Embodied letters: duoethnography of fibromyalgia delegitimizationAbstract
The Embodied Letters emerge from the themes that arose from the production of duoethnographic data from two women with fibromyalgia, who, over the course of a year, maintained contact and shared experiences about the invisibility of the syndrome. Using creative writing, the participants' experiences (the authors Renata and Mohara) originated the character Elise, who corresponds by letter with the anthropologist David Le Breton, researcher in the field of the anthropology of body and pain. The study adopts a qualitative approach and uses collaborative autoethnography, based on the theory of corporeality. The goal is to discuss the delegitimization of fibromyalgia, the fat body, and their social and affective relationships. The project seeks to provoke reflections on the devaluation of pain and its social consequences, proposing a welcoming approach to fibromyalgia patients.
Keywords
Autoethnography; Fibromyalgia; Fatphobia; Anthropology
Resumo
As Cartas Corporificadas surgem com base nos temas que emergiram da produção de dados duetnográficos de duas mulheres com fibromialgia que, ao longo de um ano, mantiveram contato e compartilharam experiências sobre a invisibilidade da síndrome. Utilizando a escrita criativa, as vivências das participantes (as autoras Renata e Mohara) deram origem à personagem Elise, que se corresponde por cartas com o antropólogo David Le Breton, estudioso do campo da antropologia do corpo e da dor. O estudo adota a abordagem qualitativa e usa a autoetnografia colaborativa, com base na teoria da corporeidade. O objetivo é dialogar sobre a deslegitimação da fibromialgia, o corpo gordo e suas relações sociais afetivas. O projeto visa provocar reflexões sobre a desvalorização da dor e seus desdobramentos sociais, propondo uma abordagem acolhedora em relação à síndrome.
Palavras-chave
Autoetnografia; Fibromialgia; Gordofobia; Antropologia
Resumen
Las Cartas Corporificadas surgen de los temas que emergieron de la producción de datos duoetnográficos de dos mujeres con fibromialgia, quienes, a lo largo de un año, mantuvieron contacto y compartieron experiencias sobre la invisibilidad del síndrome. Utilizando la escritura creativa, las vivencias de las participantes (autores Renata y Mohara) dieron origen al personaje Elise, quien mantiene correspondencia por cartas con el antropólogo Le Breton, investigador de antropología del cuerpo y dolor. El estudio adopta un enfoque cualitativo y utiliza la autoetnografía colaborativa, basado en la teoría de la corporeidad. El objetivo es dialogar sobre la deslegitimación de la fibromialgia, el cuerpo gordo y sus relaciones sociales y afectivas. El proyecto busca reflexionar sobre la desvalorización del dolor y sus consecuencias sociales, proponiendo un enfoque acogedor hacia el paciente con fibromialgia.
Palabras clave
Autoetnografía; Fibromialgia; Gordofobia; Antropología
Writing letters is writing yourself. For yourself and for a desire of poetics, for another person. I will not dwell on the official concepts and historicity of the Letter, although I find the language of the structure it contains interesting: place, date, addressee, salutation, body, farewell and signature. Body. The body of a letter — whether it is love for yearning, lack of love for caution or life as it is — it is a beam of light on oneself and, most of the time, on embodied perceptions1.
This creative project is the product of the master’s dissertation in which the researcher Renata Lopes Serra Negra used collaborative autoethnography as a methodology, more specifically duoethnography, building the research along with another woman who also lives with fibromyalgia: Mohara Magalhães Bhering Villaça. Simone de Araújo Medina Mendonça and Djenane Ramalho de Oliveira are the research advisors1.
Collaborative research has the potential to generate a deeper understanding of oneself and others, in the sociocultural context, due to the dialogical process with each other’s stories2. Duoethnography emerged as a methodology of dialogic research: not a conversation between people, but a dialogue between people and their perceptions of cultural phenomena, which generate new meanings3.
This project was approved by the Human Research Ethics Committee of the Federal University of Minas Gerais CAAE No. 58535122.1.0000.5149.
