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To Those Who Think My Chronic Fatigue Is a 'Gift'

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I have severe myalgic encephalopathy (ME), which amongst the many different symptoms I experience with this illness, chronic fatigue plays a predominant part in my day-to-day life. From feeling brain fogged due to fatigue, through to the flu-like malaise and lethargy many people with ME experience. ME is often brushed aside as a chronic fatigue condition, but it is, in fact a neuroimmune condition.

Sometimes, people see my chronic fatigue as a “gift,” as my fatigue is so severe I am unable to work, be in education or even volunteer. Most of the time, I have to lie reclined to ease my symptoms, often in the darkness and the quiet. Due to the severity of my ME, I am housebound (and sometimes bedbound). Some people see being able to stay in all day as a “gift” and that I can leisurely spend my day doing whatever I want with no constraints. But, to me, this is far from the truth. Instead, I would say my fatigue and ME symptoms are more in charge of me than I am of them. As a result, my days are not spent at my own leisure, but more just trying to stay afloat until bedtime when I can crash into bed.

I would give anything to be able to return to education and my volunteer work, building up to a point where once I’m finished with academia, I can start work in my longed-for job as a child psychotherapist. Unfortunately, I have no idea when that day will come, or even if it will come, which brings a deep sadness.

I grieve for my old life, even after all these years of living with ME. There are so many things I miss, and most are not big things, but trivial things like ballet, yoga, going for coffee with friends, sitting in an interesting lecture or kicking about in the fallen autumn leaves.

Chronic fatigue is not a gift. Some people think chronic fatigue is just about feeling tired a lot, but it’s much more complicated than that. Fatigue clouds your brain so you can’t think straight and you become easily forgetful and get frustrated with yourself over minor things. Your body becomes tired that at times you feel like dead weight, and even lifting your head to sip a drink through a straw is a challenge. Yes, you do feel tired a lot, but it’s a helpless tiredness as sleep often doesn’t make it better and, in my experience, you wake up feeling more tired than how you felt when you went to bed.

I wouldn’t wish my chronic fatigue on anyone. It’s not a novelty and there are not perks or days spent leisurely doing as I please because my fatigue is far from being a “gift.” I wish people understood the real constraints of having chronic fatigue.

Unsplash image by Erik McLean

Originally published: April 20, 2021
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