Campaigners have called on the Government to recognise fibromyalgia as a long-term disability.
It is estimated that tens of thousands of people in Ireland suffer with the condition, which is characterised by widespread pain and fatigue and can be difficult to diagnose.
College student Merissa Appel, 25, lives with fibromyalgia. She says she is in constant pain and finds everyday activities a challenge.
She said: “It’s an up and down feeling, one day I could be fine and I’d have very minimal pain and then other days I can feel as if a ten-storey brick building has fallen on top me and the pain is crushing… It’s debilitating and it’s really hard for me to just get out of bed.”
“It can be very isolating as well when friends don’t understand what you’re going through and they tend to stop hanging out with you because you’re cancelling all the time.”
Sufferers of fibromyalgia gathered at a conference in Dublin today calling on the Government to officially recognise it as a long-term illness.
Ursula Hakman, spokesperson for Fibro Ireland, said more needs to be done to help people with the condition.
“You need a multi pronged approach, you have to subsidise it and you have to finance it. If fibromyalgia would be on the long-term illness list it would be recognised and you would get financial assistance.”
Not much is known about the causes of fibromyalgia, and Dr Shelagh Wright, a Chartered Psychologist, says it is difficult to treat.
“It’s one of those conditions which does lend itself to self-management but that is complex, so the patient education component is really important.
“Patients are helped by some understanding of brain neuroscience.”
Singer Damien Dempsey and his mum Adrienne Dempsey, who suffers with the condition, attended today’s conference.
She said: “I’m in chronic pain and it’s not a nice future to have to look to. I thought this was a time for me to enjoy my life but I’m not enjoying my life at all because I’m in pain 24/7.”
There is no official data on how many people suffer with fibromyalgia in Ireland, but campaigners say tens of thousands have the condition.
They say they will continue their fight to have it recognised as a long-term illness.
Meanwhile, Merissa Appel says she won’t let the condition stop her from living her life.
“It’s not going to stop me getting my dream which is having a career in fashion.
“I’m going to continue working to represent people that have fibromyalgia, especially young people, because there is very little recognition in terms of younger people, so that is what I’m hoping to do.”