Illness invalidation and psychological distress in adults with chronic physical health symptoms 2024 Woldhuis and Gandy

[Andy]

Highlights

• Illness invalidation occurs for people managing a range of chronic health symptoms.
• Psychological distress was associated with illness invalidation from three sources.
• Illness invalidation from family members was most strongly associated with distress.
• Multimorbidity and longer symptom duration indicated higher illness invalidation.
• Adults with unconfirmed diagnoses felt more misunderstood by medical professionals.

Abstract

Objectives
Illness invalidation is a term used to describe when someone's illness experience is delegitimised by another person in the social environment. This study investigated whether illness invalidation was associated with psychological distress in Australian adults managing symptoms of chronic physical health conditions (CPHCs), and whether illness factors were related to levels of illness invalidation experienced.

Methods
In 2022, a large cross-sectional online survey was conducted on adults managing symptoms of CPHCs (e.g., chronic pain, fatigue). Participants self-reported demographic and illness information, health-related self-efficacy, psychological distress, and illness invalidation using validated scales.

Results
The sample data revealed (N = 1610) that illness invalidation was experienced across many symptom categories. Hierarchical regressions indicated that discounting from family members, medical professionals, and the spouse/partner, as well as lack of understanding from family members, was significantly and uniquely associated with psychological distress while controlling for adjustment-related factors. Adults with multiple CPHCs, longer symptom durations and suspected/unconfirmed CPHC diagnoses experienced higher illness invalidation.

Conclusions
Illness invalidation, particularly discounting, is common in people managing symptoms of CPHCs and appears to be uniquely associated with psychological distress. Future research should attend to illness invalidation in adjustment and reducing invalidating experiences for people with CPHCs.

Open access, https://www.sciencedirect.com/science/article/pii/S0163834324002068

 

[Andy]

"The most frequently self-reported CPHCs were chronic fatigue syndrome (ME/CFS) (n = 376), fibromyalgia (n = 273), Ehlers-Danlos syndrome (ESD)/ Hypermobility Spectrum Disorder (HSD) (n = 248), Postural Orthostatic Tachycardia Syndrome (POTS), (n = 228) Irritable Bowel Syndrome (IBS) (n = 225), endometriosis (n = 225), and arthritic conditions (e.g., rheumatoid, psoriatic, osteo and ankylosing spondylitis) (n = 220)."

 

[Haveyoutriedyoga]

Theoretical models like the Working Model of Adjustment to Chronic Illness by Moss-Morris [6] posit that challenges managing a CPHC are shaped by factors related to a person's personal background (e.g., personality, gender), illness (e.g., symptoms, severity) and environment (e.g., socioeconomic status (SES), social support). The model stresses the importance of cognitive-behavioural factors, including health-related self-efficacy (i.e., belief in ability to manage one's CPHC) [[7], [8], [9]] as common targets for interventions aimed at improving adjustment and alleviating psychological distress associated with CPHCs [10].

When contextualised within the Working Model of Adjustment, illness invalidation may be considered a perceived stressor in one's social environment that impedes psychological adjustment to one's CPHC related symptoms. This draws similarities with the cognitive-behavioural model of borderline personality disorder and dialectical behaviour therapy, which posits that an invalidating environment in childhood is one of the core factors that leads to the development of disordered emotional regulation in adulthood [11].

So being invalidated when physically ill causes BPD and we should treat it...how, I wonder.

Thus far, training for medical professionals in validating communication has emphasised enhancing empathy and shared symptom understanding [35,36], yet our results suggest there is a potential for further improvement by integrating strategies aimed at mitigating discounting experiences, for example.

investigating mediating relationships with other factors like health-related self-efficacy may be worthwhile.

The best bit:

a recent review indicated that people managing functional somatic syndromes (e.g., chronic-fatigue syndrome, fibromyalgia)

 

[Haveyoutriedyoga]

"integrating strategies aimed at mitigating discounting experiences" sounds like they want to teach people to cope better with the invalidation through positive affirmations. Not sure what the solution for actually getting the validation that is needed in order to access treatment or receive support, or the fall-out for when you go back and are still convinced you are right but still can't get the person to believe and support you - sounds like an endless loop. Enter...acceptance and commitment therapy and mindfulness!

A large international charity once implemented an anti-domestic violence programme in a south east Asian country, empowering women and teaching them to believe that domestic violence was wrong. They started standing up for themselves, incidences of serious violence increased.

 

[Trish]

This strategy reminds me of workplace resilience training for people being bullied at work, which is the wrong way around. They should sack the bullies.

Similarly, it should not be up to people with chronic illness to learn to cope with prejudice. It's the prejudice that needs to be tackled with education and sanctions on those who continue to discriminate.

 

[Sean]

Has the medical profession ever considered stopping the invalidating?

I mean that is where the problem started, and clearly is going to go right on coming from.

 

[rvallee]

Thus far, training for medical professionals in validating communication has emphasised enhancing empathy and shared symptom understanding

All the wrong focus. You can't fake this, and all this training is about not just faking it, but about lying, then lying about the lying effectively. They respond to the problem with a more devious and dishonest form of the problem. Again and again. Like they do here. This article is very much the problem describing itself as not being the problem, anywhere but here. It even calls medical gaslighting something else, because it doesn't consider it to be invalid. Which is more gaslighting.

These people don't have a damn clue. They're like multibillionaire aristocrats 10 generations deep talking about the struggles of poor people, on the basis of some documentary they saw once at Cannes drunk on $2K/bottle champagne. Just completely out of touch.

Illness invalidation from family members was most strongly associated with distress

This is obviously false in a "it's not being pushed that caused the death, it's the falling very rapidly onto the pavement that did it" sense. Family members don't deny the reality of chronic illnesses on their own, they do so because medicine does. The medical profession is the push from a tall building, the family members refusing to help is the hard pavement. They actually remove any and all agency and responsibility from the only people responsible.

What a mediocre mess.

Has the medical profession ever considered stopping the invalidating?

I mean that is where the problem started, and clearly is going to go right on coming from.

Stop bullying them with your suffering! Basically.

 

[Sean]

They actually remove any and all agency and responsibility from the only people responsible.

Exactly. Pointing anywhere and everywhere, except at the ongoing root cause of the problem.

 

[rvallee]

Exactly. Pointing anywhere and everywhere, except at the ongoing root cause of the problem.

Reminds me of the expression: if everywhere you go to it smells like shit, take a look at your own shoes.

But since they carry so much shit on their shoes everywhere they go they leave a clear trail of it that they gleefully point at, as if we can't see that the trail obviously marks out their footprints and you can trace it all the way to their shoes.

But they have the full prerogative to use "nuh uh" as a universal excuse. And it works. So they keep using it. For all our technological progress as a civilization, we still fully run on a primitive might is right algorithm.