied, and the onus often falls on patients to seek out a treatment that helps them regain their quality of life.
Conventional medicine has a tendency to dismiss complex and poorly-understood illnesses as psychosomatic, triggering a dangerous pattern of distrust between patients and their doctors. Once medical professionals accept the existence of these strange and elusive illnesses, patients will no longer be driven to quack medicines and seduced by promises of an ultimate cure.
I am lucky, I have made a significant recovery and now live only with the odd symptom. However, I still feel a strong affiliation with the patients in ‘Afflicted’, and hope that one day these debilitating illnesses are accepted by the medical community.