The prevalence of stigma in a UK community survey of people with lived experience of long COVID 2022 Pantelic et al

Abstract

Background
Stigma can be experienced as perceived or actual disqualification from social and institutional acceptance on the basis of one or more physical, health-related, behavioural, or other attributes deemed to be undesirable. Long COVID is a predominantly multisystem condition that occurs in people with a history of SARS-CoV-2 infection, often resulting in functional disability, which limits day-to-day activities. We aimed to quantify the burden of stigma experienced in a community-based sample of people with lived experience of long COVID.

Methods
Data from the follow-up of a long COVID longitudinal online survey was used. The survey was coproduced with people living with long COVID. 13 questions on stigma were included to develop a Long COVID Stigma Scale capturing three domains: enacted (overt experiences of discrimination due to long COVID), internalised (internalising negative associations with long COVID and accepting them as self-applicable), and anticipated (expectation of bias or poor treatment by others) stigma. Data were collected through a social media survey with convenience non-probability sampling.

Findings
966 (47·9%) of 2016 participants from the UK completed the follow-up survey and 888 responded to the questions on stigma. The mean age of respondents was 48·3 years (SD 10·7), and 84·6% identified as female. Roughly half (n=460, 50·4%) reported having a formal, clinical, long COVID diagnosis, and of these, 440 responded to the questions on stigma. The prevalence of people experiencing overall stigma at least sometimes was 95·4% (n=847), prevalence of enacted stigma was 62·7% (n=557), internalised stigma was 86·4% (n=767), and anticipated stigma was 90·8% (n=806). Prevalence of stigma was higher in respondents with a formal diagnosis of long COVID (97·5%; n=429) than in those without (93·2%; n=413).

Interpretation
This study highlights widespread and multilayered stigmas experienced by people living with long COVID in the UK, which presents a serious public health concern. The broader literature on stigmatised health conditions consistently suggests that stigma drives people away from health services, contributes to psychological distress, and compromises long-term physical outcomes. The higher proportion experiencing stigma in those with clinical diagnosis of long COVID might be indicative of stigma within the health-care system. Findings from this study should be taken into consideration within clinical practice and health care, social care, employment, and education policies.

Paywall, https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(22)02294-2/fulltext#

 

Shame its paywalled I am quite interested in whether this is a general question on stigma associated with everyone or just from doctors. I guess the medical field doesn't really want to find out that the stigma is mostly about how they treat patients and stigma in the wider population from others is less. This is what I would expect to see based on my own experience (100s of doctors stigmatising me and none of my friends or family or random people) but I am guessing they probably don't want to call themselves out in that way in a study to show that they are the problem here not society at large.

 

Lots here to consider, some of which is:

- what triggers stigma? (Othering for sure does)

- in this particular case, what are the issues that generate stigma? (Some of the issues are complex symptoms, gender, working age patients, economic status, lack of a solid case definition, lack of empathy, and a substantial number of the population successfully recovered from COVID - "I'm alright Jack, why aren't you?")

- is this a group of circumstances that if repeated with other groups, would also causes stigma? ( I would say so.)

Interesting the article says stigma drives people away from health services, (IME, very true), causes psychological distress, (ditto), and "compromises long-term physical outcomes."

Fascinating that some in medicine have stigmatized pwME, and are doing the same for pwLC. One would think they wouldn't want to drive away customers. But then, customers of a certain type are much more preferred. And, it seems there's enough of the desireable patients coming along, that medicine can spare a "few" outcasts.

 

In the USA they seem to be accepting patients more than in the UK and I suspect part of the reason is just their goals are aligned. Patients want proper healthcare and if they aren't provided it they wont be paying. But in the NHS there is no incentative or consequences for complete failure. No one has been fired for nonsense papers on ME/CFS, all NICE and the Department for health seem to be able to do about the widespread mistreatment in breach of the guidelines is write them letters asking them to change. Doctors with ME seem to think it might be an idea to make it a legal requirement not to harm patients intentionally... I mean the fact that is considered any form of progress says it all about consequences for malpractice in the NHS today. For an NHS doctor driving a patient away never to return is a net boon to them, less work to do with no downsides.

 

I hadn't thought about the different pay systems per country, as regards driving away patients. In Canada we have "universal health care". I put this in quotation marks because as we know, there is boom all health care for pwME pretty much anywhere.

Physicians here are entrepreneurs in private practice, but bill the government for their work. There are plenty of healthy unwell people for doctors to see here too.

 

I always thought that was the reason for the 6 month delay in giving a CFS diagnosis. By the 6 month time if no obvious cause can be found you can pass them over to the CFS clinic and they are out of your hair. Not a medical diagnosis but a procedural one. We have been processed away from medical care.

