When you can't find the words: Using body mapping to communicate patients' experiences of Long Covid 2024 Jokela-Pansini et al

[Andy]

Highlights

• Long Covid patients often struggle to communicate their experiences of illness due to a lack of language to describe their diverse physical, cognitive and emotional symptoms. They also often encounter stigma and dismissive attitudes, which can discourage them from sharing their experiences.
• The body mapping method may help people with Long Covid more effectively communicate their experiences to healthcare professionals, family and friends.
• Body mapping may be adapted to offer peer support as part of Long Covid advocacy.

Abstract
The aim of this paper is to reflect on the value of body mapping in supporting patients to communicate their everyday experiences of Long Covid. Body maps are life-sized drawings of bodies and body mapping is used to discuss experiences through guided questions and answering those questions using colours, images and other prompts.

This short paper focuses on the first of four body mapping workshops of this study, which was conducted in June 2023 in London with 4 participants in collaboration with Long Covid Support. Our preliminary results suggest i) body mapping can offer novel insights into patients’ experiences of Long Covid, ii) the method may be effectively applied as a tool for patients to communicate their symptoms and overall experiences to practitioners, friends, and family members, and iii) body mapping may be adapted to offer peer support as part of Long Covid advocacy. This has significant potential application as a resource for healthcare professionals and patient-led peer support and Long Covid advocacy work.

Open access

 

[Andy]

Observer article: ‘We think of the body as a map’: a new approach to deciphering long Covid

"Post-infectious diseases such as long Covid and ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) pose a puzzle to the medical establishment. Patients report debilitating symptoms such as extreme fatigue, shortness of breath or muscle pain, but often show normal results on routine medical checkups. And many sufferers do not look ill, leading some to question the severity of their disease. In the absence of diagnostic tools or an understanding of the pathophysiological processes, many sufferers find it difficult to share their experiences. They lack a verbal language that expresses the true impact of the illness.
Now, researchers from Oxford University are using the technique of “body mapping” to help patients better communicate the physical, cognitive and emotional dimensions of their illness to family, friends and health professionals.

Oxford’s Maaret Jokela-Pansini is interested in how illness feels. “People experience illness in many different ways depending on economic, social and cultural factors such as age, gender or possibilities to access healthcare,” she says. “When we talk about health and disease, we must always take space and time into account.”"

...

"Last year, she teamed up with the Oxford professor Beth Greenhough and they adapted the method for their project Visualising Long Covid. So far, eight workshops have been organised in London and Oxford with the help of the charity Long Covid Support. The participants begin with tracing their bodies on paper. They are then given a list of questions and asked to draw, write or collage their responses on to the map of their body. How did you experience your health before getting long Covid? What impact has it had on everyday life? What kind of support do you get? How has the illness changed the way you view yourself?"

...

"Oonagh Cousins at Long Covid Support says body mapping allowed her to reflect on how illness is experienced in different parts of the body. Cousins participated in one of the first workshops and later joined the project as a research fellow. “You might ask: where is the pain located? Is it in the gut, in the heart, in the arms? What does it feel like? Is it red, is it orange, is it lots of scribbles, is it soft? And what about going to a clinician and being told: ‘It’s all in your head’? Where would you draw the emotion of that experience on your body?” Body mapping invites lots of different ideas and allows you to share them with other participants, she says.

...

"But can this tool actually improve the wellbeing of people with long Covid? Not in the sense that it will heal them, says Jokela-Pansini. But creative research methods such as body mapping allow patients to express themselves differently so that their families, friends and possibly even clinicians can better understand how they feel.

“I think such body maps have utility,” says Carolyn Chew-Graham, a GP in Manchester who was not involved in the research. “Asking patients to record their symptoms can be helpful not only for the individual, but it could also be useful to show the body map to a GP and say: ‘This is where all my symptoms are.’ That then allows them to discuss each body area and symptom and come up with a management plan.”

