People from all over the world with chemical sensitivity have understood that their illness is a matter of policy, suppressed by certain lobbyist groups and industries so as to not lose their influence and revenues. For decades, these groups have succeeded in explaining chemically caused diseases as not existing and denouncing the afflicted as mental wackos through specific propaganda. Thanks to the internet, these structures are starting to crumble. The MCS-diseased network internationally, exchange expertise and encourage each other. The possibilities offered by social networks are multiplying this. Years ago barely none of the afflicted knew someone from another country, yet today this networking has turned the world into a “village”.

Never would I have gotten in touch with Eva, a young Spanish Lady who suffers from severe chemical sensitivity, extreme nutrition intolerances and CFS. Even if I had traveled to Barcelona where she lives, I would have never been able to meet her. For the past two years she only can stay in her home, and for several months she just lies in bed all day. In defiance of her severe illness, this remarkable activist manages to make the people of her country aware that our hyper consumption of chemicals in everyday products takes its toll. Together with Susie Collins from the U.S. Canary Report, I asked Eva to report on the last few months. This wish was important to both of us, because from Eva’s report other MCS-afflicted should take heart to become active.

Nobody expects that every sufferer of chemical sensitivity will achieve as much as that which can be read in the following report. It’s even not necessary, because there are many individuals throughout the world who have the same target – the acceptance of a disease which is not allowed to be, but which can’t be kept a secret any longer.

On the other hand, “never say never”, because you possibly may be somebody who still has good ideas and guts, even if you are only able to stay in bed and lack vigor. There sleeps more potential capacity in us as we reckon by ourselves. The intention of the following report is to inspire you:

Eva Caballé:

My friends Silvia Müller and Susie Collins asked me to write about all the Multiple Chemical Sensitivity awareness events I have done since June 2009. This is a summary of all my articles, collaborations and media appearances, which I hope have helped raise MCS awareness.

As many of you know, last June, I wrote an article called “The Naked Truth about MCS” for the on-line cultural magazine Delirio, with two photos of me naked wearing nothing but a mask. The article was translated into nine different languages, thanks to Susie Collins at The Canary Report and Silvia Müller at CSN – Chemical Sensitivity Network. Since then I have contributed to each edition of Delirio with articles focused on MCS: “Screaming from the Silence” and “Metamorphosis inside MCS”, and I am now working on the next one.

Then I decided to write a book to let people know, through my personal life and experience, what it’s like living with MCS: the total abandonment that we suffer and why people should be worried about all the toxic products they use daily. I finished writing Missing: A life broken by Multiple Chemical Sensitivity at the end of August, and in November the book was published by El Viejo Topo. The book was announced when Salvador López Arnal interviewed me to talk about MCS, an interview that was then translated into English, Japanese and German, thanks to my online friends.

Thanks to “The Naked Truth about MCS,” I met a lot of interesting people from all around the world, and one of them in Japan, Takeshi Yasuma, from Citizens Against Chemicals Pollution (CACP), asked me to write a message to MCS patients and their supporters to be presented at the symposium in Celebration of the Recognition of MCS in Japan in October 2009. My message was read and displayed during the symposium.

In November, two weeks before my book was released, I was interviewed by phone at Radio 3 (National Radio in Spain), in a live culture program at prime time called Carne Cruda. For 25 minutes we talked about Multiple Chemical Sensitivity and my book, and they were so shocked that they promised me they would contact the Ministry of Health to explain to them the terrible situation of MCS sufferers. As many of you know, the Secretary General of the Ministry of Health was interviewed on air (my husband David talked to him on my behalf) and made a public commitment to meet MCS associations in Spain to listen to our claims. The meeting was held on February 4, 2010, the outcome of which was a commitment by the government to form a Scientific Committee to create a document of consensus on MCS.

At the end of November, an article about my blog No Fun was published in the youth supplement of the printed newspaper Deia. The article, entitled “Toxic Life,” was an extensive and accurate analysis of my blog (the information I provide, the translations I make, the articles I write, my collaborations, etc.), with focus on MCS and my collaborative work in the international fight for MCS awareness.

I also participated in the fabulous Canary Report 2010 wall calendar, with 14 other women from all around the world. The idea was inspired by my nude photos published at Delirio and I was very proud to be part of such an amazing project led by Susie Collins. The calendars are available for purchase and all profits are donated to the Environmental Working Group.

