Medical ambivalence and Long Covid: The disconnects, entanglements, and productivities shaping ethnic minority experiences in the UK, 2025, Ridge+

[SNT Gatchaman]

Medical ambivalence and Long Covid: The disconnects, entanglements, and productivities shaping ethnic minority experiences in the UK
Ridge; Broom; Alwan; Chew-Graham; Smyth; Gopal; Kingstone; Gaszczyk; Begum

Structural violence -related to ‘isms’ like racism, sexism, and ableism – pertains to the ways in which social institutions harm certain groups. Such violence is critical to institutional indifference to the plight of ethnic minority people living with long-term health conditions. With only emergent literature on the lived experiences of ethnic minorities with Long Covid, we sought to investigate experiences around the interplay of illness and structural vulnerabilities. Thirty-one semi-structured interviews with a range of UK-based participants of varying ethnic minorities, ages and socio-economic situations were undertaken online between June 2022 and June 2023. A constant comparison analysis was used to develop three over-arching themes: (1) Long Covid and social recognition; (2) The violence of medical ambivalence; and (3) Pathways to recognition and support.

Findings showed that while professional recognition and support were possible, participants generally faced the spectre and deployment of a particular mode of structural violence, namely ‘medical ambivalence’. The contours of medical ambivalence in the National Health Service (NHS) as an institution had consequences, including inducing or accentuating suffering via practices of care denial. Despite multiple structurally shaped ordeals (like healthcare, community stigma, and sexism), many participants were nevertheless able to gain recognition for their condition (e.g. online, religious communities).

Participants with more resources were in the best position to ‘cobble together’ their own approaches to care and support, despite structural headwinds.

Link (Social Science & Medicine) [Open Access]

 

[SNT Gatchaman]

One problem in gaining recognition for symptoms facing participants was that people with Long Covid could appear well despite experiencing debilitating symptoms. Thus, a disconnect is routinely set up between what participants experience, and what others (including family and medical practitioners) observe. Subsequently, participants reported barriers in terms of what their loved ones and communities could comprehend about their illness:

‘[People] say, ’Oh, why don’t you just do some exercise?’ They’re just ignorant … But, you know, doctors don’t know what it is … So, it’s a very terrible illness and the quality of life is very low … people don’t understand.’ Male, Bangladeshi, aged 30–39.

Subsequently, mental health was frequently undermined when participants were not believed about their Long Covid symptoms by healthcare professionals, and they did not get appropriate help. In turn, mental health difficulties could be met by a lack of understanding in some communities, since such problems were frequently stigmatised and poorly understood there

One distinctive feature of Long Covid symptoms was that their strangeness was difficult for others to accept, e.g. body vibrations and brain zaps: “… crazy, crazy symptoms … these mad changes to your physical and mental health, and people don’t trust your word, that is traumatic …”

Distinctive to Long Covid as a long-term condition was the fear of reinfection with SARS-COV-2 causing worse symptoms. This meant many participants withdrew physically from others to avoid potentially worsening their symptoms via re-infection.

Another feature of Long Covid was that ‘suicide talk’ was deployed as a way of communicating the high levels of suffering involved when the gravity of symptoms was not well understood. None of our participants reported suicidality. However, one reflected on how they could well understand the process by which people became suicidal. Another participant indicated how talk of suicide, despair about symptoms and lack of hope for recovery were communicated (e.g. online) in ways that could validate suffering

 

[SNT Gatchaman]

Another element of Long Covid severity (perhaps shared with conditions like ME/CFS) was the suddenness of the disablement experienced. Here, people describe how they were left without social support compared to people disabled in more established ways (like chronic pain from injury, as well as mobility (e.g. arthritis), sensory (e.g. visual), cardiovascular, and cognitive (e.g. dementia) disabilities). Long Covid was rapid in onset and frequently severe, yet lacked the legitimacy of other disabling conditions. Participants reported being expected to find ways to cope with their new disability:

‘ … I feel very let down. It’s not me, there’s so many of us with Long Covid and we’re just lying down in bed all day, you know, I could be working, I could be making money, I could be paying taxes … I want to be a member of society. I’m disabled, I don’t want to live my life like this, and it happened overnight.’ Male, Bangladeshi, aged 30–39.

