It was 4 P.M. in the evening on a clear day in March of 2015. I slowly opened my eyes after what seemed like a battle between my dream life and reality. I got out of the bed in my university hostel room, got dressed and slowly headed out to grab the first meal of the day. There was still light outside. ‘Not too bad. I can still put in a few good hours of work,’ I thought to myself. But alas – in two hours, the extreme fatigue and fogginess started to set in once again! I succumbed and retired to bed – this time staying awake with an inability to move till 7am the next day.
The wakeful nightmare of a dozen symptoms – weakness, the inability to concentrate or remember facts, the tingling & numbness in my hands and feet, the headaches, the nausea and fatigue upon exertion or ingesting food started from September 2014. It resulted in a limited mobility to do household chores (showering included), and led to broken relationships. I was called lazy by close friends, as supposedly I was ‘faking it’ all. To make matters worse, I was prescribed antidepressants for Generalized Anxiety Disorder by doctors. It didn’t seem right, and did not relieve me from my ailments.
It didn’t seem right!
As someone who is always curious of the human mind and body, I began to question my symptoms, and eventually my doctors. The physical and neurological symptoms were disabling and outside my will and mood. It did not feel solely like a psychological illness. There had to be an explanation. But who would listen to me? Soon enough, I could barely pass my exams to graduate from college. I moved back home to a small town in Kerala, and decided to investigate through the right choice of doctors, doing the right tests and talking to people on the internet. The question I started with was, “How did my body decide to go wrong and wage a war against itself? Could I place a name to the enemy that I was fighting?”
It appears that there is a name to this enemy, and it has taken over the identities and bodies of an estimated 17 – 30 million people worldwide. After a myriad of tests (with no concrete results) and doctors, I eventually narrowed my diagnosis with the help of a humble physician. It was becoming clear that this was Chronic Fatigue Syndrome (CFS). It was not a pretty diagnosis, and soon the medical community abandoned me because there was no case. As per their books, they could not prove that I was sick. The only relief was the collective voice from hundreds of patients who supported each other on online platforms like YouTube and Facebook. If not for them, I would still be questioning myself. It was really difficult to accept and move past family and friends who knew little of the condition and still believed it was all psychological. And then of course, the majority of doctors who continue to believe my illness does not exist!
Was this really true though? Is CFS made up?
Absolutely not! And there are decades of history to prove how it has been stigmatised, under-researched and under-funded across the world.
The WHO has classified Myalgic Encephalomyelitis (commonly referred as ME/CFS) as a neurological disease. Yet its status-quo remains doubted amongst medical professionals in India and in other parts of the world. A major contribution to this invisibility comes from the Centre for Disease Control (CDC) in the US who evaluated an epidemic outbreak in the 1980s in Lake Tahoe, Nevada. There were many patients (mostly women) strewn across communities who complained of symptoms that fit the criteria of ME. However, the CDC team’s lacklustre approach towards finding a cause resulted in the coining of a new term – Chronic Fatigue Syndrome. It was vague, and the criteria for diagnosis was loose. The triviality of this new name has given the world a wrong perception. It has resulted in researchers being disinterested in finding a cause, and health agencies overlooking the need to fund the study of this illness.
However, amidst the trauma from lack of medical support, one of the heart-warming gifts I received is the large community of fellow warriors online. ME/CFS patients have turned towards advocacy and activism, gained enough knowledge to share and support each other intellectually and emotionally. They care, and restore self-confidence to stand up and fight for another day. These are the people who helped me to rebuild and reshape my lost identity.
But is there hope beyond patient-to-patient support in this world for us, or will we continue to be ignored by hospitals and doctors?
Fortunately in the last decade, there are a few strong foundations and research groups in the US and Europe that have emerged to collaborate and race against this condition. The aim is to find a biomarker for diagnosis, and explore potential treatments from existing pharmaceuticals. Even in this feat, patients play an important role. One of the patient supporting networks called MEAction is responsible for the global campaign for visibility named #Millionsmissing, held every year on May 12th for ME/CFS awareness day. For a community that is severely restricted to indoor spaces, the campaign has been especially difficult yet important to raise awareness to doctors and public health officials.
This year is special. With everyone being forced to live indoors, to work and socialise remotely, it is crucial to let the world know that invisible illnesses like CFS and Fibromyalgia often push us to live our everyday life very much like the lockdown. Unfortunately, the lockdown has made us more vulnerable. Suffering with an invisible disability, we are being ignored once again and put at risk during this COVID-19 phase. We need to let the world know it’s high time they wake up. They need to see that if they are at a risk from this dreaded coronavirus with no protection to prevent it, they are equally at risk from the long-lasting impact of viral infections that can result in chronic illnesses like ME/CFS. This is important to them, as much as it is for us. If not for a solution, all we ask is the willingness to listen.
Looking back through the last six years from the start of my illness, I realise that the only reason I could survive is through the support and empathy of a few. And I hope that my fellow warriors can find this too.
Together, we can hope for the society that realises that our lives are equally worth protecting during this pandemic, and beyond.
Michelle George is a ME/CFS warrior, who is also gluten sensitive. She aspires to do research in the field of neuropsychology one day and can be reached through Twitter.