The proposal continues with letters addressed to David Le Breton, a French anthropologist, as an intertwining of bodies, not as a singular person in the romantic narrative, but as a possibility of representing a group, based on the dialogue between two women with fibromyalgia. We transform the collaborative autoethnography into an embodied narrative permeated by a fat body. Fatphobia, portrayed here, manifests itself as a cruel flow of exclusion, which denies fat people the right to occupy certain spaces. It is a structural and cultural stigmatization, reproduced in various social contexts, and which is expressed through devaluing, humiliation, diminishing, offenses and restrictions imposed on fat bodies in general4.
Among the possibilities of writing style for the analysis of autoethnographic data, creating addressed letters allows for the expansion of the boundaries of pain and feelings — often too sensitive to position themselves as “theirs”5. From the first dialogue between Renata and Mohara, in the Department of Anthropology of the Federal University of Minas Gerais (UFMG), until March 2024, the interviews, meetings, and reflective dialogues resulted in four embodied letters to anthropologist David Le Breton6. This author offers a critical lens to understand the body as an embodied experience and a field of social dispute. His work is fundamental to reflect on how contemporary societies produce subjectivities, regulate behaviors and, at the same time, how individuals elaborate forms of resistance and invention through their bodies. By displacing the body from a merely biological or instrumental dimension, Le Breton understands it as a language and a narrative of the self. This perspective dialogues with his research on the anthropology of emotions, suffering and pain, in which the body emerges as a privileged territory — almost sacred — for the engraving of human experiences. By examining risk practices, body modifications, self-mutilation or states of vulnerability, the author highlights how subjects seek, through the body, how to give meaning to existence in contexts marked by social fragmentation. By integrating the body, emotion and culture, his contribution goes beyond the limits of the Anthropology of the Body: it constitutes a reflection on contemporary ways of being, feeling and inhabiting the world6.
And we present here, as Elise, the production of our data regarding the delegitimization of pain and the sociocultural suffering behind such embodied condensation. Elise is the character who merges the two experiences into one body — partly because of the similarities of what we experience with chronic pain, partly because of the unification of voices.
Elise, as a character and inspiration, came from the song “A Letter to Elise” by the post-punk group The Cure. Interestingly, Robert Smith (lead singer of the band) says that the song was directly inspired by Franz Kafka’s book, Letters to Felice. It is in this encounter that Elise presents herself here as a potential healing and transformation — beyond the “painful looks and broken hearts”, as part of a dialogical process of self-reconstruction.
Reflecting on the production of new writings, with a more creative perspective, on such dense themes, sheds light on our need for care also through language1. It is an invitation to break down the barriers that society often imposes, allowing for a deeper and more genuine dialogue.
Happy corresponding!
Belo Horizonte, May 18, 2023.
Dear Le Breton,
What’s the weather like in Strasbourg? I checked the internet and saw that you are also enjoying some sunny days. What a joy this autumn-like Spring of ours!
Today is May 18th. Here in Brazil, this date is a national milestone of the anti-asylum struggle: a political day and, at the same time, a day of celebration of bodies. Not just any bodies, the tam-tam ones. Perhaps you do not immediately understand this expression; very well, it would represent madness in loose laughter.
Strange habit of ours, the one of distinguishing normal and pathological bodies. We can discuss in other letters the pathologization and genealogy of this madness. Such pity Canguilhem is not alive to dance in correspondence with us. Did you know him? He was also French.
Like every May 18, there was a great act throughout the city: a battle to combat the idea that people in mental suffering should be isolated in the name of supposed treatments. It had percussive instruments and drums, paper flowers in vibrant colors, dancing rhythms and cries of resistance: “Remake hope, endorsing the social, ‘pay attention’: save Mental Health”. The samba at our feet was mixed with the struggle, as a symbol of affirmation of life, freedom and dignity. I was there. And so do you, in my thoughts. The day was bathed in sun and cold wind; the streets were filled with hope. I’m sure you would have been delighted with the experience.
I remembered your writings about the rejoicing of carnival and medieval popular festivals: “those of the mad, the ass, the innocents”, which were the core of the sociability of the body6. A large social body in celebration, in contrast to the “official” parties, based on the separation and hierarchization of the actors. There is no Easter laughter in a political act, but it is still a revelation of a regime of the body that is not restricted only to the subject – it overflows into the community.
