I guess you don’t know what it is. Mar Alcalá, who suffers from it, explains it like this: “It’s like being dead while alive.” It is an ailment that mainly affects women and Mar says that this female preponderance contributes to their invisibility and lack of interest in funding their research. Not even its incidence is well known; The sources range between 0.5% and 2.57% of the population. Mar (60 years old, psychologist, former official of the Madrid city council), has suffered since childhood from outbreaks of what she later realized was fibromyalgia, another mostly female disease that has been ignored for decades: I remember psychiatrist friends commenting that the ones they said they suffered from fibromyalgia. It was finally recognized by the WHO in 1992, and . It has a neurological origin; It is caused by neurochemical imbalances in the central nervous system and causes, among other things, a lot of pain. All this also applies to encephalomyelitis. In fact, the latest medical trends recommend encompassing these two diseases and other similar ones under the name of . They have no cure and their origin is unknown, although a certain relationship with some viruses, such as mononucleosis, has been considered.
Mar continued working all her life, helped by a . But in 2019 something changed; he lost his strength. She began to feel so tired that when she returned from work she would go to bed until the next morning. And soon a day came when he could no longer get up. It was as if it had been turned off. Encephalomyelitis, also called chronic fatigue syndrome, is brutal. The body lacks energy even to digest. In the most serious cases they have to be fed by tube. “Sometimes I have stopped drinking so I don’t have to go to the bathroom, because you can’t get up.” They suffer a total disruption of the autonomic nervous system: they may suddenly be frozen or on fire; sleeping 36 hours straight or not sleeping for two days. There is also cognitive impairment. And the pain. Mar has been in bed for four years. He has lost his muscles. .
But there is something even worse, and that is that this condition is not diagnosed by anyone within our health system. The same thing that happened with fibromyalgia happens again with her: they refer patients to psychiatry, as if everything were the result of their heads. So they live in the double prison of their dead body and the. And of course the patients are depressed and distressed; but this is a logical consequence of the disease, not the origin of it. In fact, the leading cause of death for encephalomyelitis patients is suicide.
Mar has private insurance; Through him she managed to undergo the appropriate tests and be diagnosed. But other patients are not that lucky. Like the formidable Olga Sánchez, 50 years old, a former dental clinic worker, who lives in Leganés on a fourth floor without an elevator. Olga suffered sepsis eight years ago due to an IUD infection, and from then on everything collapsed. He can barely move; There is a video on his Instagram () of how he climbs the stairs with the help of his partner that makes your hair stand on end: “It took an hour and I ended up vomiting.” At the last check-up, the rheumatologist ruled that, with conventional tests, there was nothing wrong, and sent her to psychiatry. “I felt so bad that when I left there I told my partner: take me to the emergency psychologist or I’m leaving.” Again, suicide flying over as the only way out, when they give you no other option. “But then I broke down; I have a son and dear people, I do not want euthanasia. So with four other girls we have started a campaign to make the disease visible. First, on the Osoigo platform we have posted a petition for our disability to be recognized, that there are sick women who are cleaners and are in a wheelchair and they are discharged.” It is the problem of the lack of diagnosis, of the invisibility of this terrible disease. If they gather 1,500 signatures, they will send the petition to Congress. But they only have 200 (help, please: ). “And then we want to go to television. We have to make it known what this is,” says our broken warrior fiercely. Is there anyone out there capable of picking up this bottle thrown into a sea of suffering?
