I first started showing symptoms of fibromyalgia and MCS while I was still living in the dramatically polluted city of Beijing. The umpteenth time I was told I was hypochondriac, I started compiling a visual and written journal of my experience with these seldom-recognized debilitating diseases. It was self-therapy at first, but over time, it became a journey through the issues connected to disability, seen from the inside and the outside. I wanted to question: how can we accept our illness if it is still not equally recognised everywhere? How can we accept ourselves again, if the society we live in constantly makes us feel weak and wrong? These are just some of the main subjects I have been trying to answer to, for more than four years…
Daily, we hear about pollution and, increasingly, about environmental disasters. We know that we are destroying our planet, yet, this constant flow of information hardly causes us to change our course.
In 2012, I started to show the symptoms of what was eventually diagnosed as fibromyalgia associated to MCS, multiple chemical sensitivity. I was living in Beijing then, in a country where acknowledging the rampant pollution was considered “anti-governmental”. In China, the disease was dismissed outright. But back in Italy, my syndrome was never taken too seriously either. Even here, I still meet doctors who assume that fibromyalgia does not exist. In fact, in many Regions of Italy, fibromyalgia is not considered as a debilitating illness worth any kind of special assistance.
But fibromyalgia does exist. It is a complex central system disorder recognized as rheumatic disease by WHO twenty-five years ago. Officially, it affects 3% of the world’s population, causing them the chronic inflammation of all muscles and nerves. Still, the diagnosis remains difficult — though fibromyalgia can be highly debilitating, it is an invisible disease and thus all its symptoms are hardly recognizable from the outside. With MCS the global situation is even worst. Too many are the economical interests connected with the air, water and food pollution that generates it.
Nonetheless, fibromyalgia and MCS can be extremely debilitating - physically, psychologically and socially - despite of their invisibility. Like any other disability they bring loneliness. But breaking thorough the isolating bubble surrounding them can open the way to a life still worth living. I started doing it my own way: through photography, to give voice to my own and similar stories.
Firstly, I experimented with the potential reach of mobile photography and social media. At this stage, I had no confirmed diagnosis for any disease, but I began to randomly document my experience with a mobile phone and post the results online. I was frustrated and took my notes in pictures — associated to long journals about conflicts with doctors, the inadequacy one feels compared to our healthy society, etc. This is how I met people living thousands miles away, yet randomly experiencing the same daily paradox as mine. These meetings led us both to feel less estranged and isolated and gave me the will to fight.
Later on, the project has continued to be developed online (Instagram) to inform about the daily living with illnesses that “do not exist”.
On 2016 my personal story became an exhibition, that made me meet a number of fellow citizens with the same problems. At that point, sharing my story clearly was not enough. So now my single voice is intended to be associated with the others' personal stories along the next year, in order to help them not to feel alone and describe multiple experiences and perceptions of the same disease, in subjects different for age, gender, social status, etc.
We are different, but we are all the same. Because we daily face the same disease, we live in the same area and, here, we all see our right to health denied on a daily base. Our main goal is to turn what usually stays unseen and unheard in our society into a collective multimedia web documentary built from below - in order to finally make us all as visible as loud.