Individuals living with fibromyalgia are spending their energy fighting the Irish health system as opposed to alleviating their condition, according to co-founder of Fibro Ireland.
The comments come in light of a conference held in Dublin last week whereby people living with fibromyalgia gathered to call on the government to recognise the condition as a long-term illness.
The condition is characterised by widespread pain and fatigue which is often a challenge to accurately diagnose.
Rachel Lynch is a co-founder and group facilitator of Fibro Ireland, an Irish support group to support those affected by fibromyalgia. Speaking to The College View, Lynch, who also lives with the condition said:
“Fibromyalgia not on the Long Term Illness List. It is also a very expensive illness to manage. If we were on the list, it would help to reduce the financial burden.
“A lot of the symptoms are similar to MS. We have had people who have had to do five or six rounds of social welfare, they have medical files as long as their arm and yet they are still being refused social welfare.”
She highlighted that the Long Term Illness List has not been updated in 40 years: “there’s no plans to change it, people with Chron’s disease and arthritis have tried to get on the list, and they are being told no. No one will tell us what the criteria is.”
Georgina Moloney was diagnosed with fibromyalgia in October 2015 at the age of 38, after being misdiagnosed for nearly 10 years.
Moloney, who is currently studying Office Management at the Kerry College of Further Education said her symptoms include chronic pain, migraines, alopecia, irregular body body temperature and sleep patterns and exhaustion.
She explained how no two days are the same, “I could wake up with an almighty migraine, or I could feel absolutely exhausted either from constant pain during the night or its just a ‘tired feeling’ day.”
Moloney outlined the barriers to employment when she finishes her course, “The Department of Social and Family Affairs will be on my back to find work. How am I supposed to tell my employer ‘sorry but if I get a bad day, I can’t come in.’ No one is going to put up with that.
“Getting Disability Allowance could make things so much easier. I could have the time to actually have a life on my own terms,” she said.
Image Credit: EHealthDigest