I wrapped myself in the poetics of the resistance of these bodies that suffer against the neoliberal logic that limits us, medicalizes us and kills us. Throughout the act, I reflected on the lack of legitimacy of my feelings and my pain, due to the invisibility of fibromyalgia. I am interested here in the interrelationship between this illegitimacy, my behaviors of isolation and the reproduction of violence. Isolation — so fought today in the act — presented itself to me as a control strategy in the face of the stigma of fibromyalgia. A cyclical movement: keeping it secret and maintaining the persona of someone previously healthy and “normal”.
Cruel, this social performance, isn’t it?!
A few days ago, I thought about writing to you, but I was immersed in pain and spent days in an admitted melancholy. I couldn’t hold the pen, nor tidy up the house, and social cont(r)act fragmented me in this limbo between the perceptions of others and my sense of identity.
That’s not me, my dear!
My life began to be measured in relief intervals and intensity scales. Who are you when pain occupies all spaces? What kind of person is this who cannot keep the house clean? Those were the first thoughts. The ability to accomplish certain things — to a certain standard — was fundamental to my identity. When this capacity fades, who is left (to me)?
It is silence that dresses me:
Rough wool on sleepless nights,
Light linen in nameless mourning,
Invisible stitching.
And sometimes I lose
almost completely
the one I was,
or the one I dreamed of being.
with other ambitions
sometimes smaller and simpler,
others, gloomier.
sometimes even,
When something shines beyond the dim light,
It is possible to feel more alive:
a breath that leads me to more overflows.
Some authors argue that chronic pain impacts the Self in three main ways: identity restriction (what people could be); bodily restriction (the body’s relationship with the environment); and activity restriction (what they could do)7.
Translating pain into a name — which means something — is extremely necessary to delimit its contours, so that this situation named “pain” can be both transitory and perennial. The silencing of fibromyalgia carries with it the singular place of being an invisible syndrome: there are no biochemical markers or imaging tests. The absence of laboratory evidence impacts not only the doctor-patient relationship, but also the intimate ability to deal with the meaning of the disease; as if the clinical diagnosis was too fragile to be sustained without a role that determines something, a serology that exemplifies it, a medical statistic capable of materializing the expectations1.
I recently read a chapter in which the authors8, discussing the sense of identity in patients with chronic pain, reveals that prolonged suffering is a threat to identity, and that this contradiction between the painful body and the fragmented self could become an obstacle to therapeutic rehabilitation if not recognized. If, to you, the body is the “first evidence of oneself”6 — a means by which one relates to the world — I believe that pain breaks this evidence, don’t you think? The body ceases to be an ally and becomes an estrangement. This generates a sense of dispossession of oneself, since it is the pain that rules. Writing now, I better understand the suffering behind this ruptured identity, because I also suffer from the narrative that I myself wove about myself. That continuous line of my identity between the “then” and the “now” has been broken.
It is as if each gesture were remembered by a fissure: there is no longer spontaneity, but constant vigilance.
Reverie, as if the words and the flow of time were intertwined. Maybe it’s the wind at the end of the day, maybe the vibrant colors, maybe the off-season carnival, an almost ethereal movement between what’s real and what’s imagined. But today, the Walt Whitman’s verse — “I am large, I contain multitudes” — has taken on other contours. Because of the inner and intimate vastness that we carry, because of the complexity and plurality of the human being. Chronic pain does tear the identity: it displaces, disorganizes, dispossesses. But it also forces us to reinvent what it means to be oneself, even if in pain.
With affection,
Elise.
Belo Horizonte, July 10, 2023.
Dear Le Breton,
I hope you’re enjoying your vacation with a well-deserved rest.
Today is Monday and I just got back from a trip from my parents’ house. The seat of the bus squeezed me throughout the journey. I got up at the stop and stretched. The pain, in vertical twisting, scratched the entire spine and went down to the right thigh.
Prelude to despair. I feel exhausted.
I was very reflective with his last letter and the expression mise en scène!
Pain affects our ability to do things that, socially, are described as “simple,” and these restrictions caused by pain impact how we move and interact with our environment. A game of pretending regarding appearances, expression of feelings and their relationship with pain. This “staging” becomes, then, an adaptation strategy, correct? In my case, the body restriction is increased by the lack of accessibility for a fat body. This ends up affecting my perception of “place in the social world”, as it limits my access. If the body is the interface between the social and the individual, how can we reconstruct the relationship with the world with dissident bodies?
