“Because the country, it seems though, has turned their back on me”: Experiences of institutional betrayal among veterans .. with GWI, 2021, Bloeser

Full title: “Because the country, it seems though, has turned their back on me”: Experiences of institutional betrayal among veterans living with Gulf War Illness

Highlights
• Institutional betrayal can occur when institutions fail to protect constituents from harm.
• Veterans living with Gulf War Illness describe institutional betrayal in healthcare.
• Veterans sometimes give-up on healthcare because of these experiences.
• Institutions, as well as individual providers, must address institutional betrayal.

Abstract

People living with medically unexplained symptoms (MUS) often have poor quality of life and health outcomes. Many struggle to engage with and trust in healthcare systems. This qualitative study examined how experiences with institutions influence perceptions of medical care for MUS by applying the theoretical framework of institutional betrayal to narratives of U.S. military Veterans living with Gulf War Illness (GWI). Institutional betrayal refers to situations in which the institutions people depend upon for safety and well-being cause them harm. Experiences of institutional betrayal both during active military service and when first seeking treatment appeared to shape perceptions of healthcare in this sample. Veterans expressed the belief that the military failed to protect them from environmental exposures. Veterans' concerns regarding subsequent quality of healthcare were intrinsically linked to a belief that, despite official documentation to the contrary, the predominant paradigm of both the U.S. Department of Defense and the U.S. Department of Veterans Affairs (VA) is that GWI does not exist. Veterans reported that providers are not adequately trained on treatment of GWI and do not believe Veterans' descriptions of their illness. Veterans reported taking up self-advocacy, doing their own research on their condition, and resigning themselves to decrease engagement with VA healthcare or seek non-VA care. The study's findings suggest institutional level factors have a profound impact on perceptions of care and the patient-provider relationship. Future research and policy aimed at improving healthcare for people living with MUS should consider the concept of institutional betrayal.

Paywall, https://www.sciencedirect.com/science/article/abs/pii/S0277953621005438

 

I find what Wessely did with Gulf War Syndrome substantially worse than what he did with ME, in my opinion. He argued a lot more explicitly that GWS was a kind of mass hysteria based on poor quality evidence and sketchy reasoning (https://www.kcl.ac.uk/kcmhr/publications/assetfiles/gulfwar/Wessely2001-tenyearson.pdf), which had a great deal of influence on the approach to GWS. Leading to an approach of trying to push GWS under the rug, and disbelieving the experiences of thousands of veterans left disabled after they went to war.

Not that it's all his fault, his arguments were accepted by people in power and medicine, and his arguments were likely informed by views prevalent amongst medical professionals.

 

I don't know if it's still the same but 30 years ago or so if you wanted to see what happened to ex servicemen who struggled to adapt to civilian life then a stroll under Waterloo bridge was enlightening.

A colleague & I were visiting offices of a very well known multinational business on behalf of my employer. They asked us to call them from Waterloo when we reached the station but we didn't bother and chose to walk the short distance instead of letting them send a car - it seemed excessive for a such a short distance. Then we realised why.

The subterranean walkways were a city for the homeless. Most of them servicemen. People who risked life and limb in the service of their country for not very much pay and been damaged by that service in one way or another. Simply left on the streets.

Probably because he already knew he could get away with it as the establishment already treated them so badly. SW is, above all else a political animal. I think he plays the pipes to the tune of those who pay him.