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29th Jun, 2022

Support group founder offers lifeline to those with 'invisible illness'

A PERSEVERING Stratford resident with an invisible illness is offering a lifeline to those suffering with the same ‘debilitating’ symptoms.

Beckey Barton suffers from fibromyalgia – an incurable condition which causes ‘crippling pain’ and ‘unbearable fatigue’ – thought to affect one in 25 people. While the exact cause is unknown, recent research suggests erratic hormones cause the central nervous system to send unnecessary pain signals around the body.

The 37-year-old was diagnosed just a year ago but says she can trace many of the symptoms back to her childhood.

She told the Observer: “It tends to manifest as chronic fatigue and widespread pain, particularly neck stiffness. It hurts all over my body even in the little places like fingers and toes. Basically everywhere you have a tendon – I get it in my groin, under my arms, my ankles. It flares up everywhere.

“It makes you really sensitive to everything – noise can be overwhelming, light can be bright, smells make me feel sick.

“There are days when you feel better and so you get excited and most of us overdo it which sets us back. There are days where I can’t out of bed or days where I might do a bit and go out and about in a wheelchair or mobility scooter because of pain or fatigue. I feel like a puddle. I can’t hold myself up.”

Beckey, who was forced to give up her job as a youth worker, and more recently as a cake decorator, struggled with isolation. She decided to seek others with the condition only to find her nearest support group was Coventry.

She took matters into her own hands and set up a Facebook group for sufferers in the area whose members quickly grew.

Before long some 60 people from across Warwickshire, as well as Redditch, Evesham and Solihull, were finding much-needed support through monthly meet-ups organised by Beckey.

She added: “It is very informal and often different people drop in each month, but it is a lovely base to meet other people who are facing the same struggles and to be able to chat about life, to encourage each other and to share tips and of course, to have a good laugh at ourselves.

“Throughout this year many people who had previously felt alone and desperate, have found support and acceptance in new friends. It has given people hope and a light at the end of a very dark tunnel.”

And thanks to the group, members have also found other support including physio, financial advice, disability care and occupational therapy from the Citizen’s Advice Bureau in Stratford.

Beckey is hoping to raise awareness of the condition among others who may not realise someone they know has it, or understand its effects.

“The hopelessness and despair felt by most sufferers is exacerbated by the lack of understanding and compassion from others who surround them.

“You may not think that this disability affects you, but the chances are that you probably have a friend or family member, a colleague or employee or a neighbour, customer or client, who suffers with this condition on a daily basis. Your support and understanding would mean more to them than they could ever tell you.”

The condition is counted among other ‘invisible illnesses’ whose profiles are being raised with help from an international awareness day which was on Sunday (May 12).

The others include myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) both long-term illnesses characterised by extreme fatigue which affects daily life.

The day was chosen to commemorate the birth of Florence Nightingale who was thought to suffer from ME.

Search Stratford Fibro Friends on Facebook for more details on support.

And search Beckey Barton on Youtube to find her new vlog series.

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