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'Betwixt and between' Liminality in recovery stories from people with Myalgic Encephalitis

Cheesus

Senior Member
Messages
1,292
Location
UK
Abstract
This paper explores experiences of sixteen people claiming to have recovered from Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS) using the concept of liminality. Liminality describes the status of those falling between socially recognised and medically sanctioned categories, and illuminates both the experience of illness and the process of recovery from ME/CFS. The liminality experienced during illness was akin to that described by Turner (1969) with a degree of communitas among sufferers. As recovery progressed, participants stressed the percentage to which they had improved, and compared themselves with peers and themselves prior to the illness. Recovery did not mean transition into a post liminal phase, but involved a new liminality, characterised by straddling boundaries between illness and wellness. Participants continued strategies such as rest, pacing and meditation. This second liminal state included difficulty in communicating the experience convincingly, and estrangement from the ME/CFS community. Thus, recoverees moved from the liminality of illness to a second, and less legible state of sustained liminality in recovery, described as having one foot in the ill world, one foot in the well world. This suggests that more needs to be understood about the recovery experience to assist those making the transition toward wellness.

https://v00dor00001d.dmu.ac.uk/handle/2086/12721

Chrome gave me a warning that the website might be unsafe when visiting it. I don't think you have anything to worry about, it is just a freaky URL.
 
Messages
2,158
I don't understand what the abstract is talking about and don't feel encouraged by it to try the web link.

Can anyone clarify where it was published and who by, and what on earth it's talking about?
 

Hajnalka

Senior Member
Messages
910
Location
Germany
Couldn´t open the full document (too lazy to create an account) and it´s not so easy to sense psychoquackery in a foreign language, so I might be way off. :)

But I think the paper might be actually interesting. Few ME-patients recover fully, the lucky ones, who feel better/go in remission are mostly still stuck in an area in the middle: they are not bed- or housebound anymore and are able to work, but they´re not as healthy as before, can´t do sports etc.

In comparison to being a cancer survivor, nobody in your new "healthy" life can relate to what you´ve been through. If you tell your new collegues and friends you spent the last 10 years in bed with ME, they think you´re insane. But you might feel too healthy to hang out in ME-forums all the time. I can relate to that you might feel like you don´t fully belong in either of the two worlds and are stuck in the middle (pure fantasy, didnt´t have the luxury, yet).

In short: I can appreciate that it might be challenging to return to the real world partly recovered after being in ME-hell. But of course I would chose these challenges everyday above my current state of being bedbound. ;)
 

Murph

:)
Messages
1,799
Looks interesting to me. It's qualitative epidemiology - a simple and small study of patients who "recover." Saying do they really recover? Where do you end up if you're "mostly" recovered? How do you identify? As sick or well?

Not going to solve the disease but still interesting and the kind of research any proper disease should have going on. Patient experiences matter!

It seems to note that the in-between state of being mostly recovered is a bit similar to the in-between state of having a disease that the medical world doesn't fully recognise.

The word "liminality" is a bad choice though. Death to jargon!
 

Forbin

Senior Member
Messages
966
There certainly is one liminal state that ME/CFS has a lot in common with....

617475_the_twilight_zonesaucer_of_loneliness.jpg
 

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
In terms of a personal response I hadn't thought of my experience this way but it does resonate. I got to 95%well but I still thought of myself as having ME (this is a level at which you can probably interpret either way). In that sense I was still looking towards being fully well, so now looking back I wish I'd appreciated the almost-health more.

What is probably different about me from these participants is I didn't get involved in the ME community in the initial phase. Groups seemed depressing, this forum didn't exist and neither did Twitter. I didn't then have the feeling of not fitting in anymore as I was doing better, but I did have the feeling of not being the same as well people.
 

Dolphin

Senior Member
Messages
17,567
I found this interesting enough. Like the authors say, the issue hasn't really been explored much.

There wasn't very much psychobabble or similar which was good.

I didn't have too many major complaints about it.

