World Fibromyalgia Day: “I don't remember what it's like to live without pain”

Every May 12, World Fibromyalgia and Chronic Fatigue Syndrome Day is celebrated. Several Aragonese voices tell what it is like to live with this chronic, invisible and limiting illness.

At 66 years old, Angelines Muñoz She has not been able to receive a hug without fear of pain or a loving touch on the back for more than two decades, nor can she carry large bags or weights, or put on a bra normally. These are just some of the limitations that come with living with the Fibromyalgia, a chronic disease that causes pain throughout the body, fatigue and other symptoms and about which, as several Aragonese patients claim, we have “no idea about anything.”

Angelines is accompanied by Cristina Balaguer, her 34-year-old daughter who was diagnosed with the same disease 9 years ago. “Well, nothing, she touched me,” she says she thought as soon as she left the consultation. Next?: "The world came over me". And she knew the disease firsthand since she was a child. “I have had to help her move, get dressed, even turn around on the towel when sunbathing. There are better and worse days, but you know it never goes away,” he says.

Today, like every May 12, when World Fibromyalgia and Chronic Fatigue Syndrome Day is celebrated, they agree on the need to talk about this chronic, invisible and limiting disease, but which "does not stop you, if it does not stop you." you let". “We have a motto, always, when one of us can't take it anymore, the other pushes her and says “With two cojones”, there is no other option, we always have to continue,” says Angelines.

In the case of Angelines, who was diagnosed for the first time in 1998, the challenge of facing a disease that was almost unknown at that time was a true odyssey. “It was not even accepted as a cause of disability, something that was achieved for the first time a year ago,” admits the Zaragoza native. In addition, this disease is closely related to others, such as depression: “It is important to get out of the house, talk to people, get the sun. “My daughter challenged me to get ready every day just to take a moment and look a little better.”

Despite their fighting attitude, they want to highlight the hardness of living with two ailments: Angelines remembers one of the phrases that her psychologist told her, a statement that changed her life. “She told me that I had an illness, but that she didn't necessarily have me. She has touched us, we are alive, and life is like that,” she concludes.

“We need to talk about her because general ignorance is like an extra weight that is added to this backpack”adds his daughter, Cristina, who works as a Community Manager from home. A job that she can do, because the pain allows it. “It makes me very angry because I feel like I have a life ahead of me, but some days I wouldn't get out of bed. I do it for my daughters, I have no other choice,” she admits.

Because wanting is not always power, but, at least, they don't stop trying. “There are two ways of looking at the illness, thinking about how bad you are and how everything hurts or thinking, today I'm a little better! It is a disease that is closely linked to depression and it is very easy to fall into it. To continue, it is important to feel good,” she admits.

What hurts you the most? Let no one ask them how they are. Something that entails the fact that it is an invisible disease for the majority of society. “This is not a specific moment, it is something that is there 365 days. We take antidepressants, painkillers, anti-inflammatories, and we live with a body that, sometimes, does not accompany you in what you want to do,” summarizes Angelines.

The best medicine? Comprehension

And like them Nearly 900.000 people - 3,5% of the Spanish population - suffer from this disease according to data from the Spanish Society of Rheumatology in Spain. “In Aragon there is a Federation of associations that includes Zaragoza, Huesca and Teruel, and we are dedicated to supporting, helping and understanding the sick person, which is what we miss the most,” explains Sofía del Arco, member of the board. of the Fibromyalgia and Chronic Fatigue Syndrome Association of Zaragoza (Asafa), which currently represents more than 600 people.

“What we ask is to make ourselves visible, that we are not treated invisibly, which is our daily life,” he highlights. A disease that affects men and women, and people of all ages without exception.. “Before it was only related to a very specific profile, but today that has changed. At Asafa we have members diagnosed at a very young age,” adds del Arco, who at 32 years old was diagnosed four years ago. “Each person is affected in a different way, that is why we need to talk about it, and above all, to investigate it.”

Throughout the day this Thursday, between 10.00:13.30 a.m. and 12:19 p.m., there will be four information tables to give visibility to this ailment in the Aragonese capital. Specifically in Plaza del Pilar and in the Ramón y Cajal specialty centers - Paseo María Agustín, 78 -, Grande Covián - Avenida Mayor Francisco Caballero, XNUMX - and Inocencio Jiménez - Avenida Navarra, XNUMX -.