The ‘deeply misunderstood neurological condition’ affects more than 250,000 people in the UK
A Somerset mum has spoken about how an illness has left her ‘a prisoner in her own body’.
Hayley Date, 45, from Bridgwater, has Myalgic Encephalomyelitis (ME), an illness which presents as unrelenting exhaustion and profound pain.
ME is a neurological condition which causes extreme exhaustion, pain, brain fog, and a variety of other symptoms, such as a malaise made worse by exertion.
A spokesman for The ME Association describes ME as a “deeply misunderstood neurological condition” that affects more than 250,000 people in the UK.
One in four are so severely affected that they are rendered housebound or bedbound – with some even reliant on tube feeding.
Sufferers are often confined to their beds, unable to walk, and need help even to shower – an action that could then lay them low for hours, or even days.
Hayley, mum to Harvey, 15, who also has ME, and Ella, 10, revealed how she started experiencing the symptoms of ME on New Year’s Day in 2015 while sales shopping but was only diagnosed months later.
She said: “I feel like I am a prisoner trapped within a body that just doesn’t work anymore. It is living hell every day. My mind wants to do things, my body just won’t let it.”
“It is a constant battle every minute of every hour of every day not knowing whether you will be able to do something. I have become lonely, isolated and not able to do so many things that I used to.”
|“Plans can never really be made because I haven’t got a clue whether I will be well enough.”
“I now live my life mainly housebound. The same four walls day in, day out, drain any positivity you can try and muster.”
“But I don’t want or need your pity, I just want your understanding.”
The 45-year-old is sharing her experience ahead of ME Awareness Week, which runs from May 6-12.
Its campaigning charity, the ME Association, is aiming to demonstrate how the illness has had a devastating impact on people’s lives.
Hayley claimed she has had a negative experience dealing with GPs and often feels frustrated by having to “explain everything all over again” with multiple medical professionals.
“They haven’t got a clue and so I am left to deal with everything alone,” she added.
The mum aims to end the stigma and myths surrounding ME, which at its worst, leaves sufferers to endure a tortuous existence.
A parliamentary debate last year heard how people with ME are more than six times likely to commit suicide.
|“There is a hell of a lot of stigma still attached to the disease out there.”
“With an illness like ME your face doesn’t give the whole picture.”
“People can be very quick to judge and I guess that is human nature.”
“I just find the whole area of ME unfair.”
“We are given an illness that drains our energy and yet we are having to fight to be heard.”
“We are having to fight to get the government to give us much needed funding for biomedical research.”
The Real ME campaign has received more than 400 photos, video clips and contextual stories from people desperate for treatment that works.
ME Association chairman, Neil Riley, said: “To look at these people – men, women, children – and their individual tragedies only further serves to ask the question: ‘Why is ME still not being investigated with the urgency it so obviously requires?’”
“We want to tell the world about the REAL People that suffer because of this real disease – day after day, week after week, year after year, and in some of the cruelest cases, decade after painful decade.”
|“The most severe sufferers are often the most hidden.”
“A lot of people give up and their families are left fighting, so they can’t raise awareness.”
“People find it hard to understand, with the medical advancements, how something like this can happen in this day and age.”
“We desperately need more funding towards research and give people a fighting chance of reclaiming their health.”
Dr Charles Shepherd, Hon. Medical Adviser, ME Association.
For more information on ME, or to support research through donations, visit the ME Association website.
The ME Association
Real People. Real Disease. Real M.E.
We are a national charity working hard to make the UK a better place for people whose lives have been devastated by an often-misunderstood neurological disease.
If you would like to support our efforts – particularly during ME Awareness Week – and help ensure we can continue to inform, support, advocate and invest in biomedical research, then please donate today.
Just click the image opposite and visit our JustGiving page for one-off donations, to establish a regular payment or to create your own fundraising event.
ME Association Registered Charity Number 801279