You are discovering the Algonauts and their interactive platform. Whether you are ill, living with chronic pain, a carer, a family member, a supporter or ally, an activist, an academic, a researcher or a human rights defender – whether you work in the workplace, in healthcare, or in the fields of housing or access to public spaces – you are asking us about our intentions.

Just as in the Odyssey, in which the Argonauts – heroes – set out on a quest for the sun, the Algonauts – ‘algo’ for pain, ‘nauts’ for navigators – travel the world in search of dialogue, transformation and radical approaches to managing chronic pain.

We are a collective with a fluid structure, as fluid as our state of health, our professional circumstances, and the way we are received by the medical profession and the wider world. We wish to come together to document the ups and downs of chronic pain management. We are addressing patients who are suffering, but not only them. We hope that healthcare professionals (doctors, nurses, nursing assistants, physiotherapists, occupational therapists, psychologists, psychomotor therapists, sports instructors, etc.), who are confronted with a healthcare system more inclined to treat life-threatening illnesses than pain, will join us.

We would also like to see family members and carers – who are misled or silenced by ableism – exchange views with others. We do not overlook intellectuals whose research funding or time is all the more limited because they work in the fields of gender studies, subaltern studies or affect theory. And finally, we are counting on the invisible or repressed activists who are fighting for a democratic healthcare system, against the domination of the medical establishment and the capitalist and patriarchal systems.

We want to preserve a record of what we are experiencing. We want to put into words, sounds and images what shapes our lives: the mistreatment by doctors, the individualisation, victimisation and infantilisation of patients in pain, the way they are made to feel guilty, their isolation, their dehumanisation, the invisibilisation of their disability, inequalities in access to care—whether geographical, financial, social, based on gender, race or class—the deteriorating working conditions of carers, their lack of credibility when it comes to pain, and their devaluation by the hierarchical medical establishment.

We want to write and speak out to share the knowledge we have accumulated through our experience of pain and its management, through our lived experiences, through analysis of the context in which these occur, and through our boundless curiosity and our will to live.

We want to write and speak out to highlight the knowledge of women – who make up the majority on both sides of the pain management spectrum – who fight every day against entrenched stereotypes of gender, race and class, as well as ableist attitudes; against contempt, actual violence and the deliberate ignorance perpetuated by an all-powerful medical establishment. We wish to denounce the gender-agnostic approach of medicine, which confines knowledge within established boundaries, which prioritises research avenues to the point of obliterating hypotheses, which lacks self-reflection, and which serves the specific objectives of a strategy focused more on end-of-life care than on disease prevention, quality of life or inclusion.

We want to write and speak out to build a collective, a network and solidarity with those most affected and invisible (the isolated, the poor, people of colour, the unemployed, people with disabilities…) and to develop a dynamic of knowledge.

We want to politicise chronic pain.

The Algonauts is not a patients’ association, a complaints office, a drugstore, or a supermarket supplying prescriptions or health and wellbeing products. Here, we write and talk about our health and care so that we can take better action. Here, sharing our most personal experiences serves to expose a sick society.

All Algonauts are volunteers.

Our mission is twofold…
– to share written and audio resources – books, articles, public speeches, etc., in full, in three languages, in whatever format you prefer – reading suggestions – books, articles, reports, podcasts, websites – and a calendar of events – conferences, gatherings, demonstrations, training sessions, performances, film screenings, etc. – focusing on chronic pain, bodily abuse, ableism, the lack of health democracy, etc., and which the mainstream media relegate to obscurity.
– to give a voice to all those who have innovative perspectives on chronic pain, taking into account issues of health democracy, class, race and gender. All literary and audio formats, illustrated or otherwise, are welcome:

• imaginary letters or voice messages addressed to abusive doctors or carers, representatives of the health system’s administrative bodies, ignorant or contemptuous policy-makers, or indifferent loved ones;
• autobiographical accounts describing your personal experience of chronic pain;
• poems, songs, synopses;
• illustrations (drawings, collages, photographs, maps, animated images, etc.);
• voice messages to other patients, their loved ones and healthcare professionals, about your experience of the condition, your pain management, the deterioration of your body, the mental strain you endure, the abuse you face in daily life, at work and in healthcare settings, the issue of allies and carers, on current health news, on the knowledge you have accumulated regarding health, but also regarding transport, work, urban planning, housing, etc.

There are several ways to contribute to the platform – and they are, in fact, compatible with one another...

• create or share your own content, whether existing or in the process of being developed, in particular by organising workshops where the voices of everyone involved (patients, carers, family members) can be heard, recorded, noted down and transformed;
• collect content, in your region or elsewhere, and share it;
• suggest useful resources, such as patient organisations, healthcare facilities, health or disability resource centres, bookshops…
• to help moderate the website, i.e. to review the comments and contributions that are submitted, suggest translations, proofread, etc.;
• make a donation to keep the platform running, so that the Algonauts can pay for its hosting, domain name and IT development, as well as to organise workshops here and there with the aim of gathering stories to publish and setting up health solidarity funds...

Although the content on this website has its roots in the written and audio work on fibromyalgia that Joelle Palmieri has been producing since September 2021, under the title ‘La douleur impensée’, it is now in your hands. It is up to you to enrich it with your own stories, outbursts of anger, personal accounts and questions. It is up to you to adapt it as you see fit. It is up to you to structure it.

To contact us, please email contact@algonautes.org

Acknowledgements

Corinne Lepage, actress and community educator,
Hélène Tilman, visual artist and academic researcher,
Thierry Eraud, open-source software developer,
Fil Rivière, open-source software developer