In addition, body maps may give patients more credibility. “Many people with long Covid struggle with family members not believing them,” says Chew-Graham. “It isn’t just healthcare professionals who can gaslight patients, it’s also partners and family members.” This can be especially true in some ethnic minority groups where fatigue is often stigmatised, as Chew-Graham recently found in a study. The sense of not feeling worthy of care, as well as low awareness of available support, presents barriers in sufferers of long Covid seeking help."

 

[alktipping]

Record your symptoms [you have health anxiety] show your list of symptoms to a gp .they ignore it and tell you they can only discuss one symptom per an appointment .

 

[rvallee]

“Many people with long Covid struggle with family members not believing them,” says Chew-Graham. “It isn’t just healthcare professionals who can gaslight patients, it’s also partners and family members.”

Well that's just disingenuous because obviously other than the odd case here and there, people don't randomly do that without a reason. They do that because medicine doesn't give a damn. It's what gives permission for everyone to be dismissive and awful. Way to deflect what is explicit responsibility for one of the most disgusting and devastating consequences of discriminated chronic illness.

I don't know what goes on in the head of people who make such rationalizations. They can't possibly not understand this. Especially someone like Chew-Graham who has been on the gaslighting side of things, and I have no idea what she thinks she's doing here. Playing both sides is the most generous interpretation I can think of. Perfidy is a natural strategy in psychosomatic ideology.

Even the problem with language is 100% the fault of the medical profession. We can't work it out for them and they refuse to, preferring to obsess over weird useless nonsense like personality traits and whatnot. This could have been worked on rationally and competently for decades but instead we got the current total clusterfuck where everyone but the patients pretends that it's anything but a total clusterfuck.

 

[Ash]

Observer article: ‘We think of the body as a map’: a new approach to deciphering long Covid

"Post-infectious diseases such as long Covid and ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) pose a puzzle to the medical establishment. Patients report debilitating symptoms such as extreme fatigue, shortness of breath or muscle pain, but often show normal results on routine medical checkups. And many sufferers do not look ill, leading some to question the severity of their disease. In the absence of diagnostic tools or an understanding of the pathophysiological processes, many sufferers find it difficult to share their experiences. They lack a verbal language that expresses the true impact of the illness.
Now, researchers from Oxford University are using the technique of “body mapping” to help patients better communicate the physical, cognitive and emotional dimensions of their illness to family, friends and health professionals.

Oxford’s Maaret Jokela-Pansini is interested in how illness feels. “People experience illness in many different ways depending on economic, social and cultural factors such as age, gender or possibilities to access healthcare,” she says. “When we talk about health and disease, we must always take space and time into account.”"

...

"Last year, she teamed up with the Oxford professor Beth Greenhough and they adapted the method for their project Visualising Long Covid. So far, eight workshops have been organised in London and Oxford with the help of the charity Long Covid Support. The participants begin with tracing their bodies on paper. They are then given a list of questions and asked to draw, write or collage their responses on to the map of their body. How did you experience your health before getting long Covid? What impact has it had on everyday life? What kind of support do you get? How has the illness changed the way you view yourself?"

...

"Oonagh Cousins at Long Covid Support says body mapping allowed her to reflect on how illness is experienced in different parts of the body. Cousins participated in one of the first workshops and later joined the project as a research fellow. “You might ask: where is the pain located? Is it in the gut, in the heart, in the arms? What does it feel like? Is it red, is it orange, is it lots of scribbles, is it soft? And what about going to a clinician and being told: ‘It’s all in your head’? Where would you draw the emotion of that experience on your body?” Body mapping invites lots of different ideas and allows you to share them with other participants, she says.

...

"But can this tool actually improve the wellbeing of people with long Covid? Not in the sense that it will heal them, says Jokela-Pansini. But creative research methods such as body mapping allow patients to express themselves differently so that their families, friends and possibly even clinicians can better understand how they feel.