At the end of 2009, Salvador López Arnal interviewed me again, this time we talked more about my book and my experiences, and he also interviewed my husband David, who wrote the epilogue of my book. This interview was published in the printed magazine El Viejo Topo in January, and in February was released online.

During December 2009 and January 2010, three fabulous reviews of my book were published. The first one was published at Punts de Vista, a blog by Àngels Martínez i Castells, who is an economist and the president of Dempeus, a Catalan association in defence of public health. The second one was published at Kabila, a blog by Rafael G. Almazán, who is a journalist specializing in political and human rights. And the last one was published at the website of the environmental journalist and writer Miguel Jara.

At the end of January, another interview of me was published in the Health supplement of ABC, one of the most important printed newspapers in Spain. The interview, which was a double page and included a photograph of the cover of my book, was focused on MCS and my experiences explained in my book, but also focused on the total abandonment that people with MCS suffer. They included an MCS article written by Dr. Arnold, an immunologist specializing in MCS, which was also published at the website of the newspaper.

“El color de la tarde,” a magazine radio program on Radio Intercontinental, asked to interview me the day after the interview at ABC was published. I wasn’t able to do it because of my health condition, but they agreed to interview David on my behalf. The interview was focused on MCS and my book.

Also at the end of January, an article was published at El Observador magazine entitled “The canary of the mine.” This article, inspired by my book, was about MCS, toxics, my book, and Silent Spring by Rachel Carson. The article was written by an ecologist and it was very combative, encouraging lectors to become aware of the alarm from people with MCS. The article was finished with one paragraph of my book and the last sentence was: “Maybe so many toxic products have managed to turn us into sheep?”

In February, my book was mentioned in a literary radio program at Radio Euskadi and because of this, “La noche despierta,” another program of the same radio, asked to interview me by phone to talk about my book and MCS. My health didn’t allow me to make this interview but they agreed to interview David, my husband, because they were very shocked about my book. The interview with David at Radio Euskadi lasted 30 minutes and it was very deep and sensitive. They talked about MCS, how our government doesn’t do anything to help us and how are we doomed to live without support from social services. The journalist had an exquisite tact and the interview was moving. I answered one question that I previously recorded from bed.

In March, my book was added to the catalogue of two public libraries: Public Library of Navarra and Public library of University of Alicante. I am very excited about this because in both public libraries it’s the first book about MCS that they have.

Also in March, an interview with David was published at “La Contra,” a prestigious section of a very important printed newspaper in Spain: La Vanguardia. They wanted to interview me, but because of my health condition I couldn’t do it. The interview was about MCS and our experience and it was a great success. Because of it, another radio program has asked to interview David.

The same day of the interview at Radio 3, a Spanish filmmaker contacted me because he was shocked with the interview and he decided to make a short film to help to raise MCS awareness. He asked me to help him, because, even though the history would be fiction, he was very interested to make it as real and accurate as they can. The short film about MCS, entitled Los Pájaros de la Mina (The Birds of the Mine), has started to film in March and it’s raising much expectation, talk and press because it will be the first MCS short film in Spanish.

A national TV program called Terra Verda (Green Earth) asked me to participate in their program dedicated to toxics at home. Because of my health condition, they couldn’t come to my house but they agreed to have David record my interview with our video cam. They also asked us to show the changes we have done at home because of my MCS, and we did a second video showing all this information. This program will be aired at the end of March, and then I will post the program at my blog No Fun, along with the full-length version of both videos we recorded at home.

All this has happened in less than a year! I’m very excited about it because I could never imagine I would be able to do all this, especially when my health condition worsened. Of course I couldn’t ever do any of this without the help and support of David and all my family and friends from all around the world.

Author: Eva Caballé, No Fun, March 2010

Title Photo: Canary Report Calender 2010 – thanks to Susie for the permission

During our lives we suffer several metamorphoses, some are painful, others are positive, chosen or not. The experience, the life itself, makes us change and evolve.

