“It’s not all nice and fun”: Narrating contested illness on YouTube and Instagram, 2021, Groenevelt

[Dolphin]

https://journals.sagepub.com/doi/full/10.1177/13634593211017187


Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine

“It’s not all nice and fun”: Narrating contested illness on YouTube and Instagram


Irene Groenevelt
First Published May 25, 2021 Research Article
https://doi.org/10.1177/13634593211017187

Abstract
This empirical study draws on insights from narrative theory to tease out how women with a contested illness narrate their experiences on social media. Based on 13 months of online observations between 2017 and 2019, I analyse how a sample of eight highly active Dutch female social media users share their illness on YouTube and Instagram. In addition, I interviewed five of them. Through their online performances, the women in this study illustrate their investment in self-care practices, whilst simultaneously laying bare the limits of these practices in ensuring permanent well-being. Central to transmitting their experiences is the performance of balanced positivity; meaning that illness is dealt with in a predominantly ‘positive’ way, as well as through the occasional display of (moments of) hardship. I identify three main aspects of this performance of balanced positivity, namely: (1) appearances, (2) mindset, and (3) presence. The practice of balanced positivity is congruent with the concept of legitimacy narratives, because it allows women with a contested illness to show their efforts to cope with their condition as well as the myriad challenges that remain despite these efforts.

Keywords balanced positivity, contested illness, moral legitimacy, online ethnography, self-care practices, social media

 

[Invisible Woman]

I understand the need to be positive about the way certain things are. I do.

The world isn't entirely positive nor negative and balance in all things etc, etc and so forth.

However, sometimes I feel that I & others with chronic health problems feel under some sort of obligation to demonstrate that I have a positive attitude, that those who don't are somehow not coping well and that seems to bring with it some sort of moral judgement.

I happen to have ME. I also happen to have not especially good eye sight. I have limited control over either. All I can do is pace myself or, in the case of eyesight, wear my glasses to avoid excruciating headaches.

Lets focus on my eyesight (pardon). It was the bane of my youth. I played sport and it caused difficulties because in those days the lenses were a)expensive, b)heavy, c)made of glass. So I couldn't wear them when playing matches. Did I have to show a positive attitude? No. Did I have to make a show of the fact I was making the best of it? No.

So why do I sometimes feel that society expects me to make a show of how much I am helping myself with my coping and positive attitude? It won't cure my ME.

Sometimes positivity makes me feel really negative and I want to just stick to fingers up at society, quite frankly.

 

[rvallee]

Of all the things to focus on with this topic, this is a bizarre one. This obsession with the trivial aspects of illness is absurd considering all the important ones are completely ignored. It serves absolutely no purpose.

 

[Hutan]

The present study argues that balanced positivity is central to the online narratives of the women in this study. That is, they make use of YouTube and Instagram to illustrate their investment in self-care practices, while using these same media to draw attention to the limits of these self-care practices in ensuring wellbeing. These online narrations can be interpreted as legitimacy narrativesthrough which social media users seek to affirm their moral legitimacy (Japp and Japp, 2005), and are interlinked with the present-day requirement of self-care in health.

From the bit of the paper I read, the author isn't saying we have to be positive. It's mostly just that people talking about their chronic illnesses on YouTube try to make themselves look nice so they aren't judged harshly. I'd argue that that is true for most people regardless of whether they have a chronic illness, and certainly most women.

While the paper might be stating an obvious truth, and while we might greatly prefer research that seeks to find the cause of our illness, the author presents some interesting ideas (again, that's based on the small bit of the paper I have read) and seems to be on the side of those with chronic illness.

Typical narratives are characterized by “a discernable plot that has a beginning, middle and an end” (McMahon et al., 2012: 1359). In The wounded storyteller, Frank (1995) describes how the incorporation of a linear temporal sequence is a central element in two types of narratives, which he calls restitution and quest. Whereas restitution narratives express the drive to restore former health by getting proper care, quest narratives are all about the belief that valuable insights can be gained from the experience of being ill. Both types of narratives have a linear temporal structure: they start with the naming of the condition from which the protagonist is suffering, and work toward the restitution of health or the reconfiguration of identity. Because these narrative types are dominant in contemporary Western society, Wasson (2018) provocatively speaks of a “hierarchy of narratives” in which the incorporation of certain types of temporal structure has come to be understood as “indispensable to a bearable human life” (p. 107). Yet compared to illnesses that have a firmly established biomedical status, contested illnesses do not easily allow for the telling of such preferred narratives because, in most cases, there is no clearly demarcated beginning or ending of the suffering. This is why Nettleton (2006) argues that stories by people who lack a biomedical diagnosis can best be described as chaos narratives: Frank’s third and final typology. These stories are “difficult to ‘hear’” because they lack a linear structure and plot, and might even lead to the denial of the existence of the illness by others (Nettleton, 2006: 1173).