“I think such body maps have utility,” says Carolyn Chew-Graham, a GP in Manchester who was not involved in the research. “Asking patients to record their symptoms can be helpful not only for the individual, but it could also be useful to show the body map to a GP and say: ‘This is where all my symptoms are.’ That then allows them to discuss each body area and symptom and come up with a management plan.”

In addition, body maps may give patients more credibility. “Many people with long Covid struggle with family members not believing them,” says Chew-Graham. “It isn’t just healthcare professionals who can gaslight patients, it’s also partners and family members.” This can be especially true in some ethnic minority groups where fatigue is often stigmatised, as Chew-Graham recently found in a study. The sense of not feeling worthy of care, as well as low awareness of available support, presents barriers in sufferers of long Covid seeking help."

I this.

 

[Denise]

One of the things that seems to be held against PwME and PwLC is that so many different parts of their bodies are affected and affected so profoundly.
Many healthcare professionals look at lengthy lists of someone's symptoms (or diagrams of where they are) and they feel certain that this cannot possibly accurate. And/or they feel they cannot possibly provide any meaningful support or treatment for the person, so they "blow them off".... (Families, etc also do this.)

 

[bicentennial]

.
I have no idea what an emotional symptom is. I find nothing symptomatic about emotions.

I am not sure that emotions can be symptomatic. I was told depression is an absence of emotion. Maybe thats what it means. Or maybe emoting involves an emotion, I might call emoting symptomatic. It depends.

Mostly I find a full range of emotions to be non-pathological. Maybe if lobotomised. or otherwise injured. or in some sort of affectless state. Maybe its a pathological symptom to have a blunted emotion

Emotion, as queried here, is so much less defined than even the biomedical mysteries we plumb. So it will only confuse the whole assay

Also, the emotional impact of being ill, and a nuisance on top, it is not pathological. It is an impact. It is not part of the pathology

So emotion should not be included in an assay of this biological state.

Or is there some evidence that emotion has pyschic control of the body. I gather a blush may signal embarassment, but is that caused by an emotion. It could be caused by an indoctrination with a consequent emotional impact

I think it very unwise to include this whole confusion over emotion in a biomedical map. Why not map emotion in a psychological study, instead, and clarify the matter
.

 

[bicentennial]

.
I think this mapping is a brilliant solution to help locate, or define, some body language. I'd like to adapt it, to elucidate the significant ME/CFS pathology.

So I do want to explore it at this link to it's Visualising Long Covid project

Except I thought it was to help communicate a bewildering set of bodily symptoms. And I cannot answer these oddly headlined questions, graphically, on a body map. So where do they come from:

- How did you experience your health before getting long Covid?
- What impact has it had on everyday life?
- What kind of support do you get?
- How has the illness changed the way you view yourself?"

That is what rang my bell. Or is it the reporter too biased to question bodily symptoms. While attracting the attention given to Long Covid

Yes, its a help to be creative and express things and share the expressing. But that won't necessarily define, articulate and communicate pathological symptoms

"But can this tool actually improve the wellbeing of people with long Covid? Not in the sense that it will heal them"

Oh, wellbeing, yes. Cue the endo-cannabinoid system (which can heal too). But wellbeing is not a diagnostic aid for Long Covid and ME/CFS. Seems these are leading questions from the researcher

"Creative research methods such as body mapping allow patients to express themselves differently so ..... and possibly even clinicians can better understand how they feel"

Looks like a "bait and switch" then. I thought we all started off wanting to communicate the profile of an illness

At least their GP kept their eye on the ball, as locating a symptom:

"...[locating a symptom] allows them to discuss each body area and symptom and come up with a management plan.”

Oh no. Their GP then rushes off-topic to plug their own study on ethnics who won't admit to fatigue. How does a GP miss the universal stigma laid on anyone who gets tired and says so. Usually on terms like "I'm being lazy, so what"

Well there we are.

