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On Ethnography, Community Pain Work, and Listening

chronic pain community work ethnography fibromyalgia listening sanja maretic Jun 11, 2022

In the waiting...

blog written by Sanja Maretic

It is an immense privilege to enter a social field through the hard work of community pain service and meet people in their lived worlds. Not only to meet them, but to co-share a space and cultivate a praxis of being with them: get to know about their struggles, joys, how they carve out meaningful lives. 

Ethnography comes from the Greek word ethnos meaning culture and graphos meaning study. It is a study about people (I deliberately use the word people over culture here). Ethnography came into my life very early on - as a fourteen year old girl enamoured with literature there was nothing I enjoyed more than situating myself in the world of a book: among the affective and symbolic landscape of characters, their relationships, language and meaning, space and time. Understanding how the book breathes and breathing with it. Seventeen years later, I am situated within a deprived rural health centre on the east coast of the United Kingdom as a pain clinician and I find myself doing the very same thing: observing, participating and making sense of it all.

One of the things I love about ethnographic practice is its' invitation to identify your social position - race, class, gender, ideological beliefs - to achieve a reflexive stance of ethnographic inquiry. Entering this working class neighbourhood, I was invited to reflect on my own privileges and assumptions that I brought with me. I am a white European woman with middle class education. I come from a working class background and I grew up in a country scarred by war. There are things that I don’t know in my clinical practice and things that I have inevitably missed, but I rarely fail to recognise poverty. Writing about this topic is therefore as personal as it is political to me.  

Classical clinical education, certainly my osteopathic education, trained my eyes to find a problem and subsequent solution, whilst ethnography taught me to take time, to peer laterally and examine the world outside through the (often painful) process of self-examination. In this liminal space between outside and inside, doing and being, the voice of a clinician-ethnographer gets born. 

Clinical ethnography turns to the act of writing as a form of activism. By the very act of slowly noticing and introspection, ethnographic writing juxtaposes the rushed and manic temporal logic that dominates healthcare settings, and thereby offers an alternative perspective. A breath to catch and a sigh to reflect on.  

On one of many work day train journeys across the county, I was provided with an opportunity to catch my breath and reflect. Her name was Indigo (not her real name) and she was one of many poor people seeking care amidst a setting haunted by epistemic injustice, history of underinvestment and lack of government funding.  

The story that I am about to share was an attempt to try to come close to understanding an experience of being marginalized as a chronic pain patient, as a woman, as a young woman, and as a working class woman. It was also an attempt in trying to understand the paradox of being looked at like you are unwell but being denied the prerogative of being ill at the same time; one of many paradoxes of pain. The story is fictionalised and it combines three people in to one in order to protect their identities.  

 

Indigo, her blue eyes and black box full of pain - a short story about pain and institutional violence 

On the east of the UK there is a county called Lonelyshire. Lonelyshire is famous for its farms and flat landscape upon which the vast blue sky stretches like a whale's insides stretched over poor Jonah. There is a sense of surrender and long forgetting in the flatness of the landscape. The same one you find in people's sufferings. It is like the very land is telling you "Live in silence. Don't look up. Don't question”. 

Indigo didn't question much when her doctor told her she's too young to have Fibromyalgia. She believed him and wondered whether she was really imagining the pain that walked all over her body and kept her awake at night.  

Indigo is twenty two and she is from the east coast. The further east you go, the sadder it gets. Indigo walked into my clinic just as her life was turning from bad to worse; a year ago she fell down the stairs and ever since she's been in horrendous pain.  

Indigo has deep blue eyes that carry the sadness that her words don't say. They don t look at me, those deep blue eyes, they look through me piercing the heart of my soul. Indigo puts her pain in the black box and pretends it is not there. In one of our sessions, we attempt to open up the box by breaking a hole on the side. It is too heavy - the pain - she says. We cover up the hole. It is not time yet.  

Indigo works in the local grocery store and she's just found out she's been made redundant. She's useless to them with her pain. She says they look at her when she's struggling to lift the heavy boxes. "But she looks fine" - they say - "and she's also pretty. Can you be that pretty and be in pain? I don't think so. Something else must be wrong with her." Indigo internalises their words and stores the sadness in her deep blue eyes. The black box of pain gets heavier and heavier.  

"Please don't send me back to X services, they make me feel worse”. I am curious as to why she would say that so I look at the notes from the services, every letter begins with "I reviewed Miss Swamp today and she looks fine again”. I inhale deeply.  

What is the impact of not being valued and heard as a young person in pain? What is the impact of spending years trying to prove that you are disabled? What is the impact of the constant looks that keep telling you somethings wrong with you, while denying you the very prerogative of being ill at the same time? What is the impact of questioning your own sanity because of someone else's stupidity? How do you ever find a journey back to yourself after that?  

"One last question” - Indigo says, while leaving the room - "When I push my trolley down the street and people look at me like something's wrong with me. Can you give me something for that?” 

 

Listening

Indigo’s lived powerlessness and tragedy of not being seen speaks volumes to people experiencing chronic pain, especially in marginalised rural settings. Between not having enough money to afford the bus to the lack of buses turning up at Indigo’s village, Indigo stopped showing up for her appointments. I desperately wanted to arrange a taxi but I got lost in my own lack of knowing how to perform such structural intervention as a busy clinician.  

Looking back now, I am comforted to know that we shared a moment of human connection - a felt moment of true presence where two people see each other. A moment made possible by true listening summoned through relationship.

In his chapter From Fires Escapes to Qualitative Data: Pedagogical Urging, Embodied Research and Narrative Medicine’s Ear of the Heart medical anthropologist Edgar Rivera Colon talks about transformative listening and shares this paragraph about listening by activist lawyer William Stringfellow:  

''Listening is rare habit among human beings. You cannot listen to the word another is speaking if you are preoccupied with your appearance or impressing the other, or if you are trying to decide what you are going to say when the other stops talking, or if you are debating whether the word being spoken is true or relevant or agreeable. Such matters have their place, but only after listening to the word as the word is being uttered. Listening in other words is primitive act of love, in which a person gives himself to another’s word, making himself accessible and vulnerable to that word.’’  

 

References: 

Rivera Colon, E. (2017) From Fires Escapes to Qualitative Data: Pedagogical Urging, Embodied Research and Narrative Medicine’s Ear of the Heart in Charon et al. The Principles and Practice of Narrative Medicine, Oxford University Press, pp.267

 

 

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