My Blue Days with F.
I firstly showed the symptoms of fibromyalgia and MCS while I was still living in a dramatically polluted Beijing. The umpteenth time I was told I was hypochondriac, I started compiling a visual journal of my experience with seldom recognized debilitating diseases. It was self-therapy at first, then it became a journey through the issues connected to disability, seen from the inside and the outside. How to accept ourselves again, if this kind of society constantly makes us feel weak and wrong? Possibly this is one of the main questions I am trying to answer to, since almost three years.
We daily hear about pollution and, increasingly, about environmental disasters. We know that we are destroying our planet, as we are keenly aware there exist hundreds of new diseases, many of which attributable to the reactions of our bodies to substances and technologies not fully compatible with it. Yet, this constant flow of informations hardly causes us to change our course.
In 2012 I started to show the symptoms of what later on was diagnosed as fibromyalgia associated to MCS. I was living in Beijing then, in a people's republic in which the only hint to the widespread pollution of cities and countrysides was still perceived as "anti-governmental". In that context, the diagnosis rates of autoimmune diseases influenced by polluted environments, was almost null. For minor syndromes like mine the diagnosis was always the same: hypochondria or women's depression. But I had never been depressed, so I did not accept those judgments - rightly: the definitive diagnosis of MCS and Fibromyalgia came on June 2014, at the hospital of Verona.
Not that my syndrome was ever taken into any particular account in Italy. Here too, I can still meet doctors assuming that fibromyalgia does not exist. But today, to those who try to tell me what I am, peering at me like I was some kind of freak, I warmly smile, then I proceed on my way.
Fibromyalgia is a complex autoimmune syndrome recognised by WHO since three decades. Officially, it affects less than 10% of world's population, causing them the chronic inflammation of all muscles and nerves. However, since its diagnosis is still quite difficult and controversial and usually does not take less than five years, these figures are not veridical. Fibromyalgia can be highly debilitating but, as it is an invisible disease, all its symptoms are hardly recognizable from the outside. Like any other disability, fibromyalgia brings loneliness. But breaking thorough the isolating bubble surrounding it can open the way to a life still worth living.
I started doing it my own way, through photography, to give voice to mine and similar stories.
When my health worsened, I was still studying multimedia journalism. Growingly keen to experiment the potential outreach of mobile photography, while I still had no diagnosis for any disease, I began to randomly document my experience with a mobile phone and post it on line. I was frustrated and took my notes in pictures, combining them with a journal. My conflicts with doctors, my inadequacy to our healthy society, intoxications, allergies, medications, thoughts - I gradually strived to share everything. This is how I met people living thousands miles away, yet experiencing the same daily paradoxes as mine. These meetings led us feel less strange and isolated and gave me back the will to fight. Then the legs, the arms and the whole body slowly began to follow that light.
Photography can evoke emotions too complex to be expressed by words. A single image can recall ineffable perceptions. But this potential to grasp the ephemeral can also survive through the time. That rip in time which once became a photograph can always stay memory, archive, evidence, denounce.
This is why the narration of my daily distresses with autoimmune diseases is not self indulgence. In fact, it is meant to restore a vital dignity to the mere concept of disability, constantly associated with illness, humanizing it. Because, when we are all naked and vulnerable, the sick becomes just a another man and the limited suddenly earns new unexpected abilities to explore. Being naked in front of such a basic mean, as a mobile phone, lets me portray my illness for what it really is: daily living, daily weakness, daily strength, just daily routine.
Despite of previous WHO and EU directives, fibromyalgia is still not organically recognised as a debilitating disease in every region of Italy and generally denied assistance.
These pictures and the accompanying journals are aimed to become a book by the next year. At the mean time I am creating a group of fibromyalgia affected persons in my hometown (Naples, Italy) willful to cooperate with me and a psycho-photographer to narrate their own experiences with fibromyalgia, so as to build a collective multi media documentary about our illness and create a larger community of people who daily deals with the same problems.