Dimensione Sollievo is the first community dedicated to chronic pain in Italy, a growing digital space with over 19,100 followers. Research with Narrative Medicine highlights the importance of patients’ experiences: pervasive impact on quality of life, risk of inactivity and distrust, and the importance of recognition and the human factor in pain management
Milan, Dec. 14, 2023 – A major qualitative survey on chronic pain experiences was conducted between July and October 2023, analyzing in depth 9792 comments collected from 5733 users on the Facebook page Dimensione Sollievo: la Community sul Dolore Cronico, which has over 19,100 followers.
ISTUD Sanità e Salute-with unconditional support from Grünenthal-a leading pain company-presents the outcome of a significant survey on chronic pain by applying the gaze of Narrative Medicine to the many stories emerging from the digital initiative.
Ninety percent of the storytellers provided 1 to 3 comments-stories in response to the Page’s posts. Those who tell their stories are typically people who are exhausted by pain, and skeptical, constantly searching for a listening ear, certainty, and information. To offer answers, even on the web, the importance of avoiding algorithms or standardized language emerges, instead favoring encounters with ‘evolving’ experiences of pain, and offering stimuli that can as much accompany forms of coping as recognize and respect suffering.
Moreover, this is a pool composed mainly of women (over 85 percent), over 60, with experiences of chronic pain even beyond 10 years.
Thus, a ‘gender issue’ also emerges related to pain and how it relates to other forms of inequality, for example, in the area of reconciling work, care and relationship time.
The analysis of the material, published between October 2020 and June 2023, followed the scientific approach of Narrative Medicine, focusing on patients as bearers of relevant experiences related to pain, their daily relationship with it and with significant people in their lives. That is, these are stories that can delve into socially relevant issues. The purpose of the study is to promote the digital community tool, but also, and more importantly, to interrogate the community, scientific and non-scientific, on the relevance of narrative approaches to understanding the burdensome impact of chronic pain and the difficulties of care and management.
Dimensione Sollievo investigated for the first time the digital narrative of chronic pain in Italy: what patients feel, what are the prevailing languages, their expressed and unexpressed needs.
“Pain everywhere in the body, tiredness, (tired of feeling pain). Often confusion. Not having the strength to hold a cup of coffee. Not sleeping because of severe pain-this is not life.”
“NO ONE LIKES TO TALK ABOUT DISEASES, as long as they are not affected themselves because’ the disease scares (as if everyone is exempt from it) and it bothers one who complains, because’ the model of our society is based on WINNING, efficient, healthy, fit people, who have to hide their frailty, must not cry in public, must always be perfect and functioning, if not, off the cliff of Sparta.”
Emerging needs
The impact of chronic pain is totalizing and pervasive (it changes “everything,” is there “all the time,” lasts “years”) compromising trust and social relationships-primarily, in the family and work environment-but also the management of daily needs, quality of sleep, and expenses necessary for one’s well-being.
Poorly understood opportunities for care in the local area are described as uneven in terms of location and cost, further exacerbating inequalities.
The political dimension of pain recognition, by institutions and specialists, is highly felt, garnering the attention of users and recalling its relevance (“We invisible … Unrecognized … for many imaginary sufferers !!!”).
Chronic pain sufferers prefer online forms of ‘venting,’ but find a space with potential for recognition and ‘activation,’ that is, for the maturation of conscious responses and a fertile encounter with the Other.
Malaise emerges as a ‘fire’, a ‘burning’, a ‘weight’ similar to that of ‘stones’. It acts through “clamps,” “pins,” or like the blade of a “knife.” It is also a “beast,” a “hell,” an “ordeal,” an “invisible” and “deaf” enemy because it is uncommunicable, unidentified, unrecognized (“I have had chronic migraine silence and darkness from everyone for 30 years”).
Eloquent stories
‘Still’ and ‘chaos’ stories prevail, according to the language of Narrative Medicine, manifesting the prevalence of experiences lacking coping strategies, confidence or plans for the future. The continuous search for answers and the idea of a ‘non-life’ compromised by pain prevails (“I’d like to fall asleep. And wake up as I was years ago. Otherwise it’s not worth waking up.”).
Personal experience-through images and feelings-can prevail over technical-specialist language, providing a semantic bridge for systemic improvement in doctor-patient communications.
Pain stories invoke the need for communication styles that are nonjudgmental and ‘open,’ that is, capable of recognizing personal experience, welcoming it and accompanying it, where possible, to opportunities for change.
Languages rich in metaphors, visual and archetypal expressions, evidencing communication difficulties, but also a primal search for safety and sharing around grief, which can find in social networks a welcoming environment.
“How I understand you🫂””🙏❤️❤️❤️❤️”
Emblematic is the use of emoji, which offer an innovative look at understanding the experience conveyed through social. The festive communication of one’s passions and joys emerges, but also the suffering and incommunicability of grief. The emoji, on many occasions, also offer a silent gesture of closeness in the face of grief and suffering.
“@Dimensione Sollievo: la Community sul Dolore Cronico good idea sharing is always a relief”
“Thank you very much, at least there is one person who understands me…hoping for a better life, I greet you with much love!”
The digital initiative “Dimensione Sollievo – al centro del Dolore Cronico”, promoted by Grünenthal Italy since 2020, responds to the need of patients and caregivers to access reliable and quality information. The platform represents the digital community dedicated to pain in Italy, and is developed on a dedicated website, Facebook page, and Spotify, offering a crucial space for welcoming, informing, and sharing.
“As a leading company, a reference point in the area of pain in Italy,” comments Laura Premoli, General Manager Grünenthal Italia, “we are proud to make available, in addition to our portfolio and training activities, initiatives to raise awareness about pain and its appropriate management: given the high impact of pain, patients suffering from it cannot remain unheard, unsupported or unrecognized by the entire Health System. Dimensione Sollievo“, Premoli continues, “fits into this approach; it is the first community on pain in Italy and represents an accessible and recognized initiative, which continues to evolve and is now oriented to become a platform for real relief through words and sharing, as highlighted by the recent ISTUD analysis.
About Grünenthal
Grünenthal is a global leader in the management of pain and related diseases. We are a privately held, research-based pharmaceutical company with a long history of providing innovative treatments and cutting-edge technologies for patients around the world. Our goal is to improve patients’ lives, and innovation is our passion. We are focusing all our activities and efforts to lavo-rare toward our vision of a pain-free world.
Headquartered in Aachen, Germany, Grünenthal is a fully integrated company offering support along the entire value chain, from drug development to commercialization. We are present in 28 countries with subsidiaries in Europe, Latin America, and the United States, have a broad portfolio of products available in about 100 countries, and employ 4,400 people worldwide.
More than 520 people are employed, nationwide, in the Grünenthal Italy subsidiary and in the production plant in Origgio, one of the group’s five production sites along with those in Chile, Ecuador, Germany and Switzerland. Acquired by Grünenthal in 1996, the 50,000 sq. m. manufacturing plant is also engaged in contract manufacturing, assembly and packaging services and boasts a production capacity capable of dispensing more than 2 billion individual units per year and exporting 98 percent of production to Europe, Asia and South America.