«My thoughts go to the invisible sick people, to those who seem healthy but aren’t, like me. It took four years to properly diagnose my condition, fibromyalgia. The State, for treatments, does not recognize any exemption and the costs are all borne by the patients. Another two million suffer from the same disease, still others from pathologies that exist but are not “seen”. For the institutions we do not exist, things must change ». Maria Pozzuto, a 30-year-old from Castelnuovo della Daunia (Foggia), has been living with a disease for almost 12 years that causes her severe pain and requires very expensive therapies. A little known pathology, fibromyalgia, which however afflicts about two million Italians. And it’s a sneaky disease, because it causes rheumatic pain and tiredness that no laboratory test is able to pinpoint precisely. A condition that makes one invisible, a pain that even specialists tend to minimize (“for years I was told it was stress, that is, the diagnosis made by those who do not intend to make one”) and which leaves deep scars that no one, from the outside , can see.
Studies and graduation
After so many years and an illness that prompted her to obtain a “hard-earned” degree in Medicine at the University of Bari (thesis in internal medicine, not surprisingly in rheumatology) complete with a dedication “to the invisible sick”, Maria has finally decided to come forward. Not so much to talk about the disease itself, but about the treatment reserved for those who, like her, suffer from non-Lea pathologies, that is, which do not fall within the essential levels of assistance: “The very fact that it is not possible to obtain a diagnosis from tests in the laboratory, but only proceeding by exclusion and with visits of a certain type, the State does not offer any exemption. It’s not even considered a disabling disease, although it certainly is, and for this reason no research is done and pharmaceutical companies invest little». When she, after four years of suffering, finally got a diagnosis of fibromyalgia, she started one expensive therapy made up of antidepressants, supplements and other medicines, which he had to stop after a year and a half. The benefits were small, the costs very high. «Now, basically, when I feel pain I can only wait for it to pass. And that’s not normal.”
For the doctors it was just “stress”
A difficult condition, a tortuous path through dark moments. «It all started when I was 19 – he says – I started to feel severe pain in my muscles and a tiredness that I had never felt before, both physically and mentally. The general practitioner reduced everything to “stress”, plausible because I was studying a lot at the time”. The situation then got worse: «Much more worrying symptoms have arrived, such as tingling in the hands and loss of balance: for days I was hospitalized in San Giovanni Rotondo with the fear that it was multiple sclerosis, which was later fortunately ruled out. They discharged me with a diagnosis of neuromuscular hyperexcitability and prescribed me magnesium, which didn’t help.”
Shooting pains
The answer came only in 2016, after unsuccessful specialist visits also made in Rome and Milan: «The pains became excruciating, I could no longer get out of bed. So I underwent a new hospitalization at the Bari Polyclinic and there, after various visits, my malaise finally had a name. It was a liberation, also because before I had found doctors who were not very empathetic and minimized my pain. A madness, which has thrown into despair not only me, but also my parents ».
The appeal
May 12 is World Fibromyalgia Day, and Maria asks for a change: “We are treated as second-class patients. The state must recognize this disease as disabling, because millions of people suffer from it and many cannot afford treatment”.