Before we entered the headquarters of the AMAI TLP association in a basement on Calle Coslada in Madrid, we were warned: “It’s better to leave any preconceptions outside.” And, for us, that meant a notebook full of blank pages. For the first time in this Neighborhood Superheroes series on social projects, we arrived without a single question prepared. Ready to watch and listen. Because questions are sometimes riddled with prejudices.

TEXT FRANCISCO JAVIER SANCHO MAS IMAGES LEAFHOPPER

We come running in. We are late. Barely time to say good morning and, right away, with scarcely any preparation, we are taken to a group session. We are told to just sit there and watch. There are six young women there, all aged between 20 and 30. Timidness reigns in the atmosphere. For some of them, having journalists with cameras present is something new. Standing in front of a screen is Alejandra, a psychologist. Today’s session is to address the issue of “Functioning and Autonomy”. This is the fifth attended by this group of girls, all diagnosed with Borderline Personality Disorder. From now on, we will simply call this BPD.

What is BPD?

According to one of the most influential mental health organizations, the American Psychiatric Association (APA), BPD is characterized by “a pervasive pattern of instability in interpersonal relationships, self-image and affect, as well as markedly impulsive behavior” (2001).

From what we know of BPD, the six girls we are with today suffer difficulties, to a greater or lesser degree, when it comes to managing their emotions and impulses. In many cases, this leads to suicidal or self-harm tendencies. And their suffering fans out, affecting those around them.

We are in this basement full of twists and turns that lead to large and medium-sized rooms used for meetings and consultations. There is even a kitchen and an interior patio for cultivating plants. This basement resembles an extremely active brain. AMAI TLP (the initials of this Madrid BPD Research Aid Association) was founded in 2000 by relatives of those affected by this disorder. Their mission is to help these individuals and their families, as well as to carry out research and disseminate a better understanding of BPD and the care required by those affected by it.

The 21st-century disease?

In Spain, BPD was identified fairly recently and it is estimated that it affects around two to three percent of the population. In the United States, it is thought to be four percent. These figures are pretty relative, as most of those affected have never been diagnosed. However, ever more cases are being discovered, to the point that some are calling it the 21st-century disease, more prevalent than schizophrenia. Teresa Oñate, president of AMAI TLP, stresses that prevention should start in schools, with very young children and, perhaps, even from pregnancy.

“When someone has a mental illness,” Teresa states, “it has repercussions for some ten others close to them. And those suffering require practically 24/7 care.” She knows this from personal experience, as she will tell us later.

Cristina has come to therapy today. She has a quiet voice, like someone breathing deeply.

How to get through to you?

We ask the girls if they ever let their closest relatives know they are reaching breaking point. And how they send out an SOS.

“Well,” says Eva, “if I spend a week locked up in my room, without eating or sleeping, that’s a pretty clear message, isn’t it?” What do you do when you feel really bad? we ask them. Marian says that she sleeps, writes, or stimulates her senses: “I put ice on my wrists, or smell really stinky things.”

Eva realizes things are bad when she has spent a lot of her time eating her hair. “I suffer trichotillomania and trichophagia.” She pulls out her hair and eats it. “To calm myself, I start walking around the room playing music really loud.” Rebeca frequently suffers nightmares of aggressions. When they repeat over several nights, she knows she is getting worse.

Cristina and Ana

Thanks to the close to 300 members of this association (some relatives of those affected, and others not) and the support of private institutions such as Fundación MAPFRE, AMAI can help further research into BPD, the attention those who suffer it require, and prevention measures.

Teresa, the association’s president, explains that they are providing an average of 5,000 consultations each month in this center. The attention they offer is highly specialized. “It always begins with an interview and the case is then referred to the psychologist, for individual therapy, whether with the relative or the patient. We have music therapy, mindfulness, yoga, dance, behavioral therapy, family schools and excursions. The patients are allowed out once a month. And, once a year, an excursion is arranged with the patient’s family, in the company of a psychologist. Some people who have come here were in a really bad way and yet, today, they are working and leading a normal life.”

The psychologist Ana Cabadas has been working in AMAI for two and a half years. She currently treats 42 people with BPD in AMAI. Ana has been both a witness and companion in the recuperation process of Cristina, 23 years of age, really tall with an imposing figure worthy of a model. She was previously afflicted by tremendous emotional instability, intense suffering and an inability to maintain a work routine. She also went through a toxic dependency relationship, really common among those with BPD, as they panic at the thought of being abandoned and having to deal with loneliness.

Cristina has come to therapy today. She has a quiet voice, like someone breathing deeply. “I found it hard to interact with others as a teenager,” she confesses. “BPD is a difficult issue to handle. One of the symptoms I had was isolation.

At the age of 16, I was sent to a boarding school. I had a hard time there. And I was bullied. They started giving me medication at a very young age. A social security specialist recommended I come to this center.”

Patients often come to AMAI after seeking information from social media or the Internet, or they are referred here from some health center. AMAI coordinates with mental health centers to offer these therapies that the system does not provide. Cristina has been helped dramatically by the sessions with Ana. “Now that I live alone, and thanks to the therapy, I have no problem talking to my parents. This used to be very difficult, as we argued about everything. My father even criticized the way I dressed, or because he believed I was doing things to hurt him. Now that I know the diagnosis and have come to family therapy sessions, things are very different.”

“It’s easier to admit that you are blind, but, ah my friend, admitting that you have a mental illness is not… I don’t know at what point our society decided that the head does not belong to the body.”

To sum up her improvement, Cristina tells us that she has a job (an IT position in a detective agency, no less). She lives in her own home and even takes care of a pet. “Not so long ago I felt incapable of any of this.” The change of perspective was crucial for her. “Before I came to AMAI, it was the world that had the problem, not me.”

My son Guillermo

Teresa learned about BPD as one of her six children suffers this disorder. His name is Guillermo. “We were living in Catalonia at the time,” she tells us. Dr. Vincent Rubio started working with people with BPD there and my son was in jail. He was serving a ten-year sentence.” But prison is not the solution, Teresa declares, demonstrating the good humor that is her most effective weapon.

Where is Guillermo now? “He’s in the San Juan de Dios hospital, where he should be. They’re looking after him very well. There are people who, if they are not treated in time, cannot live in society without the risk of spiraling out of control. It is much better to have a center where they can live and receive appropriate care. Prison was the worst possible thing for him. He is very affectionate. But he’s now 42 and he’s fine, which is what matters most.”

What if we are wrong? A judge gives his view

At the Justice and Mental Health Conference organized by AMAI in November 2018, Arturo Beltrán, president of the Fifth Criminal Division at the Provincial High Court of Madrid, admitted that he had been unaware of this problem for too long. “And, over the last few days, it has dawned on me that we may have been making terrible or plain stupid mistakes” in respect of individuals with BPD who have been sentenced or sent to prison.

Teresa, who has suffered this firsthand with her son, tries to put things into perspective, while confirming the gravity of this matter: “Sometimes, the judges want to send a detainee to hospital, but there are not enough beds.” The declarations of both Teresa and the judge speak volumes about the failure of a system unable to respond to an ailment affecting three percent of our society (or maybe a lot more).

The existence of AMAI TLP is, in itself, a ray of hope for so many people who, as Teresa said, arrive there weary of seeking dedicated, caring attention. AMAI’s endeavors to train professionals from various sectors – such as health, education, families and the judicial system – are key to responding in a more comprehensive manner to a problem that concerns us all.

We arrived with a blank notebook and stacks of doubts. Today, thanks to AMAI, we too have discovered that we can indeed feel less lonely when we are alone.