In various studies, the difficulties experienced in narrating contested illness have been connected to the contemporary imperative to health, conceptualized as the neoliberal understanding that health and wellbeing are individual accomplishments that can, and should, be safeguarded by appropriating and maintaining a healthy lifestyle (see Lupton, 1995). Often these studies refer to Crawford’s (1980) concept of healthism, which he describes as the tendency to situate “the problem of health and disease at the level of the individual” and to formulate solutions to ill health correspondingly.

 

[Invisible Woman]

From the bit of the paper I read, the author isn't saying we have to be positive.

It's society's & our own expectations as people with chronic health conditions that frustrate me. It can often be self defeating.

On more than one occasion I witnessed relatives of my mine who had been horribly unwell downplaying just how badly they were suffering to the doctor. This despite the fact I was putting myself out quite considerably to help care for them. Their understating & being unduly positive gave a very misleading picture that affected their medical care and made life much harder for them and me.

The idea of a person taking responsibility for health and wellbeing and being seen to do so is all very well when you're starting from the perspective of a healthy individual who can choose to optimise their chances of staying that way.

Unfortunately, sooner or later, most will get sick at some point, or age, and eventually die. It is very easy for society (including the chronically ill & especially those with contested illnesses) to place the responsibility of becoming sick on those who have become ill through no fault of their own. The assumption of being responsible for one's poor health and the inherent implication that significant improvement is usually within the ill person's control can quickly become toxic for the chronically ill person.

I'm not saying we shouldn't manage our condition to the best of our ability, mind. Most of us will do so automatically, either because we need to be able to look after ourselves or because we want to minimise the burden of care on our loved ones.

In an age where we are increasingly aware of recognising, accepting and learning to understand differences - in sexuality,sexual identity, race, culture and so forth is it not time to teach people to understand an even more common difference that of chronic ill health?

Would we be better served as a society if we stopped looking at health purely from the perspective of the healthy & abled but learned to see it from the perspective of those who impaired health. Perhaps that could lead to a greater integration & inclusion between people with disabilities or impairments, the chronically ill and those who have the luxury of health?

Would it teach more people to treasure and look after their good health and make society more supportive for those who find themselves adjusting to a life with a chronic illness in such a way that losses in their lives can be minimised (financial, relationships etc)?

 

[Arnie Pye]

I may be going off at a tangent slightly...

Some societies and cultures don't recognise the concept of depression at all, and certainly don't have a word for the problem.

Not a very good link, sorry :

Title : A Look at Depression Around the World

Subtitle : How depression is viewed in different countries can teach us a lot about the disease and its treatment.

Link : https://health.usnews.com/health-ca...7-07-07/a-look-at-depression-around-the-world

Date : 7th July 2017

What annoys me about this article is that it doesn't make a single mention of anyone being interested in finding the cause of this global depression, and nor does anyone attempt to treat it other than with anti-depressants, exercise and CBT. See this paragraph, which explicitly mentions the NHS - and comes out with some nonsense in the process :

Treatment is different as well, he says. In many countries, people go to a physician who gives them a physical treatment. Medication most likely is an anti-anxiety drug, not an antidepressant. “The National Health Service in England is doing a better job at treating depression, because they made a very interesting decision no longer to prescribe antidepressants at all, except in the most extreme cases, because they are not much more effective than placebo,” he says. “They decided they would rather get people exercising and learning the basics of cognitive therapy.”

 

[Invisible Woman]

I may be going off at a tangent slightly...

Some societies and cultures don't recognise the concept of depression at all, and certainly don't have a word for the problem.

We often see papers here looking at depression as at least a comorbidity with chronic ill health. It seems the NHS and government/healthcare services elsewhere are prepared to spend significant sums of money on address supposed mental health needs of those who are chronically ill.

However, as we discussed elsewhere on the forum, in all likelihood they would get much better value for money if they invested in better support for the chronically ill. Support in terms of adjustment to becoming ill, tools and services needed to manage the illnesses as effectively as possible and so forth. Especially as prevention is supposedly better than cure then why not take this approach to mental health too.

In addition to the adjustment and isolation faced by many chronically ill, even those with chronic health problems who can still participate fully in society face a more subtle type of discrimination. Something that has struck me during the pandemic is the number of people calling for the elderly and clinically vulnerable to be isolated while they carry on with their lives. The precautions seen as an unnecessary punishment on them. The flip side being it's okay to "punish" the sick and elderly, even though these groups are probably more likely to take more precautions.

There's also the assumption that the chronically ill are "other" and don't impinge on the lives of the healthy. Yet many of the chronically ill hold down jobs. The person that some people would cheerfully have isolate indefinitely might be someone they rely on - their boss, doctor, child's teacher, parents carer, bus driver and so forth.

This "othering" or idea that one could and maybe should separate those out with poor health ignores the contributions that those with poor health make to society & contribute to the economy. I feel this is inherent in our society & most people are unaware of it. Then when their time comes and they need and seek support to find it's not available and they're considered somehow not worthy of it it a massive shock and adds an unnecessary mental health burden to the identity crisis faced when a person becomes chronically ill.