Why I’m Disappointed In The Lack Of Awareness About ME/CFS Almost 20 Years Post Diagnosis





By Emma Tierney in The Mighty.


We are 19 years on now from the year I was diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The year a GP said to me in the most patronizing of voices, “you need an exercise bike” during an appointment that I’d been carried into by my stepfather as I couldn’t walk or hold my own body up.

During the years I have lived with ME/CFS, this illness has seen me at varying levels. On one end of the spectrum I have been bedridden and completely unable to care for myself. A stage where I remember wondering how it was possible to feel so unwell and still be alive, every moment was excruciating and I literally felt trapped in my own body. This time saw me unable to feed myself, hold a conversation or sit up unaided.

I have also seen myself at higher functioning levels, stages were I can live a fuller life. Perhaps I’m able to take a gentle stroll in the countryside or meet a friend for a coffee, as long as I pace myself and take care not to over do it. At this level I can often appear perfectly OK to an outsider, especially with my hair and make up done, but beneath the surface symptoms and fatigue are always present. The slightest overexertion beyond my boundaries will see me relapse back into being unable to function once again.


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