I disliked the use of the term "illness behaviour" a few times with regards to people resting, meditating, doing less, et cetera. They made it sound like the patients might be choosing for no reason/out of (bad?) habit to do these things. A more neutral term like "illness management" might be better e.g.
In addition, in characterising what they meant by recovery, both full and partial recoverees, reported a need to attend to possible symptoms of fatigue, and undertake some illness behaviour in order to maintain a longer term recovery.

For many it was necessary to engage in some form of illness behaviour in order to sustain a longer term recovery.

In addition, in characterising what they meant by recovery, both full and partial recoverees, reported a need to attend to possible symptoms of fatigue, and undertake some illness behaviour in order to maintain a longer term recovery.

Even participants identifying themselves as fully recovered had not undergone a clear cut rite de passage into a reaggregated state and retained some residues of their period of liminality. Instead, they had to be continually poised to reincorporate illness behaviour into their lives in order to maintain their recovered identity.

They only give one side of the story really regarding patients going to ME/CFS forums and reporting being recovered. They don't mention that what somebody ascribes to have caused their recovery may not be the reason they improved. They may simply have been lucky, diagnosed early, more mildly affected, et cetera.
Also all the people saying they are recovered in this paper didn't necessarily sound like they were fully recovered so again that could be worthy of criticism depending on the content of their posts on ME/CFS forums.
 
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Dolphin

Senior Member
Messages
17,567
I don't understand what the abstract is talking about and don't feel encouraged by it to try the web link.

Can anyone clarify where it was published and who by, and what on earth it's talking about?
Source: Sociology of Health & Illness
Preprint
Date: February 27, 2017
URL: http://onlinelibrary.wiley.com/doi/10.1111/1467-9566.12546/abstract


'Betwixt and between'; liminality in recovery stories from people with myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS)
---------------------------------------------------------------------
Brian Brown(*), Kate Huszar, Rosemary Chapman
- School of Applied Social Sciences, De Montfort University, UK.
* Address for correspondence: Brian Brown, School of Applied Social
Sciences, De Montfort University, Leicester LE1 9BH.
E-mail: brown@brown.uk.com
 

Dolphin

Senior Member
Messages
17,567
If you are not working or studying full-time, you may not be aware that if you tried to work or study full-time you might have a lot of problems.

So I tend to be sceptical of people claiming to be fully recovered unless they are working or studying full-time or engaging in a lot of high intensity activity.

This person doesn't sound like they are working full-time (and may not be working at all) so I'm not convinced they are necessarily recovered:
So we can actually lead a fairly normal life now, I regard it as normal anyway for my age [laughter], in fact a lot of my peers say ‘how do you do it?’, y’ know, ‘I can’t keep up with you and I haven’t got ME’, y’ know, [laughter]. Swimming Friday morning, and dancing Thursday evening, and crafts Monday morning and something else Tuesday and so on and so forth. (Dina)
 

Dolphin

Senior Member
Messages
17,567
Thus, recoverees moved from the liminality of illness to a second, and less legible state of sustained liminality in recovery, described as having one foot in the ill world, one foot in the well world. This suggests that more needs to be understood about the recovery experience to assist those making the transition toward wellness.
The 2nd sentence isn't really explored in the full text. I don't find it very convincing that this study tells us what to do to become well but it might but it might help learn how people who were high functioning can adapt to their state where they don't fit well into the normal ME/CFS community. I think that having one foot in both camps is probably a reasonable way of continuing to exist rather than treating yourself as fully recovered and that ME/CFS is no longer relevant in your life.
 
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Dolphin

Senior Member
Messages
17,567
Presenting oneself as a pro-active agent, urgently seeking recovery was consistent throughout the data, as was being willing to adapt one’s lifestyle to eradicate anything that may be regarded as contributing to the illness. This pro-active stance also counters the potential association of ME/CFS with depression, and deflected any implication that they were somehow complicit with the illness or that it could be perpetuated by apathy.

Dina gauges her incremental progress towards recovery in a way which also helps to portray her as continually striving to improve her condition. This was a common feature in the data, which again serves to dispel any insinuation that the illness is caused by apathy or depression.