“… You can be in hell, and they still refuse to help”: the violence of medical ambivalence

A minority of participants reported that they had received good care from the NHS.

As institutionalised racism in healthcare involves invisibility and deniability, participants could not be certain they had actually experienced discrimination. However, a number of participants pointed to the subtle nature of microaggressions – unintentional actions or remarks – that are nevertheless discriminatory

The potential for exclusion from specialist healthcare added considerable drama to GP consultations. Even if people were referred for further care by GPs, medical ambivalence was also rife in secondary care, where long waits and disappointments following referrals were widely reported.

People also talked about how they were many times supported by networks of families and friends. Importantly, Long Covid symptoms could be so severe that without family support, some participants did not believe they could survive

 

[SNT Gatchaman]

community stigma and unhelpful NHS approaches get in the way of minoritised people receiving a diagnosis of Long Covid, let alone adequate care. We uncovered the multiple, structurally baked-in ordeals experienced by participants.

An additional problem being, of course, that if the inequities were resolved, those unhelpful NHS approaches still apply. No-one with this condition gets adequate care.

 

[SNT Gatchaman]

‘Medical ambivalence’ is the ‘acceptable’ face of structural violence, but we have shown how brutal it can be.

In our development of the concept, medical ambivalence is the surface experience of patients receiving performative healthcare, pointing to deeper structural violence facing such patients.

However, often participants’ hopes of recognition are dashed, as they are met with cold disbelief and discrimination. Subsequently, they may or may not get a referral for secondary care. The referral may or may not lead to good care, or it may lead to professionals just going through the motions. There is the front-stage hopeful rhetoric of available care, exemplified via the appearance of Long Covid clinics relatively early on in the pandemic. The backstage reality was of relatively inaccessible clinics varying in their approaches, lack of awareness of such clinics, long waiting lists and disappointing clinical interactions. It is hard not to conclude that if the system is not designed to perpetuate patient distress, it does little to assuage it.

Good quotes. Someone should probably try to address the problem - perhaps NHS England might like to take a look.

 

[Sean]

Getting ME/CFS or LC already puts you in a minority, both on the general health spectrum, and in the way different patient groups are treated within the health system.

 

[rvallee]

There's something distinctly weird about people like Chew-Graham studying the outcome of the very work they spent much of their career pushing, hearing about all the horrible consequences it's had, in what seems to be a relatively fair and accurate framing, and just... stick to it. They never radicalize, they don't even want to change their approach. Must be someone else's fault.

From time to time you can read glimpses of how this failure is systemic, making it especially too hard to fix in that it's no one else's problem specifically. But the people responsible for the distinct features of this particular systemic failure never seem bothered by it. Humans are so freaking weird.

There are very good quotes in there. Unlike most research "theme-ifying" participants' input using their own framings that distort what the patients say, this actually mirrors what the patient communities speak of it. It's not a distorted interpretation from the same system that produces this structural violence. Instead it describes a system in a state of total failure, not just because it is failing but because it is 1) incapable of understanding its own failure and 2) is completely unwilling to change from the flawed framework they have been using for decades.

And still the conclusions are very meek. Like dealing with a systemic crisis of police violence with, perhaps, don't want to bother anyone too much here, but maybe some, and I don't mean you're insensitive to this but, possibly, some sensitivity training might be in order? And other things that won't make one damn bit of difference.

Because it's one thing to describe total systemic failure, it's a whole other thing to voice it as what it is, despite being a crisis ongoing for several decades. Which is really why it's such a total systemic failure: the system simply refuses any bit of accurate criticism. Just flat out rejects it whole and refuses to change anything at all. And there is nothing on the way that could make that change, because this is a system that decides for itself what it does based on information it wants to be true, offering only fantasy, sometimes violent, where science is incomplete.