Mind
“Photography is saving my life”: taking photos as a communication tool

“Photography is saving my life”: taking photos as a communication tool

In the seventies of the twentieth century the official recognition of the therapeutic power of photography took place thanks to the article by Judy Weiser (1975) on “Photo-Therapy”, or on the use of photography within the psychotherapeutic process as a means to explore oneself and bring out non-verbal contents, especially with those patients who had difficulty in bringing out their emotional part closely connected to past experiences of which they were unaware, thus opening up the possibility of using it also with people suffering from rare diseases.

Advertising message Photography, like painting and any other art form, can become a very powerful tool to bring out an “invisible” experience. Photography becomes therapeutic when it takes on the delicate role of facilitating and promoting the recognition of emotional states and their communication.

Edith Kramer, painter and pioneer of art therapy, argued that the work of art was like a “container of emotions” and considered the very act of creating as therapeutic in itself. Photography captures emotions through the lens and the act of photographing can therefore become a therapeutic form. The power of photography in the therapeutic field is not due so much to its artistic validity that it turns out to be irrelevant, but it is given by its effectiveness in recalling the patient’s personal symbolic, in helping him to re-emerge emotions and experiences (Weiser, 2010).

The English term “undiagnosed diseases” means a heterogeneous group of pathologies that remain unnamed due to the lack of a definitive diagnosis. Delay or complete absence of diagnosis represents one of the main obstacles to be overcome for patients with rare diseases, conditions that, being characterized by an extreme variety and a very low incidence, it is very difficult to identify even if they are actually suitable diagnostic tools available. Diagnosis can be defined as the knowledge of the pathogenesis of a given disease, based on clinical and / or genetic findings and able to provide a subsequent prognosis and therapy. The delay in diagnosis, which can significantly change according to the type of pathology and the country of origin of the patient, therefore prevents, first of all, the beginning of a specific treatment path, with irreversible and potentially fatal consequences for the patient. Furthermore, in an attempt to obtain a correct and definitive diagnosis, patients and their families are forced to face a very long, troubled and expensive path, as well as dotted with incorrect and / or approximate medical opinions and inconclusive or unnecessary clinical tests. To all this we must add the fact that, in many cases, it is still possible today that a patient remains undiagnosed for life. Based on what is established in the “Joint international recommendations to address the specific needs of patients with undiagnosed rare diseases” (October 2016), it is appropriate to distinguish two distinct groups of patients without diagnosis: the beginning of a specific treatment path, with irreversible and potentially fatal consequences for the patient. Furthermore, in an attempt to obtain a correct and definitive diagnosis, patients and their families are forced to face a very long, troubled and expensive path, as well as dotted with incorrect and / or approximate medical opinions and inconclusive or unnecessary clinical tests. To all this we must add the fact that, in many cases, it is still possible today that a patient remains undiagnosed for life. Based on what is established in the “Joint international recommendations to address the specific needs of patients with undiagnosed rare diseases” (October 2016), it is appropriate to distinguish two distinct groups of patients without diagnosis: the beginning of a specific treatment path, with irreversible and potentially fatal consequences for the patient. Furthermore, in an attempt to obtain a correct and definitive diagnosis, patients and their families are forced to face a very long, troubled and expensive path, as well as dotted with incorrect and / or approximate medical opinions and inconclusive or unnecessary clinical tests. To all this we must add the fact that, in many cases, it is still possible today that a patient remains undiagnosed for life. Based on what is established in the “Joint international recommendations to address the specific needs of patients with undiagnosed rare diseases” (October 2016), it is appropriate to distinguish two distinct groups of patients without diagnosis: with irreversible and potentially fatal consequences for the patient. Furthermore, in an attempt to obtain a correct and definitive diagnosis, patients and their families are forced to face a very long, troubled and expensive path, as well as dotted with incorrect and / or approximate medical opinions and inconclusive or unnecessary clinical tests. To all this we must add the fact that, in many cases, it is still possible today that a patient remains undiagnosed for life. Based on what is established in the “Joint international recommendations to address the specific needs of patients with undiagnosed rare diseases” (October 2016), it is appropriate to distinguish two distinct groups of patients without diagnosis: with irreversible and potentially fatal consequences for the patient. Furthermore, in an attempt to obtain a correct and definitive diagnosis, patients and their families are forced to face a very long, troubled and expensive path, as well as dotted with incorrect and / or approximate medical opinions and inconclusive or unnecessary clinical tests. To all this we must add the fact that, in many cases, it is still possible today that a patient remains undiagnosed for life. Based on what is established in the “Joint international recommendations to address the specific needs of patients with undiagnosed rare diseases” (October 2016), it is appropriate to distinguish two distinct groups of patients without diagnosis: patients and their families are forced to face a very long, troubled and expensive path, as well as dotted with incorrect and / or approximate medical opinions and inconclusive or unnecessary clinical tests. To all this we must add the fact that, in many cases, it is still possible today that a patient remains undiagnosed for life. Based on what is established in the “Joint international recommendations to address the specific needs of patients with undiagnosed rare diseases” (October 2016), it is appropriate to distinguish two distinct groups of patients without diagnosis: patients and their families are forced to face a very long, troubled and expensive path, as well as dotted with incorrect and / or approximate medical opinions and inconclusive or unnecessary clinical tests. To all this we must add the fact that, in many cases, it is still possible today that a patient remains undiagnosed for life. Based on what is established in the “Joint international recommendations to address the specific needs of patients with undiagnosed rare diseases” (October 2016), it is appropriate to distinguish two distinct groups of patients without diagnosis: To all this we must add the fact that, in many cases, it is still possible today that a patient remains undiagnosed for life. Based on what is established in the “Joint international recommendations to address the specific needs of patients with undiagnosed rare diseases” (October 2016), it is appropriate to distinguish two distinct groups of patients without diagnosis: To all this we must add the fact that, in many cases, it is still possible today that a patient remains undiagnosed for life. Based on what is established in the “Joint international recommendations to address the specific needs of patients with undiagnosed rare diseases” (October 2016), it is appropriate to distinguish two distinct groups of patients without diagnosis:

In both cases, the patients, together with their families, may never receive a diagnosis, and it is not possible to understand a priori which of the two groups a specific patient is in. Despite this, this distinction appears to be fundamental for the design and adoption of strategies capable of improving the diagnosis of rare diseases.

A disease is defined as rare when its prevalence, understood as the number of cases present in a given population, does not exceed a set threshold. In the EU, the threshold is set at 0.05% of the population, i.e. 5 cases per 10,000 people. Half of rare diseases appear at birth or in childhood, the other half occur in adulthood. Most of the rare diseases are of genetic origin but can also be attributed to the result of environmental exposure during pregnancy or during particular phases of life, often in the presence of particular genetic susceptibility (News acquired by the Istituto Superiore di Sanità). Each disease can present itself in different forms and this makes its recognition even more difficult and complicated.

Externally, the person seems to be well, does not show the signs that one would expect to find in a “sick” person precisely because rare diseases are often invisible diseases. The body does not blatant, indeed often contains, a deep malaise, first physical and then psychological. The person sees himself transforming, getting worse. When rare diseases affect the young population, the risk of a psychological breakdown is even higher. The subject is faced with the impossibility of carrying out some activities, often making a comparison between himself and the others, between the former and the now. The disease appears to be aggressive, often there is no cure and only acts to alleviate the symptoms by using drugs, physiotherapy. For most of these diseases, effective treatment is not yet available, but numerous appropriate treatments can improve the quality of life and prolong its duration. In some cases, substantial progress has been made, showing that we must not surrender but, on the contrary, pursue and intensify the efforts of research and social solidarity. All people affected by these diseases face similar difficulties in reaching the diagnosis, in obtaining information, in being oriented towards competent professionals. Access to quality care, social and medical care of the disease, coordination between hospital and basic care, autonomy and social, professional and civic integration are equally problematic. Loneliness is the greatest danger faced by those suffering from one of the many rare diseases, which can occur due to the lack of information and knowledge of the pathology. Loneliness produces disease, disease leads to isolation.

