It has been almost 35 years since anorexia nervosa devastated Begoña V’s body and mind. “A lifetime,” she sighs. He has spent more time dealing with the disease than without it. She is 49 years old and since she was 15, when that insecure girl with low self-esteem began to eat restrictive diets, she has been immersed in the convoluted destructive spiral of eating disorders. She has gone through outpatient treatments, psychologists, psychiatrists and several admissions. But the disease is still there, entrenched. “This has nothing to do with food or the body. That’s just a symptom. The problem is mental, not food,” she emphasizes again and again.
“The last opportunity” was given a couple of months ago, he says. On April 2, he entered the Comprehensive Recovery Unit for adults with eating disorders (ED) of high complexity and duration, a pioneering device managed by the Bellvitge hospital and the Sagrat Cor de Germanes Hospitalàries of Martorell, to treat patients with a resistant disease of many years of evolution. “When they offered me to come here, I was reluctant about the idea, but I had no way out. It was terrible. My life had no meaning. I self-harmed, I binged, I caused hypoglycemia. It was killing me. I didn’t give a damn about everything,” she recalls excitedly.
Eating disorders are serious mental illnesses. Anorexia nervosa, bulimia or binge eating disorder are some of them, but not only: there are also other more non-specific conditions – atypical, they call them – that do not fit exactly within any of those categories, but which are also EDs, equally complex and dangerous. Or even more, points out Fernando Fernández Aranda, clinical psychologist and director of the Bellvitge-Sagrat Cor TCA Area, where this new unit is located: “They are more resistant to treatment because they seem less severe and less attention is paid to them. But they last longer and have a greater risk of chronicity.” For example, anorexia without extreme underweight, bulimia with binge eating and vomiting more spaced out over time.
The disease transcends the stereotype: the majority of people with an eating disorder are women, yes; But not all of them are young, nor do they all suffer from extreme thinness. And altered eating behavior is only, as Begoña advanced, the tip of the iceberg, just a symptom of deeper and more complex damage on a mental level.
The prevalence of EDs is around 4% of the population (most of them women) between 12 and 21 years old, but there are cases, like Begoña’s, that persist for decades. According to Fernández Aranda, “four out of 10 patients do not recover or only partially recover.”
Albert Garcia
In this group of patients are the most serious cases, who even die from the consequences of the disease, but also those chronic patients who, although they are not in the most acute and extreme phase of the disorder where their life is in imminent danger, are They have been stuck with chronic health problems that reduce their quality of life. “In those who recover only partially, the disease is impacting their daily lives, at the family, individual and work levels. They can lead, more or less, a life, but generally they are alone and the disorder has an impact,” describes the specialist, who is also head of the Bellvitge ED Unit.
Begoña went unnoticed for many years. Or “pulling”, at least. “Since she wasn’t as underweight as she was, they didn’t give it much importance, although inside I felt very bad. I was unhappy,” she explains. But she held on for years, until her life began to be in danger and then, yes, they had to hospitalize her. “It was my only way out: either I entered or I went to the other side,” she says. And with each admission, something improved and she regained weight, but her head “wasn’t right.” The last time, she already saw it coming: “I felt very comfortable with the support and affection of the medical team, but when they discharged me I told them: ‘You have released me into the sea without a float.’ And I relapsed again.”
These are cases trapped in a therapeutic and administrative limbo, without specific treatments or resources to address this complexity. “Until now what was done was a little what could be done: do the treatment again, see if there are motivating factors… But we have seen that what had not worked before, because it was repeated more times, is not going to work,” admits the clinical psychologist.
The new device launched by Bellvitge and the Sagrat Cor de Martorell tries to plug this care gap. It is, in the words of Fernández Aranda, “a hope” for a very specific patient profile: those with the entrenched disease, of many years of evolution, who have exhausted all therapeutic alternatives. “You don’t have to focus on what has failed, like just the eating disorder or the weight. We have to look at what other aspects are maintaining this situation of the eating problem: motivation, intensive family work, life expectancy, what objectives it has in the medium term… And then yes, also look at core aspects of the eating disorder that, throughout Better yet, they have not been addressed,” explains the specialist. The unit, located in the Sagrat Cor facilities, has been operating since last January and has around twenty places.
Albert Garcia
Edurne (not her real name) currently occupies one of them. She is 31 years old and since she was 15 she has also had anorexia nervosa. “I have had many admissions: she entered, gained weight, left and lost weight again,” she recalls. He has been in this center for three months and assures that she is completely different from the others, the “hardest of all.” And she reflects: “It is a very hard process because you take on more responsibility. On the other sites, you have very strict rules. Here you decide whether to do something or not. They set rules so that there is no risk of malnutrition, of course, but you decide. This freedom they give you means taking responsibility. And it’s very positive because when you’re out, you don’t have someone telling you to eat. You will do it because you want to.”
Co-responsibility is key in this new therapeutic approach, highlights Nuria Jaurrieta-Guarner, coordinator of the new unit: “We must approach it from a non-control perspective and work hard on the responsibility of the person themselves within this process of change.” In fact, Fernández Aranda explains, weight does not set the pace of the therapeutic process: “Just as in other units they have visits based on weight, here they have visits [independientemente del peso] because this is another therapeutic tool. And discharges are not subject to the weight they regain or not because, perhaps, they have been stuck at a low weight (not in a critical situation, of course) for years or they have a more or less normal weight, but they are not “He is discharged because there are objectives that continue to be worked on.”
The therapeutic journey lasts between three or four months. A time focused on recovery at all levels: from muscle recovery with a physiotherapist to the recovery of the person and their social skills with psychological support. “There is a first adaptation phase, where they arrive at the unit and motivational aspects are worked on. Then, another phase of empowerment of the person and work with families and, finally, a pre-discharge stage where the bond and psychosocial recovery are worked on, in which skills are trained to be used outside,” explains the coordinator. At this time, there are seven patients admitted and several cases under study.
Not anyone can enter. This unit is designed only for patients with a long duration of illness and who are stuck after having exhausted all therapeutic alternatives in hospital ACT units. It is, in fact, these services that have the power to refer the most appropriate profiles to the new comprehensive unit, with which they work in a coordinated and networked manner – the patients, after three or four months of hospitalization with the Jaurrieta-Guarner, continue to be monitored in their reference UTCA.
Edurne is about to start a work internship that she can combine with income. She is a little afraid of returning to the world of work and not enjoying it, she says, because the disease, in the end, is that: “A fear, a can’t, that limits your day to day life.” But she wants to try. And to see her friends. And to travel. “Before I had no future. She lived day to day and that’s it. She didn’t want to think because she didn’t know if there would be a tomorrow. But now I miss my life.”
In these two months, Begoña has also begun to see a light of hope. “I have discovered things about myself that I didn’t know. There is no color. Before she was so lost, that she didn’t see any goals. But now I see them a little clearer: I would like to get closer to my daughter, go back to my job and enjoy it, play sports without being forced and eat without thinking about whether I am going to gain weight.” Sitting in the room where they eat and do activities, she speaks with glassy eyes and smiles for the first time: “I have spent weeks in which I have felt terrible and wanted to run away, but I stay because I want to heal and experience what I have never felt: the happiness. I want to have a better life,” she smiles for the first time.
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