My story is not different, although my most radical metamorphosis was when I fell ill with Multiple Chemical Sensitivity. But although I got sick suddenly, the process itself happened slowly. I was preparing for MCS for many years before I was aware of it. My body was warning me repeatedly without my understanding what it wanted to tell me. But how could I know that everything happening to me was the prelude to MCS? It’s almost impossible to know since information about MCS is kept secret from the public and when anyone dares to raise a voice, they are automatically silenced by those who say MCS is all in the minds of the patients.

It’s not easy to understand what happens to you as you search for a diagnosis, all the while trying not to fail during the long journey while you are riddled with attempts to damage your self-esteem as you struggle with a more diminished health status every day. The last stage of this particular metamorphosis happens when you finally know what it is happening: you have MCS. And then you start to reconsider the life you have known before in order to adapt yourself and to survive into the future.

All of us have gone through the stage of crying over things that we have lost, to hate what we have become. Where is that tireless and impulsive person who took the world by storm? It’s a natural, healthy and necessary stage. But oddly, then comes the most difficult thing: to find our place in this new world in which we’re doomed to live.

And surprisingly, when I thought that my life couldn’t be more foreseeable and monotonous, from the prison that my house has become, another metamorphosis started, this time deeper and visceral. This time my metamorphosis was chosen.

The need to communicate, to let the world know that I’m still alive, to cry out for my own rights and the rights of millions of people who suffer MCS in the whole world, led me to write. My timid voice started to be heard on my blog, No Fun, and then gathered strength thanks to Delirio’s articles, which were translated into several languages. And the first of them, “The Naked Truth about MCS,” was read on the Spanish Radio 3 program Carne Cruda. It was then that I finally dared to do something I had never imagined I would ever do: to write a book.

The extremely reserved person that I used to be has disappeared, in order to be able to tell my story to the world, as I dig into the deepest places of my being. Missing: A Life Broken by Multiple Chemical Sensitivity is a fulfilled wish as I report the situation in which we live. It’s my metamorphosis inside the metamorphosis of living with MCS. It’s my testimony, my life, my reflections. It’s also my contribution to the fight we’re doing at an international level to have MCS fully recognized. My book is the clearest proof that MCS didn’t take away my essence or my attitude; MCS didn’t steal my dreams but rather it changed my dreams so that I could help others.

My wish is that a lot of books will be written by people who are “missing” because of MCS so that the public knows we exist. We are ill, but no one will silence us.

Author: Eva Caballé / No Fun Blog, published at Delirio 2010.

Translation: Oscar Varona (from Delirio’s team) and Eva Caballé with help from Susie Collins.

Japanese and German versions are following soon.

Related Articles:

• Interview with Eva Caballé about Multiple Chemical Sensitivities and about her Book
• Naked Truth about MCS
• Meeting betweenMinistry of Health and Multiple Chemical Sensitivity Associations in Spain

In June, the online magazine Delirio published an article about Multiple Chemical Sensitivity (MCS), in which Eva Caballé, the brilliant Spanish MCS blogger at NO FUN, presented herself naked in front of the camera and wrote about “The Naked Truth of MCS.”

For other countries, it often looks like chemically sensitive patients in Germany get more medical help than anywhere else since MCS is recognized as a physical disease in our country. It’s true that MCS is registered as a physical disease and has the ICD-10 code T78.4, which lists MCS in the chapter on injuries and intoxicants. MCS is recognized as a physical disability as well (26.14). But the reality for people with Chemical Sensitivity is hard and bitter. Many are fighting at court to get their disability recognized, but even when having numerous medical reports confirming their condition, they usually loose. Because, like in other countries, sickness from chemicals and modern living is not truly recognized but rather swept under the carpet even though we exist and suffer every day.

Further, in Germany, people with MCS are neglected by society. There are people who are homeless because of MCS. Many have lost their jobs or houses. Many are neglected by their relatives because family members do not understand the disease and are not willing to change habits for their sick loved one. Further still, the chemically sensitive people here in Germany are systematically declared mentally ill or having only psychosomatic symptoms.

Medical Assistance focused on Chemical Sensitivity doesn’t exist in Germany. We still have no adequate clinic with special environmentally controlled rooms where the very sick can be treated. Most environmental doctors don’t diagnose MCS because they fear harassment.

