Fibromyalgia has been defined as “a disorder characterised by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues”. It is in fact believed that fibromyalgia amplifies painful sensations – this means that it affects the way the brain processes pain signals.
Approximately one in every 73 persons in the US suffers from fibromyalgia. In Australia it is estimated that fibromyalgia affects two per cent of the population. It has proved difficult to acquire statistics on the number of fibromyalgia sufferers in Malta.
The major problem encountered by sufferers is that the disorder is not easily diagnosed. Most of the time sufferers have to endure months of pain if not years, a series of tests and often efforts by the doctor to convince them that it is all in their heads.
Fibromyalgia patients differ from other widespread-pain patients. Sufferers are more likely to find it difficult to understand the cause of their pain and, even worse, explain their pain to others.
Statistics from all over the world demonstrate that it is mostly females who suffer from this condition. Fibromyalgia appears to be known in a majority of countries and research has been carried out to understand it better. However the situation is very different when discussing awareness of fibromyalgia in the Maltese islands.
Talking to Maltese citizens who suffer from the symptoms of fibromyalgia, one can identify a common factor – the lack of awareness and support from the local health system on this condition. Some talk about the lack of support in the general environment while others highlight the lack of sensitivity shown by family members, friends and colleagues due to ignorance of the subject.
One way of dealing with the symptoms of fibromyalgia is through medication, some of which costs more than €100. Only one type of antidepressant is provided free by the health care system, and the other medicine provided free is for pain relief. Usually this medication has side effects, which leads to the need for yet more medication and further expense.
If it is not considered as a real illness, does this mean that the pain in the individual’s mind is not real?
Lately some individuals have been experimenting with alternative therapies; however, once again, these are rarely offered free by the health care system.
Another major issue is the effect this condition has on the individual. Some sufferers claim that they find it difficult to cope with life, having problems dealing with family needs and difficulty holding down a full-time job.
Lack of awareness about this condition might lead to insensitivity from employers and colleagues.
Fibromyalgia is not considered as a disability in Malta and, therefore, sufferers cannot apply for a disability pension even if they find it difficult to cope with work responsibilities.
In her book The fibromyalgia story, Kristin K. Barker tries to close the gap between the lack of recognition of fibromyalgia as a real illness and the real pain which is experienced by the women who took part in her study.
The failure to label fibromyalgia as a real illness or a disability has implications for sufferers.
If it is not considered as a real illness, does this mean that the pain in the individual’s mind is not real? Not considering it as a disability might make it acceptable for society not to put in place structures to support the growing number of individuals who have to deal with the pain on a daily basis.
Some refer to fibromyalgia as “an invisible illness”. The symptoms are invisible and vary from one individual to the next. The fact that the cause is not yet understood may give the impression that the symptoms of pain are very subjective.
There is also the concern that doctors label patients as suffering from fibromyalgia when they do not have an alternative diagnosis. This makes it all the more difficult to establish fibromyalgia as a real illness or a true disability.
Life for sufferers of fibromyalgia is not an easy one. These persons require a lot of support and guidance. The ME, CFS & Fibromyalgia Alliance Malta is a Maltese NGO that works to improve the life of sufferers of fibromyalgia and ME (myalgic encephalomyelitis).
Anyone who would like to contact the alliance for support or further information can do so on me.cfs.fmalliance@gmail.com.
Mariella Stivala works at Saint Martin’s Institute of Higher Education.