An Express story about the journey of a woman living with chronic pain and fatigue in Guernsey has prompted efforts to set up a support group in Jersey.
Last month, Express shared the experiences of Guernsey fibromyalgia-sufferer Nicola Durkin, who said that she felt “let down” by her employer, the island’s government, and called for more support on behalf of people with the debilitating condition.
Her call has reached the shores of Jersey, prompting Enable – a charity which seeks to represent all islanders of all ages with all types of disability – to seek to set up a support group for people with this condition, as well as myalgic encephalomyelitis, chronic fatigue syndrome, long covid, and their supporters.
An initial, exploratory post on Enable’s Facebook page prompted dozens of Islanders to voice their support for the idea.
Enable chief executive officer Sean Pontin said: “As a pan-disability charity, we are keen to support anyone living with a long-term condition, especially the less well-known or understood ones.
“So, we decided to try to bring people together to chat about their experiences and to see what we might be able to do to raise awareness and offer more support.
“We have arranged an initial meeting for Friday 12 June at 1pm in our offices at de Carteret House in Castle Street.
“Anyone living with myalgic encephalomyelitis, chronic fatigue syndrome, fibromyalgia, and long covid-type conditions, or supporting someone with them, is very welcome to join us.”
He added: “We know the time might not suit everyone and not everyone will be able to physically attend, so people will be able to join online also.”
“There is no group or network to provide that peer support”
Luke Outhwaite, who is a clinical coder at the Hospital, lives with fibromyalgia and said he would very much welcome a stronger support network in Jersey.
The 38-year-old said: “There is no group or network to provide that peer support, and in terms of hospital support for my condition, there is not a specialist nurse or anybody like that who you can talk to.
“That would be great because I’ve been told that the pain management centre has an open door, but every time I go there, they do a scan, and they tell me that they can’t see anything that’s wrong.
“They say that they think it is my fibromyalgia, and they say they will give me some physio, which makes me worse – so, I just have to leave it.
“That said, on the whole, my experience with Health is positive.
“My condition is just one of those things where they don’t really know what to do, so they cannot offer a huge amount of help.”
“I’ve been left in the dark since being diagnosed”
Mr Outhwaite has lived with fibromyalgia for more than a decade.
“It is a collection of symptoms, so mainly chronic pain and fatigue related, but more specifically neck pain, back pain, wider pain, migraines, irritable bowel syndrome and high levels of anxiety and depression,” he explained.
“I feel that I’ve been left in the dark since being diagnosed, which in itself is a long process – it was one of exclusion and being sent down several routes at the Hospital before they landed on managing me via the pain management service.
“They were very good at providing some education and promoting self-actualisation in light of the situation: having a bit more self-compassion for the condition.
“Having spoken to others in a similar situation, I get the same vibe: that you feel like you’re making it up along the way, because no one can really tell you what is wrong with you.”
You feel like you’re making it up along the way, because no one can really tell you what is wrong with you
Luke Outhwaite
Mr Outhwaite said that his fibromyalgia had forced him to take time off work in the past, and it had put a strain on his personal and family relationships because it was tempting to feel like a burden on them.
He added that although it was a non-curable condition, he had managed to step off “the rat wheel of medications” and had finally managed to reduce his symptoms through medicinal cannabis, although through a private prescription.
“I am able to have a better quality of life, go about my day-to-day activities and support my family,” he said. “It’s been a breath of fresh air; it just a shame that it costs so much.”
Mr Outhwaite said that a support group in Jersey would be “really useful” in allowing sufferers to “exchange ideas and experiences with others in a similar situation”.
“Particularly, there are not many male sufferers who either verbalise it or have been diagnosed, and are maybe living with the condition unknown to them. But just ‘manning up’ is not the answer,” he added.
GET INVOLVED…
The first support group meeting will take place on Friday 12 June at 1pm in the Enable offices at de Carteret House in Castle Street.
Islanders can find out more information or let the charity know they are joining by emailing info@enablejersey.org.