“I'll explain what fibromyalgia is and why I fight for the rights of those who suffer from it”

“The difference between you and me is that you, in the morning, with some exceptions, wake up rested. I, no matter how much I sleep, always feel as if a truck had run over me.” This is how Pietrina Oggianu, 53, Sardinian, single mother, author and woman with fibromyalgia, tries to make me understand what it means for her to live with this pathology every day, year after year.

“I was diagnosed with the disease in 2016. For months I had been experiencing excruciating pain in my left shoulder, which was spreading throughout my body. I was lucky, because it doesn’t happen to many: I found a capable rheumatologist who, at the first visit, wrote the diagnosis as fibromyalgia, chronic widespread pain syndrome . It was the first time I had heard this name,” says Pietrina.

Doctors don't like it, because it's one of those pathologies with a complex and still little understood clinical picture: "They call it the disease of 100 symptoms, and there are no specific tests: it is diagnosed by exclusion. If you find a good specialist, he listens to you, checks the 'tender points' and evaluates the presence of other associated symptoms".

It is a disease that forces you to develop an intimate, very close relationship with pain: stiffness in muscles and tendons, fatigue, but also mental fog – the so-called fibrofog – and severe depression. During the interview she “reprimands” me because she would have preferred that I had sent her the questions first: “Someone in my condition can easily get confused, forget things. I don’t want to say stupid things about such an important topic”. We take breaks and I try to put her at ease as much as possible, yet Pietrina seems anything but confused: she is very lucid as she tells how she managed to transform the disease into a mission. She wrote a novel, Avrei voluto urlare (I Would Have Screamed), (Edizioni Del Faro) as a political and survival gesture, and with her association, Algea, she carries out awareness campaigns. Together with other associations she is also fighting an important legal battle for the recognition of the rights of people with fibromyalgia.

“Fibromyalgia has been recognized by the World Health Organization since 1992. In Italy, it is estimated that at least two million people suffer from it, mostly women,” Pietrina explains to me. Yet the stages to achieve real recognition have been numerous and diluted over time.

Meanwhile, most patients continued to suffer from ruthless medical gaslighting: “We are not believed. Not only by doctors, but by society as a whole. It is difficult to work, to be an active individual. You need assistance, medical care, support. Instead, we are told that we have nothing, that we don’t want to work, that we are whiny or crazy.” Legal recognition has been slow precisely because of this widespread prejudice, fueled by ignorance.

“In 2005, AISF was formed, the first association of fibromyalgia patients. They had to start from scratch, explaining to the public that it was not a generic malaise, but a totally disabling pathology. It took years of activism, campaigns, even hunger strikes, and the support of some attentive institutional actors, to arrive in 2021 at the inclusion of fibromyalgia among the topics of interest of the LEA Commission, or the essential levels of healthcare.” Only in 2025 did a double decree finally arrive to update the LEA – which had been at a standstill since 2017 and is still in draft form – which recognized fibromyalgia as a chronic disease, inserting an identification code, 068. “It’s just a number, but do you know what it means for me? That I can finally have all the care I need for free: not just drugs, but also rehabilitation therapies, group motor re-education, psychological support, and visits with various specialists, from rheumatologist to gastroenterologist. For fibromyalgia, a multidisciplinary therapy is essential, which has a cost that I, unable to work, cannot afford”.

Right now, the DPCM will be examined by the Ministry of Economy, which will verify its financial sustainability; it will then be approved by the State-Regions Conference and finally signed by the Prime Minister. “It is certainly a step forward, because from now on no doctor or nurse will be able to tell me that it is only in my head,” explains Pietrina. But she adds: “This law has not satisfied the associations for two reasons. First of all, it provides exemption only for serious cases, that is, only for 17% of total patients. I am this lucky – which I would not wish on anyone – because I have a diagnosis from the center of excellence at Niguarda in Milan, which certifies my serious form.

But those who are not among the 'A-list' patients will not have access to professionals and quality care, if they cannot afford it.” Added to this is the fact that, among the thirteen bills presented, the only one that was not taken into consideration was the one drawn up by an association of fibromyalgia patients who therefore know the problem well: “the disappointment for this lack of listening was strong,” says Pietrina. Fibromyalgia was included in a bill that includes other completely different diseases and only provides a very bare regulatory framework. This says a lot about the basic disinterest in a pathology that, instead, would require a single and specific text, with guidelines valid throughout the national territory. This creates a patchy scenario, in which some regions – such as Tuscany, Valle d'Aosta and Sardinia – guarantee more incisive protection, economic support and dedicated regional programs: “Patients resident in Sardinia 800 euros per year, only once, with no guarantee of renewal. It’s not much, but it’s a start. It’s a result due to the efforts of regional councilor Fausto Piga, who faced strong hostility and even derision for his requests for recognition.” “Some brave politicians are fighting for us: among them Ilenia Zambito, Silvio Magliano, Paola Boldrini, all people I’ve met and encountered in my presentations. They are often alone, while there should be a national effort. And we’re not asking for the moon: we’re asking for smart working, specific training for medical and healthcare personnel, investment in research.” It seems clear that this restriction is dictated by the political will to contain expenses. “There’s money for weapons, but perhaps health is less of an issue,” Pietrina tells me through gritted teeth. We don’t really know the social consequences of this disease yet, also because of its silent nature. But they could be more serious than we imagine. It’s a pathology that reveals a fragile social fabric: “I got sick following domestic violence, which left me with a trauma. My difficult childhood had already created fertile ground for the disease. Like me, many women are simply left alone. Four years ago a woman committed suicide because she was not recognized for anything: neither a subsidy nor any treatment. She was 33 years old, had no money and had a daughter, like me. No newspaper talked about it. The last thing she wrote was: I'm leaving you, I hope my gesture can mean something .” It is a disease that says “ouch” from morning to night, and needs to be listened to and empathized with, just like vulvodynia and endometriosis. “And yet, even today, at the checkout, I still ask to move forward because maybe I can't stand up, and I hear contemptuous comments: 'Oh sure, you're an invalid, and what should I say?'” This is why Pietrina travels around Italy telling her story, to spread a culture of understanding pain. “I don't want to live in the shadows, hiding. I just want to find a place in society, to be believed, listened to and cared for. We all want that.” Not all have Pietrina's strength and survival instinct, but all have had to develop resources they didn't know they had. The other name for fibromyalgia is Atlas syndrome , the titan condemned to hold up the world. I end the interview thinking that perhaps, now, it's up to us - as a society - to take this world of pain off the shoulders of people who suffer from fibromyalgia.