What I Need People to Understand About Severe Chronic Fatigue Syndrome

“Oh, so you have chronic fatigue syndrome (CFS). I know plenty of people with CFS. They can work part time, and need a rest now and then, but they really try to live life to the fullest.” The lady in the shop smiles knowingly at me. My throat begins to choke up. This is not my experience with CFS/ME. 

I am one of the hidden ones: the estimated 25 percent of people CFS/myalgic encephalomyelitis (ME) who are deemed “severely unwell;” that is, must remain at home, in a wheelchair, or in bed. We are your neighbors, daughters, brothers and friends. We may not follow the expected narrative of someone with CFS/ME — we are excluded from society by the very nature of our condition. And we demand not to be forgotten.

Like most people, I had a vague notion of what CFS/ME meant before becoming unwell — overwhelming fatigue, general malaise, intolerance to exercise. Nothing could have prepared me for the reality of living with severe CFS/ME. In a timeframe of mere weeks, I slid from being a university student who volunteered at several organizations, to someone who struggled to attend one hour of class a week. I would cry in frustration, staring at my timetable, knowing that the assignments and coursework that were once completed with ease had become insurmountable tasks. My social life became non-existent. I spent most of my days in bed, staring out the window at the tree outside my bedroom. That tree became my comfort and friend. My precious violin, which I had played with since the age of 5, sat in the corner, gathering dust.

My health progressively became worse, as my parents and I visited countless doctors for answers. The best I could hope for was a simple “I don’t know.” I was told there was no one who would help me. Meanwhile, I struggled to leave the house once a week. I wondered whether my struggles would have been taken more seriously if I was a man. Surely then I would not have been accused of being a drama queen.

How was I to react when a well meaning stranger assumed my illness was one of mere inconvenience?  The idea of living without 24-hour care seemed like a pipe dream, so the suggestion of working with this illness felt like nothing more than a cruel joke. Doctors could not help me, as they seemed to be stuck in a paradigm of CFS/ME as no more debilitating than the common cold. Specialists in the nearest capital city would only treat those who were well enough to travel to them.

Finally, after some ill advised “treatment” and medication from health professionals, I became fully reliant on my bed. The agony of being trapped in one’s own bed is impossible for an able-bodied person to conceive. My body slowly shut down, one faculty after another. Earplugs were in permanently, blocking sound which pained me; my blinds were shut to keep out the light which burned my eyes. Showering, or being showered, were impossible tasks: I could hardly sit up long enough to go to the toilet, so how on earth could I make it to the shower? My mother became my nurse.

The impact of ill-informed views about CFS/ME are not only hurtful, but can much worsen the severe cases. If the medical professionals who treated me had recognized my case as severe from the very beginning, would they have prescribed such inappropriate treatment? Would I ever have had to stay in bed or been traumatized in the hospital, if doctors recognized the difference between severe and mild-moderate CFS/ME and treated me accordingly? If the nature of CFS/ME was better understood, no patient would have to struggle from “treatment” that harmed, rather than helped.

Laura Hillenbrand, author of “Seabiscuit” and “Unbroken” and prominent figure with CFS/ME, once said, “Fatigue is what we experience, but it is what a match is to an atomic bomb.” When doctors assume I can work part time and live independently, part of me wishes it was true. Those with severe CFS/ME experience the full atomic bomb, the complete annihilation of every bodily function which tears our lives to shreds. The refusal of so many to accept our experience is akin to a denial of reality. Who wants to admit that this illness, which can turn a match to some people’s lives, can also cause such devastation to so many? 

This piece was not written to diminish the real and unique challenges faced by those with mild-moderate CFS/ME. People with severe CFS/ME will never receive proper treatment until their cases are more widely recognized. Next time you see someone who has CFS/ME, please don’t assume they are capable of doing things just because your other friend with CFS/ME is. Listen to their story with an open heart. The more who understand and recognize severe CFS/ME, the easier the lives of those who have it will become.