 

The fact that this is published in The Lancet, with very likely no or only muted reference to ME/CFS, is just peak irony. Literally the Spiderman pointing at himself meme. With obviously zero capacity to acknowledge that this discrimination, not stigma this is discrimination, originates and perpetuates entirely from the medical profession. If it wasn't for decades of denial and discrimination, the general public would not have adopted this attitude.

Because unlike the stigma and discrimination during the AIDS crisis, which stemmed from culture, and thus affected medicine as it is part of the culture, the discrimination came out and is explicitly perpetuated on purpose within the confines of the medical profession and the healthcare industry. It has little counterpart in culture. Yes, we still deal awfully with illness and disability in general, but overt cruelty and technically illegal discrimination is not the norm, it is only for some patients and this process derives from who medicine sees as ill or doesn't. The awfulness is directly derived from denial of the illness, it is not merely associated with it, it is fully and strictly derived from it, has no other source.

As it stands, it will not be possible to deal with systemic gaslighting because as gaslighting does, the gaslighting is denied to exist, by the gaslighters, who actually seem to find the proposition either funny or ridiculous. Which is how it perpetuates, ironically a feedback loop of fear and ignorance caused by dysfunctional beliefs about illness, spread through social structures. Because it's all projection and false attribution error.

I really wouldn't want to know what medical professionals who will read this will say as a result, no doubt they will not make the connection between their mockery of a state of negligence they deny exists and the state of negligence, because they deny it exists. What a great system, basically a set of interlocking gears where the absence of movement is hailed as magical perpetual motion by simply redefining the meaning of work down to nothing.

Hey, technically if you redefine work as nothing, everything is a perpetual motion machine, or even better.

 

That's not the way most healthcare works for most Americans. The power of the $ is in the hands of HMOs and patients get what they are given in line with the level of insurance they or their employer pays for - if you are too ill to work and your insurance runs out, and you have no other means then you can be in deep trouble.

Long COVID and Health Inequities: The Role of Primary Care

"Vulnerable populations facing postacute and chronic COVID-19 may have little or no health insurance coverage.47, 50, 51 Black and Latinx people tend to be uninsured at higher rates than white people are, particularly in states that did not expand Medicaid under the Affordable Care Act (ACA). As noted earlier, this affects the costs of testing and the resultant willingness to be tested. The Families First Coronavirus Response Act (FFCRA) requires “certain plans to cover specified COVID-19 testing services without cost sharing … however there is no federal requirement specifically mandating private health insurance coverage of items or services related to COVID-19 treatment.”52 The coverage of Medicaid and the Children's Health Insurance Program (CHIP) testing and diagnostic services varies by state, and most out-of-pocket costs are capped at 5% of family income.53 Even though Medicare beneficiaries do not pay the out-of-pocket cost of COVID-19 testing and telehealth is temporarily covered, they will pay deductibles, copays, or coinsurance in the case of hospitalization.53 Uninsured individuals—around 28 million nonelderly people, many of whom have jobs with a high exposure to COVID-19—must pay the full cost.50, 51

The second economic barrier is that debilitating and disabling symptoms interfere with people's ability to work and hence to generate income for themselves and their dependents. The vulnerable in society have less job security, less flexibility in their roles, and less entitlement to sick pay and occupational health services.54"

 

A study achieved via data collected through a social media survey with convenience non-probability sampling and which has significant gender differential which the authors don't acknowlede in the abstract, nor the fact that this imbalance is out of proportion with the commonly reported gender split in PACS studies which give only a slight imbalance - something of the order 45/55 M/F. Does this mean that women with PASC are experiencing more stigma ? Or that men with PASC don't care about stigma ? Or are men with PASC not interested in, or keyed into, online surveys ?

 

article:
Add This to the List of Long COVID Symptoms: Stigma

https://www.webmd.com/covid/news/20230113/stigma-comes-with-long-covid-diagnosis

 

"Stigma as a symptom" is really high up in the list of stupidest things ever said in medicine. Not only are symptoms subjective, stigma, or really discrimination if we're accurate, is not and happens through other people changing their behavior, it's not even a property of the patient, it's a property and function of the healthcare systems and medical training.

It's a consequence alright, but this just adds up to show how absurdly dysfunctional medicine is about symptoms. They keep talking about distress and anxiety and the like, when the simple answers is that people rightfully stop trusting medical professionals, having proven they can't be blindly trusted and that fighting a broken system takes a huge toll when you are already ill and falling behind on basic necessities. This is work medicine has to do on itself, and here they are not doing any work on themselves and instead do the exact same BS in response, as if it's our "anxiety" at them failing that needs to be addressed rather than their failure.

Propaganda, is all this is. Discrimination is ugly, in healthcare it's recklessly negligent. Keeping it framed as stigma instead puts the blame on the wrong end of things. It's the difference between "we're sorry you feel like you've been failed" vs. "we're sorry that we failed you", completely different things, only one of those acknowledges reality.

 

Agreed. Who on Earth calls stigma a symptom?