Language can hurt
“The way language is used can frustrate or upset people who have ME/CFS.”
This is one of the discoveries made by the Working Group who have developed the draft English ME/CFS Delivery Plan:
My full reality: the interim delivery plan on ME/CFS
“This insight comes from personal experience, gathered by people with personal experience who have participated in the development process for the delivery plan on ME/CFS. The evidence has not been validated by the government but represents a flavour of what we have heard through our meetings and workshops.”
They give examples of how life with ME/CFS is often misunderstood and can lead to hurtful comments:
Chronic Fatigue Syndrome as an alternative description of ME/CFS
“I’d love it if I could stay in bed all day“
“You’re just lazy” “Yeah, I’m very tired too“
Normal experience of illness is that people recover
“My mum’s friend had that and she recovered“
“You should aim for full recovery“
“We can get you back to normal with some time and effort“
The misconception that ME/CFS is a mental health condition, ‘all in the mind’ or that you can get better or overcome symptoms by the way you think
“Maybe you should ask your doctor to put up your dose of antidepressants“
“If you thought differently, you would get better“
“It helps to have a positive attitude“
The fact that there is no medical test to prove that someone has ME/CFS
“good news – the tests say there is nothing wrong with you“
“you are lying“
“maybe you are depressed about something“
‘Post-exertional malaise’ or PEM is a technical term which most people will not have heard of
“You did nothing yesterday, why are you still in bed?“
Symptoms of ME/CFS cannot be seen
“You look normal” “You just don’t want to work“
“You don’t need the wheelchair because I saw you walk last week“
“No, you can’t have a home visit“
People with mild or moderate ME/CFS can manage their energy to do something out of their ordinary routine, as long as they rest before and afterwards as necessary
“How can you go for lunch with someone, but you can’t go to work for 8 hours?“
“The tests are only available in the mornings“
“We need you to commit to attending weekly“
Read the full report: Language use in relation to ME/CFS – a personal perspective
