I’m sharing this highly informative and very moving lecture- The Surprising History- and Current Dilemma- of TB– from author and Crash Course co-founder John Green. As someone with a chronic illness (but not Tuberculosis), I really found myself relating to parts… especially this one:
“We like to know why things happen, especially why really bad things happen, and if a reason is not immediately apparent, we will find one. I’m reminded of a poem by Kurt Vonnegut:
‘Tiger gotta hunt, bird gotta fly, man got to sit and wonder why, why, why. Tiger gotta sleep, bird gotta land, man got to tell himself he understand.‘
And this brings us to an important facet of human responses to illness. Stigma. As a part of our desire to answer the question, why why why, by telling ourself we understand, humans commonly construct moral and ethical narratives around illness.
Like, my dad had cancer twice when I was a kid, and I saw some of this firsthand. Some said he got cancer because his parents smoked, or because he didn’t exercise enough, or because he didn’t eat broccoli, or whatever. And it’s true that secondhand smoke and poor diet are risk factors for cancer, but it’s also true that the vast majority of people who’s parents smoked, do not get cancer when they are 32 year old father of two young kids.
We do not want to reckon with a world that is merely unfair. Where some people get sick, not because they did something wrong but because the world is unjust – and in so far that is just, it’s random. And so we tell ourselves we understand, which too often means creating explanations that blame the sufferer. Stigma is a way of saying “you deserve this to happen”, but implied within the stigma is also and I don’t deserve it, and so I don’t have to worry about it happening to me.
Stigma can become a kind of double burden for the sick – in addition to living with the physical and psychological challenges of illness, there’s the additional challenge of having their humanity discounted. Think of the word, universally used in English, to describe tuberculosis patients in the 18th and 19th centuries; they were called invalids. They were literally invalid.
People living with TB today have told me that fighting the disease was hard, but fighting the stigma of their communities was even harder. Now, stigma is very complex of course, but researches have identified certain hallmarks of highly stigmatized illnesses. Chronic illnesses are more likely to be stigmatized than acute ones, for instance, as our illnesses with high levels of perceived peril. And critically, for understanding tuberculosis, stigma could be compounded if the disease is understood to be infectious.
Finally, the origin – or perceived origin – of a disease also matters. If an illness is seen to be resort of choice, it is much more likely to be stigmatized. So for instance, people with major depression are often told to choose to be happier. Just as those substance abuse disorders are told to choose to quit drinking. And some cancers and heart diseases are stigmatized for resulting from purported choice as well.
Of course, this is not how biology works – illness has no moral compass. It does not punish the evil or reward the good. It doesn’t know about evil and good. But we want life to be a story that make sense – which is why, for example, it was commonly believed up until the middle of the 20th century that cancer was caused by things like social isolation, parents were actually told their kids got leukemia because they hadn’t been adequately loved as infants. If a clear cause and effect isn’t present, we will invent one, even if it’s cruel – ‘because tigers gotta sleep, and birds gotta land, and man gotta tell himself he understand.'”
John Green
Watch the whole thing here. To learn more about TB Fighters, go here.