I canceled an appointment today because of a work training scheduled at the last minute. See, the mood was already not good because of the traveling and got worse with the change in schedule. The training took place outside the walls of the university, in another building, on the third floor. I arrived and the elevator was not working; I stared at the stairs for a while, thinking about the childish desire to teleport — like Nightcrawler. I don’t know if you’re familiar with the Marvel comic book character Nightcrawler: a mutant with the ability to instantly teleport anywhere he can visualize or imagine — a very useful ability, especially in combat or fleeing situations.
Why didn’t I run away today?
I took a breath, leaned over the railing and, already on the first steps, another employee found me, with a smile on her face — not at all compatible with my mood — and said euphorically:
— Let’s take advantage of the lack of power to the elevator and lose a few kilos!
I didn’t have the energy to answer; I needed to conserve my strength to climb the remaining two floors. I remembered your writings on Anthropology of Pain9: “Pain paralyzes the activity of thought or the exercise of life. It interferes in the game of desire, in the social bond” — a sad truth perceived at that moment, my dear.
I write because, in recent months, I have found myself in a contracted movement of socialization: university chairs, bars, cafes, buses do not accommodate me; And if I “force” this entrance, there is no comfort — on the contrary, there is an enhancement of pain.
I arrive in the living room, silently, wishing to be invisible, and I find small chairs in rows.
overflow without sound.
Others
in which I avoid myself entirely.
Here, I find two facets of the social delegitimization of pain: on the one hand, bodily restriction and the lack of accessibility for certain bodies; on the other, the restriction of activity, crossed not only by chronic pain, but by the social pain of my body.
I asked the coordinator for another chair. I didn’t need to explain, but I reported that in addition to the chair not fitting me, it presses on the thigh, a painful point of fibromyalgia.
— You don’t look sick!
The pain of fibromyalgia is inevitable and it seems that it is necessary to live according to certain social norms. In crisis, this Elise absorbs the empty room and the air full of screams. I didn’t last ten minutes in the training and left.
Settles into the folds of the body
like an old guest,
with the intimacy of those who know
my shortcuts.
Leave notes down my spine,
changes the furniture of breathing.
The right thigh, previously compressed, now burns in sparks, which even spasm in pain. I think I’m going to succumb to it.
Elise.
Belo Horizonte, September 22, 2023.
Dear Le Breton,
Last week I wrote you a postcard, but the news was so many that they ended up filling the space where I would write your address. Everything became a meaningless tangle, and I gave up on the idea of writing to you. However, today, while I was returning home, it started to rain. I walked into a coffee shop, ordered a hot coffee, and went back to writing — as if finally finding stillness after the storm.
In my last letter I was not well, I was bitter. And I’ll tell you what happened to me soon after. I decided to look for another doctor to monitor these pains and, once again, that whole body journey came to light. The appointment was in an annex of a city hospital: same cold colors, same smell of disinfectant. In the waiting room, the chairs did not support me. The secretary looked at me from my feet to my colored hair and said, calmly:
— The endocrinology office is next door.
I took a deep breath. I imagined, for a few seconds, a bloody scene worthy of Tarantino, with flying blows, strikes and the secretary’s tongue cut out. I took a deep breath. I imagined the scene. And laughed.
— Miss, I have an appointment with Dr. Otávio.
Otávio didn’t seem like a good name to me, he rhymed mediocrely with “sucker”. And again, I laughed. Somehow, I can’t explain in what manner, but I knew that from then on it would only be “downhill”. Do you understand this expression? It is the same as saying: to worsen, aggravate, make it worse.
De mal en pis.
The secretary collected my documents and asked me to wait with other patients, ladies who were also moving uncomfortably in the chairs. I waited in the company of a book I bought a few days ago in a used bookstore: Correspondences of Mário Carneiro and Iberê Camargo10 (both Brazilian artists). Shortly before my name was announced, I read a letter from Iberê — a painter and printmaker — about his last painting and the suffering in pain shortly after the production of the still life. He writes:
“I’m stuffy, my dear.
