Thread by @Dr2NisreenAlwan

Our paper measuring #LongCovid stigma using a new scale: preprint (not-peer reviewed yet).
medrxiv.org/content/10.110…
In our UK-based sample, 95% experienced at least one type of stigma at least sometimes and 76% often/always.
@PantelichMarija @NidaZiauddeen @Know_HG @ClaireHastie1

13 questions were included in the LCSS capturing 3 domains:
Enacted (overt experiences of discrimination), Internalised (internalising negative associations with Long Covid and accepting them as self-applicable),
Anticipated (expectation of bias/poor treatment by others) stigma.

This is from a follow up survey of a online survey we did at the end of 2020:
journals.plos.org/plosone/articl…
We have over-representation of females, white ethnicity, and people with higher educational qualifications. All non-hospitalised in the first 2 weeks of the illness.

Disclosure questions:

61% (n=557) of respondents said that they are (sometimes of more often) very careful who they tell about their Long Covid.

34% (n=308) said that they (sometimes or more often) regretted having told some people that they have Long Covid.

A surprising finding (at least to me!) was that those who said they have a definitive clinical diagnosis of LC experienced higher levels of #stigma. Is this because they had more contact with services & interactions about their LC? Is it because their LC is somehow more visible?

To clarify, enacted, anticipated and internalised #stigma can be related or triggered by eachother or can occur independently. "For example, a person may anticipate stigma, decide against disclosing their health condition or seeking treatment and therefore avoid enacted stigma."

Just want to say, we've worked through this paper during some hard times for some of us. I'm so privileged and grateful to work with the wonderful people who are my co-authors. All of us care a lot and have a shared goal of helping people with LC. That makes a difference.

Stigma associated with health conditions is a problem. It can drive people away from treatment, help & support. It can cause tremendous stress which is not good for recovery. It can increase health inequalities in society when it compounds pre-existing social stereotyping.

Many people, including those in positions of power, want to move on & forget about covid. #LongCovid is a constant reminder. Attitudes of minimisation & rejection can reflect negatively on the reactions people living with LC get from others. Professionals should be aware of that.