There are many cases where one physical illnesscharacterized by the painit also becomes a threat to the psychological well-being. But at least, in the vast majority of conditions, there is knowledge and understanding by others of the pathological picture. For the fibromyalgiawhich causes pains spread throughout the bodyin particular a back e cervicalfatigue, insomnia, depression and anxiety, it becomes difficult to make others understand their suffering and the malaise that one experiences.
Thus, the emotional state tends to worsen over time. The situation must be changed, also considering that it is mainly women of working age who suffer from fibromyalgia, around 40 years old. We have to convince ourselves that it is not an imaginary disease, as many still think. To raise the attention on these issues is a quantitative research fromPiepoli Institutein collaboration with Aisf (Italian Association of Fibromyalgia Syndrome) Odv and the non-conditioning contribution of Alfasigma.
You don’t get used to being sick
The analysis examined over 1100 interviews to test the degree of awareness, learn more about needs and improve patient care pathways. the picture that emerges appears truly worrying. One in two patients with fibromyalgia thinks they have one poor state of health, confirming the fact that it is a disease of great impact on the life of those affected. Only 14% declare themselves in good health and just 38% are passable.
As further evidence, the study reveals that many (about half) feel it even limited in climbing a flight of stairs, and nearly all have restricted working together with other daily activities. The pain and the emotional state connected to the disease determine, in fact, limitations in work in two cases out of three and in social activities in 56% of cases. The sad emotional state does not significantly flex over the years, as if to say that one does not “get used” to the disease. Compounding the picture is the fact that eight out of ten respondents report that they do not feel understood by others.
“We can define it as an invisible disease, it does not have a biomarker, an evident clinical damage, it does not have a cure – explains Giusy Fabio, Aisf vice president. Patients are considered imaginary patients, hypochondriacs, visionaries and their pain, their suffering is invented in the eyes of others. Also because, although more and more frequently it also involves men – it is often women who are apparently healthy and generally good-looking. Today again, some doctors argue that fibromyalgia doesn’t exist, which is not a pathology, but only a “fashion”. Misunderstanding, not listening, not being understood, whips those affected, creating a sense of loneliness that slowly leads the patient to isolate himself. Here the relationships are tilted, the patient gives up and becomes totally succubus of the disease “.
Diagnosis comes late
The lack of knowledge also affects the timing of the actual recognition of the painting. Moreover, those who suffer from it, also because they are not very sensitized, usually wait a long time, even five years before obtaining a diagnosis. THE symptomsin addition to painare often related to tiredness and in 90% of cases other pathologies are present. The main point of reference is the rheumatologist (58% of the interviewees), but the general practitioner is also listened to, with a not very high level of satisfaction (41%). Those that instead seem to be lacking are above all empathy and closeness: just think that caregivers, that is the people who follow those who suffer, are present only in two cases out of ten. The psyche, of course, is affected.