To their GP its just another daily fatigue. One thats also gaslighted by families and particularly stigmatised by ex-colonialised peoples. Less so by ex-colonisers. And we can't blame it all on the doctors who did accept some blame.

Their GP has a post-script:

"The sense of not feeling worthy of care, as well as low awareness of available support, presents barriers in sufferers of long Covid seeking help"

Not to mention that stuff about poverty and the other barriers to healthcare access. Its just self-abnegating reticence and marginal ignorance is all. Can work on that Get a social prescription to feel worthy and get blaring signposts
.

 

[bicentennial]

.
I guess the exercise was not fully adapted for the purpose. Because I would find using colours obstructive, in the exercise as in its interpretation. It may have been useful in some other exercises, for the purposes of creativity, liberation

Or if a person thinks in colours. Maybe that is a synaesthesia. Why stumble on a colour request. There would need to be a common language of colours. There is none. I would consider adapting it to leave out the emotions and the colouring

I'd also need to know which images particularly helped to express what. The guided questions and prompts might make a good prototype to work on

With all that bothering me, I had a closer look, and then I got very unsure upon this bit quoted by the Guardian article:

"In the absence of diagnostic tools or an understanding of the pathophysiological processes...."

But only because I was reading it as "para-physiological", still thinking what will they come up with next. But I read it wrong. Such is the power of this unadapted suggestion that emotion is a part of the pathology

Ah, it is "Oxford’s Maaret Jokela-Pansini ... interested in how illness feels.

“People experience illness in many different ways depending on economic, social and cultural factors such as age, gender or possibilities to access healthcare ...”

“When we talk about health and disease, we must always take space and time into account.”

Squeak. Squeal. Excuse me

The emotions might vary from person to person. The bodily sensations might vary with resilience. The experience of illness is far more than how it "feels". Illness is not that variable. Though there are many variations of sub-type and outliers. Its a body thing. There is an agenda here and its not simply to help us communicate. But it is establishing some modifiable influence of emotion

I don't think the purpose is to prioritise income support and and access to healthcare. I thnk there is an agenda to suffuse the communications with emotional implication

But then I have a bias too based on many previous observations
.

 

[bicentennial]

.

One of the things that seems to be held against PwME and PwLC is that so many different parts of their bodies are affected and affected so profoundly.

Many healthcare professionals look at lengthy lists of someone's symptoms (or diagrams of where they are) and they feel certain that this cannot possibly accurate.

And/or they feel they cannot possibly provide any meaningful support or treatment for the person, so they "blow them off".... (Families, etc also do this.)

Record your symptoms [you have health anxiety]

show your list of symptoms to a gp

they ignore it and tell you they can only discuss one symptom per an appointment

Ah, but maybe, just maybe, if its graphic at one glance...

... then maybe its not too linear for a rushed GP to follow. They might even slow down, and stop rushing people in and out, and roundabout like all the exits were gridlocked

Also, if they see it all at once it might leap over the hurdle. Then they just might find they CAN say the word "systemic", after all that. Not sure, yet, how that word became verboten

I don't think time is the right excuse for "1 symptom per appt". I think its a frank admission that they can't add 2 and 2. Some deficit in their medical education

But also I hear it is typical of those clinics that all got sold to big business. Cutting costs big-time. Or whats the point? To maximise profits, boundlessly. On government contracts. Which subsidised the massive expansion of a tiny niche market. And might appreciate a body map for every person needing to access a profiteering clinic, in a jiffy

The colouring pens would be nice for the adults in the waiting room. While waiting for the invite to see Dr. Tommy or Dr. Christine, as the case may be. Body maps can expedite all th eNHS plogistics

Phew. I begin to realise its not just me being too bewildered to report a symptom I can't map

Maybe its not just my brain on the blink in a hurtle to jump the gaps. Maybe its the GP who needs a body map to "express themselves". Will this infantilising ever stop? Must we all grow up first or what?

