In the framework of the International Day of Fibromyalgia, which was commemorated last week, the president of the Fibromyalgia Association, Luisa Fernanda Panadero Gómez, writes an article in the “Signatures” section of the EFE Agency, which we collect in EFEsalud, where analyze the situation of this disease
by Luisa Fernanda Panadero Gómez, president of the Fibromyalgia Association AFIBROM
Fibromyalgia is not seen, it suffers. Fibromyalgia is invisible, but the almost three million people who suffer it in Spain are not.
Although institutions continue to look the other way, fibromyalgia is a reality that continues to grow, which does not understand social classes, cultural level, age, or cardinal point. It can start in childhood and get worse over the years with the appearance of new symptoms.
Far from being psychological, as many have insisted on making us believe, the latest research worldwide suggests that it is a neuroimmune disease and therefore compromises all systems of the body, and may appear up to more than thirty different symptoms. The most invalidating are pain and chronic fatigue .
“Fibromyalgia is a chronic and invalidating disease of unknown cause and without effective treatment.”
For many years this definition has been avoided and it has been preferred to accuse the patient of lying, complaining, neurotic, depressive, conning, victimizing … to such an extent that most of society has believed that fibromyalgia is synonymous with storyteller and in all forums are spoken in a derogatory and suspicious manner of these patients, exposing those affected to a “popular trial” with verdict: “life imprisonment”, sentenced to lock themselves up at home, not to fix themselves, not to smile … because if they do they go back to be judged “It will not be so bad when it’s so fixed”, “look how it laughs, it will not hurt so much” …
In addition to being sick, society questions their right to live and be happy. People with physical difficulties who achieve sporting or personal success are examples to follow and cause for admiration and nobody doubts their disability, this admiration and empathy occurs in all diseases, except with fibromyalgia.
The patient of fibromyalgia who manages to be happy, despite the illness, and manages to succeed, despite the very great difficulties, is not valued for its strength and desire to excel, nor is it an example of life, it is simply a reason to question his diagnosis and, with it, the professionalism of the doctor who gave it to him.
The fact that the reality of this hard disease has been denied for so long has caused irreparable physical and moral harm to many affected people.
At the health level, polypharmacy has been abused and drug addicts have been created and the fact of making their environment and society believe that “they have nothing” has resulted in family breakdowns, mobbing, job dismissals and unfavorable disability sentences. labor . When, for all these collateral damages, the patient is submerged in a depression , the one who remains obstinate in denying the evidence is confirmed in that “his problem is psychological”.
Years ago we could justify this “inappropriate treatment” due to the ignorance of the origin of the pathology, but after thirty years, this does not work anymore. Although we still do not know what the origin is, although there is not yet a measurable marker, it is time to take responsibility and start looking for it.
Because fibromyalgia has gone from being a health problem to being a social problem. It affects 5.4% of the population, 92.7% are women at risk of social exclusion.
“Fibromyalgia is a chronic and invalidating disease of unknown cause and without effective treatment.” This is a blunt and easy to understand phrase, it is time to accept it, take responsibility and act accordingly, for example, investing in research and resources for the proper treatment of the disease.
The greatest pain is social incomprehension; the worst “forecast”, the indifference of the administrations
Fibromyalgia is not just pain, as some say, as if that were not much. It affects the whole organism so that the patient wanders from specialty to medical specialty, for years, until finally getting a diagnosis that does not help much because the medication that is prescribed does not make the pain disappear.
The result is an extraordinary expense of the health system and lost time for the patient, which adds to its symptoms the secondary effects of polypharmacy and frustration. Frustration also shared by doctors who want to help the patient but feel powerless due to lack of time in consultations and resources to serve them in a multidisciplinary way as they deserve.
AFIBROM , other associations and more and more doctors, we believe that it is necessary in Spain the creation of, at least, a multidisciplinary unit by autonomous community.
The solution is to have the political will to invest in research and training of expert doctors who direct these units. This form of care would be cheaper for the system and would improve the quality of life of the patient and therefore the family and work environment. Perhaps one of the reasons why it is not investigated is because “fibromyalgia do not die” …
With fibromyalgia you do not live, you survive.
Survive, dying slowly.
Fibromyalgia is a chronic and invalidating disease of unknown cause and without effective treatment. The greatest pain is social incomprehension; the worst “forecast”, the indifference of the administrations.