On the occasion of World Depression Day, which is commemorated on January 13, we talked to Isabel Motero, psychologist and current director of the Spanish Federation of Rare Diseases (FEDER), who has dedicated almost 20 years of her professional life to the psychological support of patients with these pathologies and their families and who, throughout this time, has witnessed the enormous emotional difficulties they face and how, many times, the treatment 'that is not seen', remains in the background in front of the urgency of the treatment that 'is seen'.
Isabel Motero recalls her first years at FEDER, where she joined as a psychologist, with nostalgia and at the same time with a hopeful look towards the advances in this field. "When I started, there was nothing written about rare diseases in the field of psychological care. There was no knowledge of these diseases, let alone what it meant to deal with them on a psychological level," she comments, highlighting how isolated this topic was in those days. But the panorama is not the same now; psychology has ceased to be a secondary tool and has become a fundamental piece in improving the quality of life of those affected by these rare pathologies.
From the Federation, they emphasize the importance of emotional support throughout the process between the first symptoms, the diagnosis and the management of the disease, although they emphasize its usefulness when the diagnosis comes late or is uncertain. "One of the most difficult moments is when there is no diagnosis, when you know that something is wrong with your body, but they can't find the answers. That emotional void creates a lot of hopelessness, both for the patient and his or her environment," he explains. This emotional uncertainty is one of the heaviest burdens that patients and their families have to bear, who, in addition to the physical discomfort that the symptoms of their pathology may cause them, face the anguish of not finding clear answers about the reality of what is happening to them.
Emotion management
Over the years, it has been observed that the diagnosis of a rare disease not only affects physically, but triggers many, many emotions that are not easy to deal with. "When someone is dealing with a rare disease, they are not only dealing with the physical symptoms, but also an emotional roller coaster. There's fear, sadness, anger, guilt, especially when dealing with genetic diseases. Parents feel that somehow they could have done something different."
"Often, people tend to isolate themselves. And that has a lot of impact
on mental health. If no one understands you and if you can't
talk to anyone, the pain gets even deeper."
All these emotions are part of a complex process that can be devastating not only for the patient, but also for their loved ones. There are many cases in which families feel completely alone, which translates into an increased emotional burden. "Often, people tend to isolate themselves. And that has a lot of impact on mental health. If no one understands you and if you can't talk to anyone, the pain gets even deeper." This is where FEDER's role becomes crucial: "We work to create support networks, mutual aid groups, where those affected and their families can share their experiences and feel they are not alone," she says.
I remember a mother with epidermolysis bullosa who said: 'It hurts me to heal my son's wounds because I know what it means to do it on my own skin'. Those words are a reflection of how pain is not only physical, but also emotional," recalls Isabel. These shared moments are what, she says, help families understand that they are not alone in their pain, and that suffering can be more bearable when it is shared.
Reality in numbers
Knowing the importance of training to improve psychological care in this field, FEDER, as a sign of the relevance of this issue and its commitment to it, has promoted the creation of tools that allow health professionals to address the specific emotional challenges of rare diseases. In collaboration with the University of Seville, the entity launched a master's degree in psychology and rare diseases, with the aim of training psychologists so that they are well prepared in this field and can specialize in the treatment of these patients: "Knowledge is power, and what we are looking for is that people engaged in psychological care are well prepared to address the emotional complexities that arise when dealing with rare diseases" she confirms.
Despite this, the Federation is well aware of the limitations and lack of resources. "In Spain, the demand for psychological care for rare diseases is extremely high. However, resources are not sufficient. We need more professionals and, above all, greater awareness of mental health in these pathologies," she adds with a tone of urgency. The road, according to her, is long, but it is one of the priorities in this field.
In this context, FEDER data clearly reflect the need for psychological support. In the last year, 2,607 individualized services were provided, distributed among 300 telephone services, 226 face-to-face, 1,190 by e-mail and 891 online. Through these resources, 511 users were assisted, of whom 462 were diagnosed and 49 were undiagnosed.
The data also reflect the positive impact of psychological care. Seventy-six percent of the people obtained a significant improvement in at least 4 of the 6 variables measured by the test, and 64% of the people improved in all the variables evaluated. The improved variables were depression, anxiety, thought problems and psychophysiological symptoms (81% of the people), irritability (74% of the people) and uselessness (70% of the people), and we can conclude that more than 75% of the users have had a significant improvement at an emotional level after their passage through the service.
For Isabel Motero, World Depression Day is not just a date on the calendar, but an opportunity to raise awareness in society about the importance of mental health, especially in patients with rare diseases. "Mental health is a right that should not be ignored. It is not only necessary to accompany patients in their physical treatment, but also in their emotional well-being. And that must be a priority."
As reflected through the data collected by FEDER, our society urgently needs a paradigm shift and a change in the approach to mental health care for rare diseases. "What we seek is not only that patients do not feel alone, but that they feel that there is a team by their side, ready to help them make their lives a little easier," he concludes.
Empathy, emotional support and continuous training are key to improving the quality of life of people living with a rare disease and their families, a challenge that requires everyone's collaboration.
Alliances
With this, the director of FEDER emphasizes that we must not forget the work to be done with other alliances within the field of psychology to continue advancing in knowledge and in the detection of psychological care needs, as well as promoting mental health and well-being of the group. To this end:
- At European level, FEDER participates in the EURORDIS Working Group on Mental Health and Rare Diseases: through which experiences are exchanged with other professionals at European level. In 2025 it plans to detect through a survey called "Rare Barometer Voices" what are the needs that exist on mental health in RD; it has also worked on the co-creation of a "Toolbox" on Mental Health to make available to patients with a rare disease and their families, professionals, and society in general.
- In Spain, the Federation has joined forces with the Hospital Sant Joan de Déu, and through the Share4rare project is conducting a study on the psychological care received by people with rare diseases in Spain. The aim of the study is to evaluate the degree of satisfaction and compliance with the psychological therapy prescribed to rare disease patients in Spain. It also aims to identify unmet needs and to evaluate equity in access to such treatments among the Autonomous Communities of Spain and, at this moment, conclusions are being drawn which will be published soon.
