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© 2021 Sabrina Merolla
Beijing, China. March 2014. My face reflected on the window of a skyscraper, in one of the unnumbered megalopolis of our world. Me and the city - this is how it all began. With an intoxication from polluted water and food, which led to MCS (Multiple Chemical Sensitivity) and fibromyalgia.
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© 2021 Sabrina Merolla
Naples, Italy. Spring 2014. Restless legs syndrome is both, a symptom of fibromyalgia and an independent disease. It causes the urge to move the legs because of uncomfortable sensations as tingling, burning, itching, or painful cramping. These sensations worsen during the usually sleepless nights.
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© 2021 Sabrina Merolla
Naples, Italy. December 2014. There is not really a protocol for treating fibromyalgia. If and when there is a diagnosis, another calvary starts again. From prescription to prescription, from doctor to doctor, trying many medications which sometimes risk to be even more damaging that the illness in itself. Being affected by MCS, too, I personally found relief leaving any strong allopathic solution off. I take care of myself with a detox diet and food supplements. I also do what doctors previously wanted me to abstain from: I move everyday. Otherwise the simplest movement can quickly become unachievable.
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© 2021 Sabrina Merolla
Loreto Crispi Hospital, Naples, Italy. Summer 2013. This is one of the unnumbered hospitals I visited in the last few years. Nonetheless, this was a very important one. Here I heard the word "fibromyalgia" for the first time, from a rheumatologist. It was just a vague hypothesis for some strange sensations I felt. But one year later, when I clearly showed all fibromyalgia's symptoms in Beijing and everybody kept on saying I was "depressed", it turned out to be the most helpful suggestion ever.
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© 2021 Sabrina Merolla
Beijing, China. February 2013. Before of clearly showing all fibromyalgia's symptoms, it is quite common to have many different kinds of "crisis". As for me, on Winter 2012, I started to feel unbearable pain in my back and neck. Then it was the turn for kidneys, unfamiliar allergies and so on. At first, I found relief in Chinese traditional medicine. In this picture the effects of moxibustion on my skin are quite visible. Despite their aesthetic impact, Chinese medicine treatments as massage, acupuncture and herbal detox, are never invasive and highly recommended to help soothing the body during the fibro flares.
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© 2021 Sabrina Merolla
Beijing, China. March 2014. "Fibro fog" really feels like having the brain in the haze. Generally, it is characterized by neurological overstimulation, forgetfulness, decreased alertness, confusion, inability to focus or stay focused. Basically it feels like the brain is there but, instead of going from point A to point B, it just flows round and round.
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© 2021 Sabrina Merolla
Naples, Italy. January 2016. Unnumbered are the injections I had during the last few years. Analgesics, anti-inflammatories, cortisone - I tried everything. But having my syndrome been caused by a deep intoxication, which made the neurologic system tilt out, all those drugs could give me only some immediate relief that, later on, I always paid for. Because they contributed to deepen my body's poisoning. Now I only have vitamin B shots, to strengthen the nerves consumed by chronic inflammation.
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© 2021 Sabrina Merolla
Naples, Italy, Summer 2014. It has been demonstrated there is no hereditariness in fibromyalgia. Nonetheless, in a number of cases, there seems to be a certain 'familiarity' with parental light infirmities. I have longly been staring at the lifeline in my palm, wandering about destiny, hereditariness, fate. But I have found no answer apart from something I was told once, while I was trying to explain the causes of my illness to an Instagram friend. He just interrupted my explanations and said: "It is as it is, Sabrina, and it is perfectly fine this way".
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© 2021 Sabrina Merolla
Naples, Italy. December 2014. The degree to which these kind of illnesses can stay invisible is astonishing. We may feel the fiercest pain without showing any clear outward sign. And I have to admit that, if doctors are not always young, while many autoimmune diseases have only been recognised by WHO during the last two or three decades, it is understandable why so many of them firstly believe we are all hysterics.
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© 2021 Sabrina Merolla
When a strong flare rises it is never a subtle sensation. It feels more like a punch in the face. Because pain migrates in different parts of the body and quickly becomes overwhelming, breathtaking. The first times I was scared and confused. Now I keep on asking to myself: "How long, this time?" “Will it be the last”?