It’s been a month since I’ve left the house, reading and thinking about my leg.
Today I will try to start my life over, I will try to forget the leg - it is the doctor’s advice - to see the percentage of psychic that exists in this pain.
The doctor says that the cause is not serious, I can live like this, but there is the matter of pain.”
It was December 30, 1957, when Iberê wrote to Mário, after several medical consultations, gradual pain and a diagnosis of herniated disc in the spine.
I read this passage so many times that, when they called me, I repeated in a low voice:
— But there is the matter of pain.
there
standing
stunned
In front of the half-open door and the 1.90m doctor.
I almost didn’t get in.
I shouldn’t have entered.
The whole journey of that day already whispered the disaster of the next fifteen minutes of consultation.
I entered. Once again, the chair did not fit me. The doctor was not an orthopedist; I don’t like orthopedists, because they only prescribe anti-inflammatories and restrictive diets. They don’t listen to me. They don’t look at me. They look at the foot, the knee, the spine and the hernia. I chose a doctor from the Pain Clinic. In my imagination, a pain specialist should have some social literacy on pain.
That’s not what happened to me.
He asked if I was married — he asked me looking at the computer and not at me.
- No. I replied shortly, monosyllabically.
— If you lose weight, you’ll get a good man to get married.” — said, laughing to himself, that white, tall, thin doctor, who didn’t look at me.
A raging storm formed inside me. I took a deep breath. I understood that it would not be the space to talk about my bisexuality, the end of an abusive marriage with a woman, how I don’t want my body domesticated by the sexist looks of a sick society. I took another deep breath:
— Doctor, I don’t want to get married. I want to not feel pain, that’s why I’m here.
The doctor arched his eyebrow, laughed mockingly, continued to type vain words, and questioned where the pain was.
The whole body, I thought. How would I express that my whole body burns in pain? Days before the consultation, I read articles regarding the inadequacy of language to express the subjective experience of patients11. Pain challenges and destroys language: it causes a regression to a pre-linguistic state12. I found it fascinating! It made me want to invent words, because they don’t accompany my feelings, I feel as if it were necessary to create a language, a neologism, a dictionary to say soulpain, painside, painhome, painall, paingst, painmittent, painpulse, painsistence. I don’t know. Something that can say precisely what it is to feel, how one feels, in the language of the threshold of pain, transiting the border between intensities that are difficult to define.
How do I portray my pain in an “accurate” way so that my legitimacy is not questioned?
How do you communicate pain that is intensely subjective and invisible?
— I feel pain all over my body, Doctor. Sometimes it burns, radiates, cuts sharply like a thin, long needle into the skin. But most of the time, it feels like a blinker: where each point of the body hurts simultaneously, in a frenzy, just like Christmas lights.
It was the best metaphor that could occur to me. And I’m almost sure he didn’t listen to me, because soon after he suggested that I lose weight:
— Have you ever tried to lose weight? I’ll give you a good medication to lose weight and some exams. I suggest looking for a nutritionist, going to the gym and then coming back. Alright?
What a limbo was that dialogue? My perception of this type of health professional is that of a mere workload fulfiller, exempt from commitment to caring for others. And again, I saw my fat body shrouded in the fog of pathologization. I remembered your writings regarding the social construction of the mechanization of the body: medicine, in constructing its knowledge and know-how, neglected the subject, his history, his social environment, his desire, his anguish and the meaning of the disease13. It reduced it to the “bodily mechanism”.
Is this the fate of my body?
To be just an object of knowledge, to be medicalized?
I hit the table with closed fists, spoke loudly; said that my problem was not being fat. I insulted him by calling him a social media doctor and left, slamming the door.
I left choking on the crying I’ve been carrying for years:
first departure from the office,
second exit from the main gate,
third exit from the hospital limits.
Three exits to, finally, collapse in tears.
How long will my body be violated in such a way?
Are there other ways to react to violence in a non-violent way?
Or is this “docile” behavior a colonized response that is expected from my fat body?
I plunged into questioning and anger. I wanted to stop the flow of thought, to interrupt this social need to always compose a character for others. I was exhausted.
Actually... To disappear from yourself is a temptation, my dear!