Regardless of the heterogeneity of rare diseases, the affected patients and their families face the same wide range of difficulties that derives directly from the rarity of these pathologies:

The first challenge faced by patients and families is to reach diagnosis: this is often the most disarming battle. This struggle is repeated with each new stage of evolution of the disease. Lack of knowledge about the disease often endangers patients’ lives and leads to huge losses: unnecessary delays and hospitalizations, endless specialist consultations and prescription of inadequate or even useless drugs and treatments. Since so little is known about most rare diseases, an accurate diagnosis is usually late, when the patient has already been treated for many months or even years for another more common disorder. Often, only a few symptoms are recognized and treated.

In the absence of a correct diagnosis, the emergency departments are unable to provide adequate treatment. Misunderstanding, depression, isolation and anxiety are an integral part of the everyday life of most parents of children with rare diseases, especially in the period preceding diagnosis.

Among the points listed above there is an even more important one that often weighs down the clinical picture: the social sphere.

The entire family of a patient with rare diseases, both adult and child, is affected by the disease of their loved one and becomes psychologically, socially, culturally marginalized and is economically vulnerable.

After very long periods, phase 2 is reached: diagnosis. Another crucial moment for patients with rare diseases is the discovery of the diagnosis: despite the progress made in recent years, the diagnosis of rare disease is often inadequately communicated. Many patients and their families describe the moment of communication of the diagnosis as insensitive and not exhaustive. The problem is common among doctors, who too often are not organized or trained in the good practice of communicating diagnoses.

Advertising message Regardless of how rare disease is discovered, it will lead to inevitable change. When the subject receives the diagnosis, although there is initial relief, he subsequently enters a “new” and different phase of life from the previous one. The family setting changes, its family role receives abrupt changes and everything is reorganized and rethought in the “sick” context. The patient thus assumes the role of patient, from which he is difficult to escape: the personal, social and work sphere is reinterpreted in the perspective of the disease, until it often emerges in the mind of those who suffer “I am my disease.” The subject cannot go further, he creates a wall, hiding in it also from the family members themselves and from himself. Psychological support is needed to help rare disease patients and their families cope with their plans for the future and the collapse of their expectations. Every mother and father knows how many worries and hopes for the future are involved when expecting a child. But what it means to have a diagnosis – or to have a child with a diagnosis – of rare disease cannot be explained. Often dreams of affective careers and well-being are replaced by new dreams such as the hope of being able to bring one’s family member home from the hospital or who live peacefully without suffering too much. Every mother and father knows how many worries and hopes for the future are involved when expecting a child. But what it means to have a diagnosis – or to have a child with a diagnosis – of rare disease cannot be explained. Often dreams of affective careers and well-being are replaced by new dreams such as the hope of being able to bring one’s family member home from the hospital or who live peacefully without suffering too much. Every mother and father knows how many worries and hopes for the future are involved when expecting a child. But what it means to have a diagnosis – or to have a child with a diagnosis – of rare disease cannot be explained. Often dreams of affective careers and well-being are replaced by new dreams such as the hope of being able to bring one’s family member home from the hospital or who live peacefully without suffering too much.

The reactions to a situation of suffering are obviously subjective and are connected with the internal mental image that we have of ourselves: it concerns both the way we see ourselves but also the way we want to be seen by others.

In addition to the recognition of its documentary function and aesthetic value, photography can be a powerful mediator between memory and memory. For some time, intimately connected to our cultural identity, photography is capable of replacing the memory with which it communicates and shares its present.