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© 2021 Sabrina Merolla
Naples, Italy, October 2014. Friends always make a difference. People come and go though; friends come and go, too. I cannot pretend every friend of mine showed empathy for my illness or interest for me as a "normal" person, beyond fibromyalgia. But dealing with someone who is going through a lot of pain is difficult. As I found many new friends, I lost someone on the way. But this road I never choose for myself, by the end, has become part of me, and denying any recognition to it is denying recognition to the person I am today.
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© 2021 Sabrina Merolla
Naples, Italy. Winter 2014. It may sound ludicrous, but the evening bath is an essential part of my life. It easily relaxes all muscles and nerves and, from the unbearable task it used to be at first, it has now become my daily little ritual.
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© 2021 Sabrina Merolla
Italy, May 2014. As I fly back to Italy, a beautiful sky and many hopes permeate everything.
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© 2021 Sabrina Merolla
Naples, August 2013. Fibromyalgia changes us and nothing will ever stay the same. It is hard to accept it. It is confusing to see exactly the same person in the mirror, then discovering her body and mind cannot follow her will anymore. Everything is tiring and painful and the more we try to push ourselves the more we cannot move. The more we do not want to admit how we have changed, the more we deny ourselves thousands of other possibilities.
I was under psycotherapy for years, only to learn how to accept the new me, how to get to know her again, without forcing her to do what she was not able to do anymore. What did I learn through therapy? Just to listen to my body, which was the only real thing that I could do to get to really now the new me.
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© 2021 Sabrina Merolla
Villa Floria Clinic, Caserta, Italy. May 2013. Me and my mother at a laser therapy session. Life is a movie reflected on glass. But I am still lucky, I can walk and swim again, now.
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© 2021 Sabrina Merolla
I have been a sinologist for years, before of becoming a full-time photographer. After eight years in China, which was becoming one of my two motherlands, moving definitively back to Italy was an extremely hard decision to take.
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© 2021 Sabrina Merolla
Naples, Italy. The year 1982, as seen on September 2015. On May 7, 2014, I was back to Italy. I urged to talk my own language with doctors, as I needed my family and friends. Autoimmune diseases are deeply challenging for families. It is complicated to show empathy to somebody who does not look sick and does not want to admit her/his disability. It is difficult to accept it for relatives, too, without hoping, someway, that there is just a psychological problem. Families are often left apart in the narration of this kind of stories. But the truth is that they are always there, for the good as for the bad.
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© 2021 Sabrina Merolla
Ischia Island, Italy. July 2014.
The dark night gave me black eyes,
Yet, I use them to search for the light.
Gu Cheng
黑夜给了我黑色的眼睛
我却用它寻找光明。
顾城
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© 2021 Sabrina Merolla
Naples, Italy. May 2014. My innest wish at the time: not to have a chronic illness and to get better soon.
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© 2021 Sabrina Merolla
Naples, Italy. September 2014. Chronic fatigue is carachterized by persistent soreness and exhaustion. Muscles and bones feel extremely heavy and difficult to move. Every movement, even breathing, can become unbearably hard.
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© 2021 Sabrina Merolla
Ischia Island, Italy. July 2014. The way I feel... An old picture from one of my trips to Ischia Island. I go there for thermal therapy. The first days I am almost dead, as the gecko in the photograph, then the healing process begins.
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© 2021 Sabrina Merolla
Naples, Italy. February 2015. Daily looking for some relief from my legs thrills and aches, daily routine when fibromyalgia flares up.
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© 2021 Sabrina Merolla
Caserta, Italy. December 2013. Ups and downs can be unbearable. Fibromyalgia can be unpredictable and distressing. It feels so terribly meaningless to restart living again, then stop it again, then start it up again... Sometimes it just feels like looking at life through a fishbowl. I am inside, moving over and over in the water, where every sound, smell, or sensation is mitigated. But I know the real life is on the other side of the glass.
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© 2021 Sabrina Merolla
Naples, Italy. October 2014.I must go down to the seas again, for the call of the running tide
Is a wild call and a clear call that may not be denied;
And all I ask is a windy day with the white clouds flying,
And the flung spray and the blown spume, and the sea-gulls crying. (...)
From John Masefield's
"Sea Fever"
Public Story
My Blue Days with F.
Credits:
sabrina merolla
Updated: 04/06/17
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.