Chronic Fatigue Syndrome – Not simply ‘feeling tired’

There are many hidden disabilities with more becoming known every year.

Despite hidden disabilities becoming more widely acknowledged, some sufferers of Chronic Fatigue still feel people don’t accept it as a condition.

Chronic Fatigue Syndrome, also known as ME, is a long-term illness with the most common symptom showing as extreme tiredness.

20-Year-old Adele has suffered from Chronic Fatigue for 7 years and still struggles with people’s misconceptions of the condition. She stares sadly past me and says: “If you meet someone new, they make you feel so little because they don’t understand.”

She describes her school years, saying that she had no help and that both students and teachers did not understand the level of fatigue and pain she felt.

“Students at school would just call me lazy.”

“I’d get called into the office and I’d get told off because of my attendance saying that I was going to fail everything if I didn’t come in.”

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Sociologist, Ben Baumberg Geiger, has done specialist research into people’s attitudes towards those with disabilities. He tells me how his research has revealed that many people with disabilities feel people are constantly judging them.

He describes how sufferers generally feel like people are “constantly trying to decide if you’re really not as capable of doing things as you say you are, whether you’re really worthy of support or not.”

He talks of a hierarchy of ‘deservingness’ in terms of disabilities. He explains that the people in his research mostly associate those with clearly visible disabilities as having more deservingness of compassion than those that you cannot see.

Physician’s Associate, Amun Dhillon, has experienced patients with Chronic Fatigue Syndrome and described the process of diagnosis. She said: “You run various tests, majority of them come back normal, some can be abnormal.

“Symptoms of Chronic Fatigue, is basically in the diagnosis: fatigue, that is ongoing and you can’t pinpoint a reason (anaemia or thyroid) so it’s just tiredness every day!”

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Amy, 21, also suffers with Chronic Fatigue. She tells me how every day can vary for her.

“A bad day it can affect me by keeping me in bed because I’m too tired and in loads of pain. Or on a really good day I’ll just kind of be a little bit achy.”

She goes on to say how she feels judged and smiles wearily as she describes how her condition entitles her to use disabled toilets.

“There’s that sort of judgement that you feel, because people are like ‘well you look normal, why are you going in there? Queue like the rest of us.’”

“On a train I won’t ask for a seat if they are all full, because I’ll be like ‘oh I don’t look disabled enough’, I’ll just sit on the floor.”

Ben Geiger summed up what society can do to include those with hidden disabilities. He said:

“What you want is a little quiet voice on your shoulder when making a judgement, that just says ‘yeah it may look that way to you, but you might be wrong, what else might be going on there?’”