Sadly, those new ME/CFS education modules, they do not sound like a new text book for the re-education of our GP cohort. Not as advisedly ordained. Nor do those new Long Covid GP leaflets endorsed by Long Covid SOS @Yann04. Sounds like this here body map was initially developed, trialled and endorsed by Long Covid Support. With or without the mediation of Clinicians for Post Covid Society aka The British Society of Physiotherapy and Rehabilitation Medicine which brokered all the leaflet contracts

I would very much like to adapt a more pertinent body mapping tool. For the diagram that will medically educate me and my GP. Maybe Long Covid Support had a good look at the final verison and wants to narrow it down. We also await the MEA tool in its final version.

I guess each and every tool still crusted with accretions will be overtaken by events this year

 

[Trish]

I haven't read all the posts on this thread, I'm just responding to the abstract and media article.

I guess people will respond differently to this. I can only speak for myself.

My response is a resounding NO. Thus is not for me.

The idea of being asked to write, draw and colour in on a life sized, or any other sized, body outline on paper gives me the horrors. It says to me that I'm being patronised, my illness is not being taken seriously, I'm imagining my symptoms so I can only make them metaphorically 'real' by drawing and colouring in like infant school.

I also think my GP would think I'm going senile if I presented them with a picture with words and colours scrawled all over it.

I'll crawl back in my box now and leave this thread to people who find it helpful. I'm happy for you if this helps you. It's just not for me.

 

[Lou B Lou]

This is Not for me either. My brain just melts when trying to work out what the coloured squiggles mean, and I am quite a visual person. I can't see my family making sense of it either. Or my GPs.

I do think it's a distraction from the Vital Need for Medical Education for Drs and other Health Care staff. And what happened to the NICE Guideline?

As for the Observer article, just thank god the Comments are not open on that article.

 

[Turtle]

Drawing a picture because a GP does not understand words? Maybe educating the GP would help.

 

[bicentennial]

.
I'd very much like a grown-up MEDICAL DIAGRAM to aid me and my GP as we both have problems profiling the problem. I found a medical body-map to develop for translating to a GP, maybe

It comes from the translational field so maybe its as adept as one could wish for a start-up
- if given permission

From the Journal of Translational Medicine volume 23, Article number: 68 (2025)

Here is the link to a medical diagram from the multi-omics world



And here is the thread it came from:

Abstract.... ...collaborative
data-sharing
initiatives
..in the endeavour
to unravel
.......the biological
intricacies
of ME/CFS

Machine learning and multi-omics in precision medicine for ME/CFS

Katherine Huang,
Brett A. Lidbury,
Natalie Thomas,
Paul R. Gooley &
Christopher W. Armstrong

https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-024-05915-z

I am quite a visual person

... Vital Need for medical education for Drs and other Health Care staff

And what happened to the NICE Guideline

Drawing a picture because a GP does not understand words?

Maybe educating the GP would help.

.

 

[Utsikt]

My response is a resounding NO. Thus is not for me.

The idea of being asked to write, draw and colour in on a life sized, or any other sized, body outline on paper gives me the horrors. It says to me that I'm being patronised, my illness is not being taken seriously, I'm imagining my symptoms so I can only make them metaphorically 'real' by drawing and colouring in like infant school.

This. It should not be required in the first place.

That being said, I can understand why some patients would prefer to work this way.

 

[Maat]

‘We think of the body as a map’: a new approach to deciphering long Covid | Health | The Guardian includes video of long covid patient (community nurse and local councillor)


My one substantial cognitive thing today was to read this and watch the video attached to the article. The gentleman looks pretty ill to me. My conclusion, nope not for me, thank you.

Body maps are not new in the UK, and have been around for decades in the care system. Although they are usually pre-printed on A4 size paper.

They are used by professional carers as a safeguarding measure to record areas of injury such as skin slip, or bruising, swelling, bed sores, or signs of infection on the body.

