So I haven’t found self-isolation too hard, stressful or different from my normal life. Why? Because my life changed when I was officially diagnosed with Myalgic Encephalomyelitis or Chronic Fatigue Syndrome in 2013.
Although this illness is INVISIBLE we are not.
Chronic Fatigue Syndrome is an extremely misunderstood invisible chronic illness, which has led to many doctors to denying the disease and patients. May is home to Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome (CFS/ME) Awareness Day — I want to share my battle in the hopes to shed more light on this stigmatised condition.
A mislabeled illness?
I was officially diagnosed with Chronic Fatigue Syndrome in 2013, when I was 15 years old. The profound fatigue started almost overnight. The kind of fatigue that no matter how much rest you get, you never feel refreshed. Unlike many, my fatigue did not start after a virus like the Epstein–Barr virus. All my blood test results were normal. No life threatening reason was found to account for this change in events, therefore doctors stopped investigating my condition further.
Although my Chronic Fatigue Syndrome was somewhat misdiagnosed, as I later found out I had other chronic illnesses which were going untreated and undetected. I think part of the reason doctors didn’t explore my symptoms further was due to the ‘chronic fatigue’ label. This diagnosis felt like a label which wrote me off to many doctors as a lazy, over-worked and stressed high school girl simply dealing with the pressures of adolescence. I was assured by condescending doctors that my fatigue would get better when I left the pressures of high school. But I eventually became bed bound at 18 — a year after I finished school.
Chronic fatigue as a punchline
Chronic Fatigue Syndrome is no joke, it is a seriously debilitating disease that has been laughed about by many because of the lack of awareness as well as it’s name. Ricky Gervais made it a punchline in one of his shows claiming Chronic Fatigue Syndrome was the medical term for “I don’t feel like going to work today.”
But sufferers do not have a choice or complete control over their own bodies. I have encountered many doctors who are not up to date with research telling me “it’s all in your head”.
When I finally received my diagnosis, I was almost hesitant to tell others because I would often encounter people saying “oh, so you’re just tired all the time?” But the tiredness of Chronic Fatigue Syndrome doesn’t even begin to compare to ‘feeling tired’. It is not something that is fixed by having a few coffees or taking a Berocca. There is a difference between being tired from a busy day or stressful life and being so fatigued I needed assistance to walk to the bathroom.
What is ME/CFS?
Myalgic encephalomyelitis or as it more commonly known Chronic Fatigue Syndrome is difficult to diagnose yet it is estimated to impact at least 15–30 million people worldwide. The main characterising symptom of the disease is “post-exertional malaise [PEM], a reduction in functioning and a severe worsening of symptoms after even minimal physical or cognitive exertion.” Diagnosis usually happens when the fatigue has persisted over 6 months.
Feeling tired and being chronically exhausted are two different things. The best way I can describe my fight with Chronic Fatigue Syndrome is that it is similar to severe jet-lag. The type of jet-lag you get coming back from a long overseas trip. It’s that feeling when you sleep so much but you do not feel any better. The type of tiredness that leaves you confused and your brain fogged.
But in saying this, like most diseases, people can experience them on a spectrum: mild, moderate or severe. Throughout the last 7 years with the illness I have experienced levels of all three. Approximately, one quarter of chronic fatigue suffers become bed or house bound at some point with their illness.
Like me, some patients with Chronic Fatigue Syndrome are lucky to find the potential cause of their invasive fatigue. Meaning they find out they suffer from another health condition masquerading as Chronic Fatigue Syndrome and this fatigue is a side effect of their other illness. But many patients do not find a root cause. Studies have suggested key differences between Chronic Fatigue Syndrome patients cell function compared to average healthy individuals. Research indicates Chronic Fatigue patient’s cells may no longer function properly. Although it is a recognised illness, the number of doctors who still do not believe in it or trained in it is frightening. And the number of co-workers, family members, teachers or friends who assumed I was avoiding work has been unbearable.
This illness is invisible but it’s sufferers are not. Awareness is needed and research is required so the medical gas-lighting and stigma of Chronic Fatigue Syndrome can come to an end.