What is it like to live with medically unexplained physical symptoms? A qualitative meta-summary, 2021, Polakovská & Řiháček

Dolphin

Dolphin

Senior Member (Voting Rights)
This looks sympathetic, though I haven't read it through.

https://www.tandfonline.com/doi/full/10.1080/08870446.2021.1901900


Psychology & Health. 2021 Apr 19;1-17.
doi: 10.1080/08870446.2021.1901900. Online ahead of print.
What is it like to live with medically unexplained physical symptoms? A qualitative meta-summary
Lucia Polakovská 1, Tomáš Řiháček 1
Affiliations
Abstract


Medically unexplained physical symptoms (MUPS) are a frequent phenomenon. Understanding adults and adolescents' lived experience with MUPS is essential for providing adequate care, yet a rigorous synthesis of existing studies is missing.

Objective: This study aimed to summarize findings from primary qualitative studies focused on adults' and adolescents' experience of living with MUPS.

Design: Qualitative studies were searched in the PsycINFO, PsycARTICLES, and Medline databases and manually. A total of 23 resources met the inclusion criteria and were subjected to a qualitative meta-summary.

Results: Eight themes were found across the set of primary studies, namely, the need to feel understood, struggling with isolation, 'sense of self' in strain, facing uncertainty, searching for explanations, ambivalence about diagnosis, disappointed by healthcare, and active coping.

Conclusion: The eight themes represent the core struggles adults' and adolescents' with MUPS face in their lives, psychologically and socially. Although these themes appear to be universal, the analysis also revealed considerable variability of experience in terms of expectations from healthcare professionals, attitude towards formal diagnoses, ability to cope with the illness, or potential to transform the illness experience into personal growth. Addressing this diversity of needs represents a significant challenge for the healthcare system.

Keywords: Medically unexplained physical symptoms; meta-summary; patient experience.
 
It's pretty well written, with a decent identification of issues e.g.
Need to feel understood: nobody knows how I feel inside;
Struggling with isolation: I need other people's support;
‘Sense of self’ in strain: the illness has changed me as a person
Facing uncertainty: my life has become more unpredictable;
Searching for explanations: I need to understand the symptoms;
Ambivalence about diagnosis: it can reassure it can stigmatise;
Disappointed by healthcare: I lost my faith in medicine;
Active coping: I strive to take life into my hands​

The authors seem to be coming from a BPS perspective, as might be expected from researchers from a Department of Psychology. I thought it was interesting because it is more neutral and nuanced than most BPS papers on MUS.

Patients in the primary studies often expressed a fear of being labelled as “somatizers” or being diagnosed with a mental disorder. Similar observations were reported in studies on CFS (Drachler et al., 2009) or PNES (Rawlings & Reuber, 2016), although the CFS diagnosis is probably better accepted due to its lack of psychiatric connotations. Thus, in the case of MUPS, a medical diagnosis only partially serves the purposes of socially validating one’s subjective suffering and legitimizing the sick role.
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The researchers are from Masaryk University, Brno, Czech Republic, with Polakovska being a PhD candidate.
 
What is it like to live with medically unexplained physical symptoms?
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Excruciatingly painful because, being "medically unexplained", doctors refuse to prescribe pain relief that actually helps. After all, people with MUS are just drug seekers, attention-seekers, and malingerers. Aren't they?

I've actually read that patients who tell doctors that paracetamol doesn't help are automatically labelled as drug-seekers because it (allegedly) works for everyone. Doesn't it? They can't be wrong can they?

Edit : Fixed my dodgy quoting at about the fifth attempt.
 
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Living with medically explained symptoms sucks. Living with medically neglected symptoms sucks even worse.

I hate how people can just pretend that medical science is 1) done, 2) complete and 3) infallible. It is neither, as assumptions go this one is simply disqualifying. There's lots of explaining left to do. Honestly MUS is basically a damn placebo for physicians. One that doesn't even work because 1) the problem is still there and 2) that's it, the problem is literally still there and you haven't done a damn thing about it.
 
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