In fact, using a pen to draw a circle actually on the physical body is often a way to see if an area of obvious infection is increasing or decreasing. They’re probably used in hospitals and care homes for example, when patients fall out of bed. They’re usually evidenciary.

By the way, the medical care in prisons is usually mental health based, and I notice that that’s the background experience the lead author brought the idea from.

 

[Maat]

From the study, published July 2024:

“The aim of this paper is to outline how body mapping may help people with Long Covid to communicate the impacts of the illness. Our preliminary findings are that: (i) body mapping as a research method can offer novel insights into patients’ experiences of Long Covid;

Same authors published this in May 2024. [block text broken up for ease of reading]

Scopus preview - Scopus - Document details - Creating safety amidst chronic contamination: A mixed-method analysis of residents’ experiences in a Southern Italian steel town Jokela-Pansini, M., Ippolito, R., Greenhough, B.,Lora-Wainwright, A May 2024

“Our findings propose first that residents experience and understand environmental risk mostly through air pollution, but often situate risks outside of their own neighbourhood and inscribe different meanings to such risk.

Second, residents mitigate environmental risk through practices aimed at creating safety, such as moving away from the industrial area or using everyday practices and reflecting on their responsibility for actions.

Third, we argue that residents create safety through an attachment and entitlement to place and emotional detachment from pollution and institutional failures. Finally, in line with residents’ concerns about safety and how to secure it, this study embraces a shift in its analytical focus from risk to the quest for safety. By doing so, it provides novel insights into environmental risk perception in industrially polluted areas and reveals the often-contradictory sentiments and practices that such areas invoke in residents”

 

[Maat]

But the article also produced this from the GP from Manchester quoted in the article.

People from ethnic minorities seeking help for long COVID: a qualitative study | British Journal of General Practice 2024 [block text broken up for ease of reading]

“People from these backgrounds are less likely to present to primary health care, as indicated by clinical coding of long COVID,20 less likely to gain access to long-COVID clinics,21,22 and are underrepresented in long-COVID research.8,23 In general, people from ethnic minorities have reported less satisfaction with primary health care because of factors including: lack of care demonstrated by practitioners, a lack of trust in professionals, and being less involved in decision making.24

People living with long COVID experience stigma,12,25 and are devalued or discredited by society because of their condition.26 Stigma is not an uncommon experience for people living with health conditions that have a history of sensationalism in the media, such as mental health difficulties or HIV.27,28 People may experience health-related stigma in different ways, such as through social exclusion, rejection, blame, and negative attitudes associated with their health condition.29

Stigma can be further impacted by intersections with pre-existing inequalities, such as a person’s gender, ethnicity, or sexuality.28,30

The damaging impact of stigma on healthcare access and experiences, as well as health outcomes, is well documented.27,28,31,32 Stigma experiences may be wide ranging for people living with long COVID from ethnic minority backgrounds; for example, there may be stigma attached to having COVID-19 from others in various community settings31 and patients may experience discrimination in health care (for example, related to racism).33

All of this may contribute to avoidance of the ‘long-COVID’ label, and disengagement with health care and/or inadequate healthcare experiences, thereby potentially widening health inequalities”.

So that's useful.

 

[Maat]

And lastly, there’s this from 2017 The Body Map Theory | Mind the Body: An Exploration of Bodily Self-Awareness | Oxford Academic

How do bodily experiences get a rich spatial content on the basis of the limited information carried by bodily senses? This chapter argues that one needs a map of the body, which represents its enduring properties (i.e. configuration and dimensions). This representation can be decoupled from the biological body leading the subject to experience sensations not only in phantom limbs but also in tools that bear little visual resemblance with the body. Does it entail that there is almost no limit to the malleability of the body map? Or that bodily sensations can be felt even beyond the apparent boundaries of the body, in peripersonal space, and possibly even farther? This chapter examines a series of cases that may cast doubt on the role of the body map for the localization of bodily sensations.

 

[Utsikt]

By the way, the medical care in prisons is usually mental health based

That’s grim.