I called an app car home, so that, on that day, I could die.
The seat belt did not fasten again. And for the first time, I didn’t try to deflate my belly so that it would go fasten.
These are challenging times, in which fragility hides between the lines of each meeting. And often there is no howl that sustains it. I will try to stand firm.
With affection,
Elise.
Belo Horizonte, November 09, 2023.
Dear Le Breton,
Happy birthday — a little late!
I wish you body in motion in your new year: movement and poetry.
This month marks three years since I separated and started living alone. A friend said that the body feels the “anniversary” of certain traumas. However, for me, November has been the anniversary of traumatic resolutions. Not that I don’t feel them, but I can resignify them today.
This letter is to expose what I call the delegitimization of intimates, because for a long time it was a reality: family, friendships and (ex)wife.
Pain has always been part of my life since I was very young, and in moments of pain crisis, I heard my parents telling me that I was boring. I complained about the loud music, the smells, the bright lights and how nauseous and sad I felt.
B O R I N G
I grew up with the certainty that my identity was limited to being boring.
Fat and boring.
The emotional cartography that was formed was one of compensation: a search to be very funny, very intelligent, intellectual and pleasant, to “compensate” for the fact of being fat and boring. It was years in this eagerness to be numerous.
During my therapeutic process, I understood that verbalizing my paingst should not represent a synonym for a “grumpy, inconvenient or boring” person, nor a burden. After all, the weight I carried inside me was not something to be swallowed but expressed.
In the silent noise of many unspoken conversations, in the unspoken words, I understood that my parents’ difficulty in processing their own emotions influenced the way I related to mine. Speech, loaded with frustrations, resentments or unfulfilled expectations transferred to me a weight that was not mine. And I, without knowing it, internalized it as if they were mine too. A long process, this of understanding oneself as something else, beyond what was mirrored to me.
I ended up identifying with a harrowing passage of yours:
“The initial solidarity turns into distrust and sometimes rejection. Some families remain in solidarity, but others destroy themselves because of a lack of understanding of those who, with the passage of time, end up thinking that they are exaggerating and that they could take more charge of themselves” 9.
This silent battle within often grows due to the lack of support and understanding, becoming a fight without shields. For a long time, I felt alone, in painful crises.
Years later, already away from my parents’ house, I went to live with two friends. The conviviality declined a little before the diagnosis, when the pain was driving me crazy and, again, I found myself alone. One scene remains vivid in my memory: I completed two days with a fragmented and fragile sleep, without a bath, with throbbing pain and almost zero hunger. Around 6:00 p.m., a bolt of relief crossed my Being. The first wish was a long shower and a meal, both hot.
It took me almost an hour on this journey: getting out of bed, taking off my clothes, taking a shower (without washing my hair), putting on clean clothes and going to the kitchen. I was unnerved in pain, limped to the idea of the illusion of healing.
All right, s l o w l y.
“Soup will do me good”, I thought.
My trembling hands anchored every wall of the house, in a qualified solitude. I felt my whole body vibrating, radiating into the space between my contour and the desired object. I didn’t need drugs to experience synesthesia that day: I moved in tandem with the vibrations. My every move was a melancholic dance, as if my kitchen was breathing with me, entering every pore of my skin. The pain seems like a continuous dance, spinning, adjusting, swaying the limbs to the rhythmic sound of inconstancy. I could feel my taste buds, for the first time, murmuring the return of desire.
Pain translates the world into the silent and unique language of those who carry it!
I no longer knew the time or how long it had taken me to chop the food: garlic, leeks, carrots, potatoes, onions, and zucchini. With each pre-prepared ingredient, I proudly repeated:
— It’s almost over, Elise!
I waited standing, almost anesthetized, until the soup boiled. I added all the spices I had, plus ginger. Ginger cures it all, I thought. For a few seconds I questioned if I was really standing or if the painsistence was installed in me.
I wasn’t alone at home. A colleague watched television in the living room, ignoring this entire tear path – whether due to pain or onions.
Didn’t say anything.
Didn’t help me in the least.
Didn’t get off the couch.
Today, writing about this episode, I remember your passage on the ritualization of pain: “His apparent ability to assume alone and in silence his painful ordeal contrasts with the tears and lamentations he admitted...”9
Mise en scène!
