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In which John discusses what actually causes the stigmatization of certain health conditions, and how best to fight stigma. SOURCES:

The article about how perceptions of peril, origins, and perceived controllability affect stigmatization was very helpful to me. (It even has a visual aid!):

This report about HIV-related stigma across geographical and social contexts was very helpful for me, and included lots of observations about how gender and socioeconomic class affect stigmatization: (As you'll see, there are also many examples here of how mere education/information does not end stigma, although it can help.)

This paper explores stigma in mental illness and why "awareness" alone has not decreased it much:

and lastly I was helped by this article on mental illness stigma:

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Good morning Hank it’s Tuesday,

So there’s a lot of talk these days about ending the stigma, especially when it comes to mental illnesses but also when it comes to other highly stigmatised diseases and driving through Sierra Leone a few months ago I was discussing stigmatisation with Dr Builer Berry and he pointed out to me that we can’t really know how to end stigmatisation until we grapple with what causes it- something I’d never really thought of before.

So the classic definition of stigma is that it’s a mark of disgrace that reduces someone from a whole and usual person to a tainted, discounted one. The word comes from a Greek word that described a mark placed on slaves to denote that they were less valuable than other people and of course when the social order sees you as tainted and discounted, discrimination and isolation become much more common especially if you are from a group that is already discriminated against.

For example, worldwide diseases that disproportionately affect women are more highly stigmatised as are diseases that disproportionately affect poor people and also, stigmatisation is highly context dependent: like it’s easier for me to live openly with mental illness because I don’t have to worry about applying for jobs where a prospective employer might learn about and be concerned by my mental illness- I hope I don’t have to apply for any more jobs. 

Buf okay, so what actually causes stigma and why are some diseases more stigmatised than others? Well this has actually been studied and researchers do have a few ideas.

First and maybe most importantly, there is perceived peril- highly stigmatised illnesses are often seen as a threat to healthy people. Many people including people who intellectually understand that for instance, HIV cannot be transmitted through hugs or handshakes  still incorrectly perceived peril when encountering people living with highly stigmatized diseases. 

The mentally ill meanwhile, are often perceived as unstable or dangerous and so the perceived peril may be less about contracting the illness than becoming an indirect victim of it. It does seem like education can help reduce this stigma but only to an extent.

Then we have origin and controllabilty. Diseases that are seen to be the result of choice are more highly stigmatised than those that aren’t. Like the mentally ill are often told to buck up or snap out of it or whatever which believe me we would like to but we can’t because we don’t actually have the control that is ascribed to us by the stigma. And origin factors in when diseases are for instance, sexually transmitted and therefore seen as some kind of punishment for sin.

But, John from the future here, just to state the obvious- that’s not how biology works, like viruses do not have a moral compass and we have long pretended that they do because we want life to be a story that makes sense.

This is why, for instance, in the middle of the 20th century, it was commonly believed that cancer was caused by childhood depression and social isolation. I think this is also why mental illness has been associated with demon possession. We want to understand the cause and effect, we want the story to have a moral.

 But nobody deserves illness, deserving is the wrong frame through which to look at illness. Illness isn’t like some punishment from on high, it’s a side effect of having a body.

Alright, so the last cause of stigma cited in many studies is “course instability” which is to say that illnesses that are likely to be fatal or chronic are more highly stigmatised as are illnesses that have an unpredictable course and as better treatments for diseases emerge, those diseases end to become less stigmatised like Syphilis for instance which was probably the most stigmatised illness in the world 200 years ago but now, it’s curable.

So one way we can reduce stigma is investing in research and treatment of highly stigmatised diseases. While mental illness treatments have gotten vastly better over the last few decades, we still have a long way to go and the same can be said of HIV and the availability of anti-retroviral therapy. 

But to really end stigma, we also have to resist the urge to see illness as part of some moral narrative. How you got sick  shouldn’t determine whether you’re able to get well and the pain of illness shouldn’t be compounded by the pain of isolation.

In short, we need to get better at treating illness but we also need to get better at challenging narratives that look for fault in the lives of ill people rather than looking for ways to help.

Hank, I’ll see you on Friday.