By Aisling Kenny
Activists called on the government to recognize fibromyalgia as a long-term disability.
It is estimated that tens of thousands of people in Ireland suffer from this condition, which is characterized by widespread pain and fatigue that can be difficult to diagnose.
Merissa Appel, a 25-year-old student, lives with fibromyalgia. She says that she suffers constantly and that daily activities are a challenge.
She said, “It’s a feeling up and down, one day everything would be fine and the pain would be minimal. Other days, I might feel that a ten-story brick building had fallen on me and the pain was overwhelming … It’s debilitating and it’s really hard for me to get out of bed. “
“It can also be very insulating when friends do not understand what you’re going through and tend to stop hanging out with you because you’re canceling all the time.”
People with fibromyalgia met today in Dublin to ask the government to officially recognize it as a long-term illness.
Ursula Hakman, a spokeswoman for Fibro Ireland, said more needs to be done to help people with the disease.
“You need a multi-pronged approach, you have to subsidize it and you have to fund it. If fibromyalgia is on the list of long-term illnesses, it will be recognized and you will get financial help. “
Little is known about the causes of fibromyalgia, and Dr. Shelagh Wright, a registered psychologist, says it is difficult to treat.
“This is one of those conditions that lends itself well to self-management but is complex. The patient education component is therefore very important.
“Patients are helped by some understanding of brain neuroscience.”
The singer Damien Dempsey and her mother Adrienne Dempsey, who suffers from this disease, attended the conference today.
She said: “I suffer from chronic pain and it is not a bright future to watch. I thought it was time to enjoy my life, but I do not enjoy my life at all because I suffer. 24/7. “
There is no official data on the number of people with fibromyalgia in Ireland, but activists say tens of thousands of people have the disease.
They say they will continue their fight to make it recognized as a long-term illness.
Meanwhile, Merissa Appel says she will not let the disease stop her from living her life.
“It will not stop me from realizing my dream of a career in fashion.
“I will continue to work to represent people with fibromyalgia, especially young people, because there is very little recognition of young people, so that’s what I hope to do.”