After the soup was ready, I walked slowly to the living room and settled down at the table. I sat down slowly, brought the bowl to my face-nose, and as I smelled its aroma, a wave of emotion enveloped me, like thin golden satin ribbons. There it was, in front of me, a colorful and nutritious bowl, like a warm embrace that I longed for.
Un bol d’amour!
Two spoonful and a deafening silence. The colleague invited me to a party at the house of a mutual acquaintance. I thought about how much we lived in parallel realities. Did he know? Me celebrating the synesthetic path and the comfort-food meal, and he in the Saturday night fever. I don’t know how long he watched me, as if waiting for a positive answer. And I wondered when I would dance again.
I answered:
— No, thank you. Maybe next time.
Those pre-made card phrases.
One more spoon of soup and I hear:
— You should try harder, Elise.
I couldn’t hold back the tear or the spoon:
— Harder? Should I try harder? Do you understand how cruel this phrase is?
I don’t think I’ll ever forget that event, when I finally broke the pattern of being pleasant to others. At that moment, I saw the same behaviors that my parents had when I was younger, echoing in me. The fraction of silence between us made me redraw the final scene of the movie Closer, in which Alice (Natalie Portman) says to Dan (Jude Law) that she no longer loves him:
— Since when? He asks.
— Now. From now on.
From now on: I moved a month later.
A leap in time: already married, I traveled with my (now ex) wife and a mutual friend. Chile’s icy cold worsened the joint pain, breathing and socializing. I made an effort to get out of the hotel and see the sights. My friend was a much more affectionate and receptive person with my pain. And as she welcomed me more, the wife started to welcome me too.
The wife respected, to a certain degree, when I said I was in crisis, but it was not something complete. Because it bothered her too, precisely because of the restriction of activity: if I felt pain, I couldn’t do certain things she wanted. And again, the failure of listening, with that look of “your humor is not interesting to me!”.
A hearing of repulsion: I don’t want you to suffer because I can’t hear your suffering.
Questioning the social construction of pain, as well as the construction of violence, passes through this social place that implicitly defines the “dose of expected pain”1. You yourself bring in your writings that every experience, every illness and every injury is associated with a diffuse margin of suffering9; however, it must be considered that certain bodies go through another configuration of the limits of pain: fat bodies, black bodies, LGBTQIAP+ bodies have their painful limits questioned in face of the “suffering man” that is emphasizes so much. If there is a path that social traditions trace for pain, certainly these bodies are at the limits, at the margins of suffering, don’t you agree?1
After the diagnosis, my ex-wife no longer treated me aggressively. Could it be that my pain was only legitimized when other people were present?
I remembered my mother, who only validated my pain when she heard from the doctor: It’s fibromyalgia!
This whole affective journey generated in me anguished pain and distrust in others. I separated and built new affective bonds. A construction of potable relationships, based on careful dialogue. Today, I think that this care is only possible when we recognize the vulnerability of others and when we renounce the desire to “colonize” the experience of others.
Today my painful complaints have the value of language!
With affection,
Elise.
[To read while listening to A Letter to Elise - The Cure]
Robert Smith, singer and songwriter of the British band The Cure, announces, as did Kafka in his letters, that there is nothing else he can do but suffer under the sign of frustration and helplessness. Both are passionately melancholic.
Elise, on the other hand, brings light to the possibilities of emotional resonance with herself and with the Other. The body, so present in each letter, is also non-biological and Elise builds it in other connections — whether through correspondence with Le Breton, or through relations of intensity. The last letter ends by declaring: "Today my painful complaints have the value of language!", it is because it recognizes, in this gesture, the strength of the construction of bonds as a value of reinsertion into the world, as a therapeutic, social and emotional process.
Pain, paradoxically, can be a way of expanding consciousness and understanding — both of oneself and of the Other. Elise places pain as not only a negative experience or something to be avoided, but as an instrument that, when experienced, allows a deepening of oneself, one's own limits and the limits of the other. Pain, in this context, can be seen as an experience that challenges boundaries: it forces us to question our capacities, fears, and resistances. This perspective suggests a more integrative point of view on pain, not as isolation, but as the possibility of deep connection with our vulnerabilities, and those of others.
