Rebuilding a tolerable life: narratives of women recovered from fibromyalgia, 2020, Eik et al

[Andy]

Introduction: Fibromyalgia syndrome (FMS) is a chronic musculoskeletal pain and fatigue condition. Despite extensive research, there is currently no known therapy leading to a cure for FMS. Although studies have reported that some patients can regain their health, little is known about their personal process of becoming well.

Objevtive: This study aimed to explore women’s narratives about the process of recovering from FMS.

Methods: The empirical material consists of qualitative interviews of eight Norwegian women who all have previously had, but do not have FMS any more. Inspired by a narrative approach we analyzed their experiences of becoming better with a focus on recovery as a meaning-making process.

Results: The findings revealed a recovery process consisting of two intertwined narratives that are mutually nurturing each other. The first narrative telling moments of prompting changes refers to events during the recovery process where women understood themselves and their suffering in new ways and thereby enabled them to act in new ways or take further action. The second narrative a mundane process of rebuilding a tolerable daily life refers to a lasting, mundane everyday process of exploration how they initially should act to avoid becoming worse and, later, to promote improvement.

Conclusion: Our findings show how the women explain their recovery in terms of overcoming fear of movement, making sense of their symptoms and becoming more active in everyday life. The close analysis reveals a recovery narrative portraying a complex and ambiguous process consisting of small dramas about the efforts trying to rebuild a meaningful life.

Paywall, https://www.tandfonline.com/doi/full/10.1080/09593985.2020.1830454
Sci hub, unable to access

 

[Trish]

Having only read the abstract, I have no idea what these people's stories include, but I can't help being suspicious about the framing of the story in the abstract that implies FM is all about fear of exercise.

Maybe, just maybe, at least in some recovery stories, the key is that the person was naturally recovering, and was therefore enabled by improving health, and lessening pain, to become more active. Maybe, just maybe, in some cases they have been taught by therapists to attribute their improvement to their own efforts.

And maybe framing it in this way causes harm, as those unlucky enough not to have a natural recovery feel, and are, blamed for not trying hard enough to get better.

I can't help thinking of my own 6 months very debilitating ME-like illness following glandular fever 43 years ago, before the psych narrative was invented and rehabilitation became the buzz word instead of the old fashioned convalescence. I rested, and rested, and rested some more until my body recovered and I got up and got on with my life. No therapy, no blame, no need for GET to get me moving again.

 

[Snowdrop]

I find narratives meaningful. Stories are IMO very powerful ways of sharing a POV.

But they aren't science. What they are is generally fiction. Exaggerations for dramatic effect to deliver the most emotional impact.

Of course for every person out there, there is the real story of their life. Generally not as powerfully dramatic as fiction. And the problem here is that people when faced with adversity want a story that will make sense of things that often don't have any obvious sense to them and they want the story to reveal the struggle they feel in coping and the efforts it takes for them to function which are not at all obvious to others.

Enter the behavioural psychologist. Manipulative to the point of mastery. Tell the ill person what they want to hear (attentive listening then validation of suffering), frame the problem as one that they (psych) have the keys for the solution ( fear of exercise / behavioural modification) and inform the ill person that it is within their power to 'overcome' (a powerful word) and 'win' making it more an epic gladiator struggle where they gain validation through hard work. Getting validation from someone especially when previously experiencing the opposite is a very powerful human motivator.

Validation through hard work. I've heard that concept before in another rather unpleasant (evil) context.

 

[rvallee]

Gobbledygook

 

[shak8]

Dr. Robert Bennett, rheumatologist at Oregon Health Science Center, and a clinician with over 5000 patients and a researcher who discovered low growth hormone levels in fibro patients said (in the 1990s):

one third of patients get worse, one-third of patients get better, one-third of patients stay the same.

To write of "recovery" in fibromyalgia means they were not properly diagnosed.

 

[Trish]

To write of "recovery" in fibromyalgia means they were not properly diagnosed.

Or they have redefined 'recovery' to mean improved.

 

[Arnie Pye]

Dr. Robert Bennett, rheumatologist at Oregon Health Science Center, and a clinician with over 5000 patients and a researcher who discovered low growth levels in fibro patients said (in the 1990s):

[My emphasis in quote]

Do you mean "low growth hormone levels"?

 

[rvallee]

Or they have redefined 'recovery' to mean improved.

"Never heard from them again" seems to be the criterion for = "recovered".

Then of course the same people are puzzled at all that "doctor shopping" and don't see the link or imagine that it could concern them, showing that sometimes ignorance truly is bliss, as long as you don't care much about professional responsibility anyway.

 

[alktipping]

if we had a system similar to the one in education that weeded out piss poor teachers/ schools for the medical profession to remove the licences of those who are simply to lazy or stupid to keep up with the actual science rather than bullshit that only exists to save costs .

 

[shak8]

[My emphasis in quote]

Do you mean "low growth hormone levels"?

Whoops, yes.

 

[shak8]

Or they have redefined 'recovery' to mean improved.

Perhaps, but they do say recovered and ipso facto that is extremely rare.

I'm being very generous here that there's a problem with low to no-cost translation services from Norwegian to English.

As in: "The close analysis reveals a recovery narrative portraying a complex and ambiguous process consisting of small dramas (my bolding) about the efforts trying to rebuild a meaningful life."

Oh, yes, it's about women, so it's their small dramas--lost in translation or denigration of females?

One last thing: The main researcher is a physical therapist, there's an RN, a psychologist and another PT.

Post edit note: According to the American College of Rheumatology: there is no cure for fibromyalgia. Good night.