Anne-Marie’s ME message
PUBLISHED: 12:30 10 May 2012
CHRONIC exhaustion, aches and pains and often being bed-bound are just some of the things 25-year-old Anne-Marie has to endure with her ‘invisible illness’.
In an effort to raise awareness of her condition, myalgic encephalomyelitis (ME), Anne-Marie Large has spoken of the pain behind some of the comments she has received from those who have called her ‘just lazy.’
Action for ME – the UK’s leading charity for people with the illness – has released a report called Ignorance, Injustice And Neglect, about the lack of help given by NHS specialist services for people with ME.
It states more than a third of primary care trusts in England do not commission specialist services for ME patients, or cannot confirm they do.
Anne-Marie moved in with her husband Sam, aged 22, in February 2009 but soon after contracted glandular fever. She was diagnosed with ME six months later and Sam is now her full-time carer.
Anne-Marie, of Hythe Wood, Cheddar, said: “Glandular fever triggered it and I never got better. There are lots of things that cause it but one is that your body never gets over a virus.
“On a day-to-day basis I deal with chronic exhaustion, aches and pains, severe brain fog, which leads me to constantly repeat myself, and I struggle with walking.
“I’m often bed-bound if I have a bad day or am in too much pain.
“I use a wheelchair when I go outside and people can be quite judgemental when they first see me hobbling about. They tend to stare and I think they wonder why I am even using it.
“It’s difficult because it’s not like I have a broken leg for everyone to see, it’s almost an invisible illness.”
Anne-Marie, who is now studying an Open University degree in creative writing, said one of the things she would like to see changed is people’s understanding of the illness.
She said: “People assume because you can’t see it, it’s not there.
“A lot of people think it’s just tiredness, but it’s a lot more than that. So many of my friends have said I’m just lazy or wanted time off school. I’ve lost friends who have not understood my illness.”
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