For Le Breton, chronic pain is a rupture of identity because it destabilizes the relationship between body, temporality and social life. The subject ceases to inhabit the world in a fluid way and starts to live in a body that constantly denounces and exposes its fragility. The challenge, then — Elise's and ours — is to reconstruct narratives that allow us to sustain a sense of self in the midst of suffering.
As we explore Renata and Mohara, the experiences of delegitimization of fibromyalgia through writing, we naturally adopt different voices or characters in relation to the syndrome — in reference to our complex, multivocal, and narratively structured Self. Recalling episodes, distancing oneself, and developing a duoethnographic awareness of feelings of fragmentation, evaluating our bodies and adapting different voices, brought new perspectives on traumatic events1.
The body should not be a mere instrument of knowledge, but a space for living, experiencing and transforming. And the possibilities of collaborative autoethnography open the way for a hopeful process of resignification of the painful experience. By involving an exchange, this shared writing also builds new meanings to suffering and adversity, while strengthening the voice of those who are so often pushed to the margins of society.
Sharing our stories is to keep echoing a voice that changes but remains powerful. It is a form of resistance and perpetuation of experiences and emotions. Writing letters is writing yourself: a gesture of transformation, in which individual and collective stories are intertwined, creating a space of hope.
With affection,
Renata Lopes Serra Negra
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Negra RLS, Villaça MMB, Ramalho-de-Oliveira D, Mendonça SAM. Embodied letters: duoethnography of fibromyalgia delegitimization. Interface (Botucatu). 2025; 29: e250730 https://doi.org/10.1590/interface.250730
Data Availability
Research data is only available upon request.
References
- 1 Serra Negra RL. O silêncio molhado dos dias: duoetnografia sobre a experiência da fibromialgia [dissertação]. Belo Horizonte: Faculdade de Farmácia, Universidade Federal de Minas Gerais; 2024.
- 2 Chang H, Ngunjiri F, Hernandez K. Collaborative autoethnography. New York: Routledge; 2016.
- 3 Sawyer RD, Norris J. Duoethnography: understanding qualitative research. New York: Oxford University Press; 2013.
- 4 Jimenez-Jimenez MLJ. Gordofobia: injustiça epistemológica sobre corpos gordos. Epistemol Sul. 2021; 4(1):144-61.
- 5 Lengelle R. Writing the self and bereavement: dialogical means and markers of moving through grief. Life Writing. 2020; 17(1):103-22.
- 6 Le Breton D. Antropologia do corpo. 4a ed. Petrópolis: Vozes; 2016.
- 7 Miles A, Curran HV, Pearce S, Allan L. Managing constraint: the experience of people with chronic pain. Soc Sci Med. 2005; 61(2):431-41.
- 8 Crow M, Mathieson F, Howard C, Liossi C. Pain takes over everything: the experience of pain and strategies for management. In: Rysewyk SV, editor. Meanings of pain. Cham: Springer; 2019. p. 59-76.
- 9 Le Breton D. Antropologia da dor. São Paulo: Fap-Unifesp; 2013.
- 10 Camargo I, Carnero M. Correspondência Iberê Camargo: Mário Carnero. Rio de Janeiro: Casa da Palavra; 1999.
- 11 Sim J, Madden S. Illness experience in fibromyalgia syndrome: a metasynthesis of qualitative studies. Soc Sci Med. 2008; 67:57-67.
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12 Soares M. (Des)localizações: geografias do corpo na poesia de Adrienne Rich [Internet]. Coimbra: Cabo dos Trabalhos; 2016 [citado 1 Jul 2024]. Disponível em: https://cabodostrabalhos.ces.uc.pt/n13/documentos/12_MartaSoares.pdf
» https://cabodostrabalhos.ces.uc.pt/n13/documentos/12_MartaSoares.pdf - 13 Le Breton D. Adeus ao corpo: antropologia e sociedade. Campinas: Papirus; 2003.
Edited by
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Editor
Elizabeth Maria Freire de Araujo Lima https://orcid.org/0000-0003-0590-620X
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Associated editor
Juliana Araujo Silva https://orcid.org/0000-0002-2028-9417