When photography meets a person with a rare disease, a bond can arise. For some of them, photography may be the only way to be able to accept the “rare” label, experience resignation and try to accept yourself. This is not a simple path, often the disease changes and modifies the perception of oneself, it loads the body with a negative value. It may happen that those who suffer from rare diseases isolate themselves, disown their bodies by turning more towards self-denial, struggling to look in the mirror because the latter sends back a self-image that does not coincide. Uncertainty about the nature of one’s malaise often leads the patient, after a sequence of unsatisfactory medical examinations and tests, to isolate himself in his pain and reject any investigation proposal. The closure does not concern only the friendship sphere, the person ends up excluding his own family too. You feel lonely even if you are not. There are rare diseases associated with the phenomenon of the ‘orphan’ drug, which is not found on the market due to the insufficient market demand useful to repay its production, which is combined with the lack of exemptions and assistance at public and private level . The characteristics of rare diseases (low frequency in the population, diagnostic difficulty and consequent peregrination between different health structures, lack of resolutive therapies, chronicity) stimulate experiences of unease and loneliness in people affected by these diseases and in their families more than in other diseases . At this point art enters the scene: photography, dance, painting are only some forms of art capable of bringing out internal experiences. It was only in the seventies of the twentieth century that the official recognition of the therapeutic power of photography took place thanks to the article by Judy Weiser (1975) on “Photo-Therapy”, or on the use of photography within the psychotherapeutic process as means to explore themselves and bring out non-verbal contents, especially with those patients who had difficulty in bringing out their emotional part closely connected to past experiences of which they were unaware. Photo-Therapy is a therapeutic practice in which personal photos, family albums are used, photos taken by others as a stimulating element to deepen understanding and improve therapeutic sessions conducted by specialized professionals (psychologists, psychotherapists) and trained in these techniques, in a way that would not be possible using only words. In Photo-Therapy, the therapist assigns photographic tasks to the patient and then helps him / her to read and understand his / her shots within the therapeutic process. However, photography can also be used in the absence of a specialist, with the aim of increasing the level of self-knowledge, increasing one’s awareness, solving small non-pathological conflicts, activating positive change or improving interpersonal relationships. . It can therefore also be used in didactic, training, educational contexts, but always with non-clinical purposes and without the presence of a psychotherapist. What is promoted in both cases, is not the technique or the skill in making a photo, much space is left to the symbolic path in which capacity and potential are activated. It is helpful and interesting to discover the particular images that hide behind emotions. Adrian Hill, art teacher, underlines the importance of even ending up in himself, as it would be able to produce the emotional discharge necessary to try to vent anguish and pain. Edith Kramer, previously mentioned, shifts the focus to the creative process. It is not the final product that attracts attention, but the creative process as it is a fundamental part of obtaining results:

In the most complex and “rare” situations, unknown and important resources may emerge. Approaching photography, like any art form, arises most of the time spontaneously. Therefore images are used to express the condition of invisibility of pain, of the darkness of an incomplete and not definitive diagnosis. Often photography can be used as a moment of sharing, also through social networks, to tell about the disease, the reality of hospitals, to tell about oneself. The photographic image proves to be a useful tool to guide the patient towards the acceptance of difficult situations and often unsustainable feelings, where it is necessary to consolidate a communication that goes beyond the minutes. Before we get to this stage, the path is long, often it is preceded by a period of non-acceptance, isolation, closure. Getting your life back in hand requires a high internal percentage of resilience. The ability to reinvent yourself, to “absorb a shock without breaking”, leads, in small steps, the patient to look around and find personal and subjective tools useful to continue. The comparison between the first, the now and the after can make you fall victim to depression and tempt the subject on several occasions. The family and the subject are in a fragile and unstable position, but above all new, unmanageable and intolerable in some cases. Some find their way out of photography. The simple being able to focus on the image, to try to capture the details, it probably acts as an alternative to brooding or rumination that can frame thought in a vicious circle. As a result, seeing the suffering person move, go out, engage in an activity, concentrate, is also helpful to family members. We could assume at this point that photography therefore has a multiplicity of functions that have a positive impact on the whole family unit. Photography acquires a curative power for the person (hence the reference to the naiads). Photography should however always be accompanied by a therapeutic and family support path to reinforce personal resources. However, it should be remembered that the success is not due to a “magical” power attributable to an object such as the camera, it arises from a long job, often marked by falls, failures and successes attributable to the subject. The person moves away from his comfort zone to start “walking” again.