We're not lazy and it's not 'all in our minds'
Friday 16 May 2014
We’re not lazy and it’s not ‘all in our minds’
ME and FM sufferers aim to raise awareness of chronic illness
Last month alone, Rebecca Camilleri received three suicide calls from people suffering from the debilitating illness of fibromyalgia, who were hovering precariously on the brink of despair.
Unable to work due to the throbbing pain but not qualifying for benefits, living in a society which still fails to understand the chronic disease, suicidal thoughts are escalating among ME and FM sufferers in Malta, according to the ME, CFS and Fibromyalgia Alliance Malta.
Joined by fellow members Ruth Debono and Maria Gauci to mark International ME and FM Awareness Day, Ms Camilleri told Times of Malta that, even after the government recognised the illness as a chronic disease, sufferers were still finding multiple closed doors.
Chronic fatigue syndrome (CFS) is a debilitating and complex disorder characterised by profound fatigue that is not improved by bed rest and that may be worsened by physical or mental activity.
ME – myalgic encephalomyelitis – manifests as muscle pain and intense physical or mental exhaustion. Its cause is still unknown and there is no known cure.
People with fibromyalgia (FM) experience pain in their tendons and ligaments, along with tender points throughout their body which ache when pressure is put on them. Fatigue is also present.
“There is not much awareness of the disease in Malta, even among the medical profession,” Ms Debono, who has FM, says.
“We’re still routinely told by some doctors that we’re lazy and that our illness is ‘all in our minds’. We know of people whose own families don’t think that there’s anything really wrong with them.
“So imagine that you feel profoundly tired and in pain but everyone around you tells you that there’s nothing wrong with you – it’s enough to drive anyone crazy and to an early grave.”
Ms Gauci, who works as a nurse and suffers from FM, explains that she recently had to take 15 days of sick leave due to an FM flare-up.
“The pain is encroaching. It starts from the tip of your toes and surges throughout your entire body. Any form of light, sound and movement is painful. The body can’t handle any type of stimulation.”
Ms Debono adds that she has even forgotten her son’s name during an FM flare-up.
“It’s like running a high fever but you’re still expected to work and do other things normally.”
The NGO is lobbying for the condition to be included as part of the syllabus studied by aspiring doctors at the University of Malta.
They are also calling for a one-stop-shop which would treat people with ME, CFS and FM, rather than being bounced back and forth between rheumatologists, neurologists and nutritionists.
The clinic would incorporate specific tests as well as professional advice from foreign doctors specialising in the field.
Last year, the NGO welcomed the government’s initiative of setting up a working party comprising sufferers and professionals, such as rheumatologists, neurologists and psychiatrists, with the aim of developing a patient-centred service. In the next few weeks, a final report will be drawn up which will present the government with proposals for having better treatment, better facilities and an overall view of the sufferers’ needs.
Ms Camilleri explains how former Social Solidarity Minister Marie-Louise Coleiro Preca was shocked to hear how many sufferers lived on the brink of poverty.
The 30-year-old, who developed FM, lives with her 67-year-old mother who suffers from osteoarthritis.
The debilitating illness forced her to quit her regular nine-to-five job and, as she is not considered disabled, she does not qualify for benefits.
“Getting out of bed was impossible. I would drive to work with a paper bag on my lap and spend the entire morning vomiting.”
There are days in which she is better than others, but flare-ups are highly unpredictable.
“I phoned the ETC to ask them whether there was some sort of job I could do from home, like telework or flexitime.
“They asked me to attend eight-hour training sessions. If I could work eight hours, I could go to work.
“It’s a vicious cycle. We need help or we fear that suicides could escalate.”
The NGO can be contacted at firstname.lastname@example.org.
The above, plus a video, originally appeared here.
Please note: This article contains references to death. If you have feelings of helplessness, or of suicidal thoughts, seek help immediately. Lifeline is an excellent starting point: Lifeline – Suicide Prevention resources and links.
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