MCS is recognized as a physical disability in Germany but the “unseen” barriers are still everywhere. In public buildings you can still find air fresheners in nearly all bathrooms, harsh chemical cleaners all over the building, and perfumed employees everywhere, so none of us can go there without developing severe physical symptoms. Children who are severely chemically sensitive have no chance to visit a public school or university. We have no such thing as scent-free policies in workplaces, schools, public buildings or departments.

We people with Chemical Sensitivity here in Germany can, like people from many other countries all over the world, shake hands with the Spanish MCS sufferers, because we, too, are left naked and without any help. Our chemically sensitive people cry for help without any response each day, too.

The naked Truth about MCS

from Eva Caballé

We are born naked, they give us cologne, perfumed nappies, clothes washed with softeners, creams with all kinds of possible aromas, and they drive us in plastic stroller while we breathe nice polluted air.

We grow up and they make us believe that we can achieve anything we want, that we can write our future, that the happiness is based in buy everything and the state is here to protect and watch over us, although I had my doubts.

One day, you wake up and nothing has sense. You switch on the table lamp and your eyes get burnt; you open the window and perceive new smells that don’t let you breathe. You turn on the radio and the music booms in your head, so much that you fear it will explode. And you don’t have a hangover. It’s worse. It’s been called Multiple Chemical Sensitivity (MCS) and has come to stay. Your body has said “enough”, has been broken and starts rejecting everything that they told you was essential for your happiness. Your life has taken an unexpected turn, your mind changes, your future vanishes, you don’t have physical nor mental energy. The disease forces you to live your life behind a mask and have been in isolation from the outside world.

Multiple Chemical Sensitivity is not strange, nor a minority. It affects to the 5% of the population. It’s a chronic disease, not psychological, which causes symptoms as a response to a minimal exposure to usual and unnecessary chemical products like bleach, air fresheners, perfumes, etc. We live locked in our houses but it’s not necessary to go out to have a crisis. Your neighbour’s cloths airing outside suffocate you, make you feel sick until you loose consciousness, thanks to the wonderful toxic softeners.

The World Health Organization (WHO) don’t recognize MCS as a disease yet, in spite of having in their possession innumerable studies that prove its existence and the European Parliament includes it inside the growing number of diseases related to environmental factors. The reason is the pressure that the chemical and pharmaceutical industry exerts for not recognize it, because MCS is caused by the chemical products that we use to consume. The economical interests in front of our health. In countries which this problem is recognized, like Germany, medical assistance and financial aids towards it are provided, and in some other countries it is being considered at the moment.

And what’s the situation in Spain? We don’t exist to our paternal government. On top of the drama of suffering MCS, they abandon us, without medical assistance and without any right to a disability benefit when we can’t work. They leave us naked and unprotected, like second class citizens, because we’re the evidence that the current model of society has failed, although nobody wants to see it or to take measures to sort it out.

They too steal any hopes we might have of feeling better. Pharmacists finance research only when they can obtain any profit. As a result of this, minority diseases don’t get research, not even MCS, which affect to the 5% of the population. The chemical and pharmaceutical industry knows that we get sick because we’re intoxicated and the key is not any medicine that will make them rich. The key is to change the model of this society, decreasing the big quantity of chemical products to which we’re exposed each day. Obviously, this can’t be known and they try to deny that MCS exists, because their economical interests would be at stake.

The chemical industry, supported by the government, doesn’t have the right to subjugate the population to the involuntary exposure to chemical substances, whose effects are often unknown. When we develop MCS, we must throw away perfumes, softeners, plastics, etc., to be naked again. We born again, but it’s a new life that we don’t choose. We know by the researches that have been done that MCS has genetic components, so not anybody could develop it, although this doesn’t save you to accumulate toxics until you have a cancer or any other disease related to environmental factors.

Those who suffer MCS want the disease to be recognized; we want to have the same rights as the other chronically ill people; we want society to know the risk they are under; we want the government to protect its citizens and prevent them from getting sick at no cost for them.

We don’t want anybody feeling naked again as a result of suffering MCS.

Photos and text published with author’s permission. Thank you very much Eva!

Foreword: Silvia K. Müller, CSN – Chemical Sensitivity Network, June 2009

Original Article “The naked Truth about MCS”

Canary Report: “The naked Truth about MCS”

Document and English translation – claissification of MCS as physical disease in Germany