Romanticised to stigmatised: the changing face of TB

Melancholy and tragic beauty defined the pre-Romantic and Romantic movements of the late 18th and 19th centuries. This was reflected in women’s appearances at the time.

They used whitening powders on their face to look pale and sallow and would dampen their appetite by drinking vinegar and eating sand to obtain a waiflike figure.

The ideal of languid and fragile femininity was so popular that these women were often the subject of many writers’, artists’ and musicians’ work. Wasteful and ethereal women with fair skin, bright eyes, white teeth and a delicate rosy complexion were art. However, they were all too often victims of tuberculosis (TB), or “consumption”, one of the biggest killers in the 19th century.

TB is often associated with the Victorian era but the harsh reality is that the “romantic death” lives on today under a far less gentle guise. Sam Perkins, south-east London TB coordinator at the Health Protection Agency (HPA), explained: “A huge amount of anxiety and stigma is attached to TB”.

Rather than the romanticism of the Victorian age, TB is now seen unfavourably and many do not wish to declare they have the disease. Unfortunately, TB is once again on our doorstep. Recent figures from the HPA show that more than 9,000 cases of TB were reported in 2009 in the UK alone, the highest since 1979.

TB caused more than 30% of all deaths in Europe in the 1800s, but it also became a stylish mark of tragic beauty. Rene Dubos, a French-born physician, said: “To be consumptive was almost a mark of distinction and the pallor caused by the disease was part of the standard of beauty.” The taste for looking sickly was reflected in the heroines chosen as subjects in art, poems and literature.

Artist’s model, Elizabeth Siddal (1829-1862), was a renowned muse of pre-Raphaelite painter Rossetti. With her slender, elegant figure, masses of long red hair, white face with a rosy tint, luminous eyes and deep eyelids, she was considered the epitome of feminine beauty. She was also thought to have tuberculosis.

Mark Caldwell, in his book The Last Crusade, described this attitude towards TB as “a badge of refinement…very nearly a polite accomplishment. And if you contracted it, it led your friends not to mourn your early death so much as to venerate you as one marked out for a fate of special distinction.”

English poet, George Gordon Bryon, was reported to have said:

“I look pale. I should like to die of consumption because ladies would say how interesting he looks in dying.”

Caldwell wrote: “Perhaps the illusion of a graceful ascent from life was enhanced by the literary aura that emanated from some of its victims,” for example, the Brontë sisters, Keats, Elizabeth Barrett Browning and Samuel Johnson. He believed this made a “certain kind of sense.

“The symptoms of the disease – a gradual loss of flesh, the sparkling eyes, the flush and slight excitement brought on by low grade fever – all these suggested immateriality, a looking toward the beyond. And somehow these symptoms outweighed the more frightening and disgusting ones.”

Today, it is these “frightening and disgusting” symptoms which appear to far outweigh the romantic ones in history. People with TB often suffer discrimination, stigma, rejection and social isolation. In India, for example, it’s not uncommon for a man to leave his wife if she develops TB (TB Alert).

Perkins explained: “A lot of people think TB is sexually transmitted. A young Muslim woman who had TB didn’t want her family to know [she had the disease]. She said: ‘If you tell them I’ve got TB they will think I’m immoral’. She was very anxious about it.”

Dr Onn Min Kon, who leads the TB service at Imperial College Healthcare and is the lead clinician for north-west London TB sector, said: “There is a lot of stigma attached to TB, if you are a particular ethnicity and you say ‘TB’ then people regard you very unfavourably. It means people do not want to present nor declare that they have TB.”

Following the explosion of tuberculosis in the 19th century up until the 1980s, the prevalence of TB was on the decline. Today, TB is considered a worldwide crisis. It is also heavily associated with the HIV AIDS epidemic.

According to international HIV and AIDs charity AVERT, in HIV positive people “tuberculosis is harder to diagnose, progresses faster, is more likely to be fatal if undiagnosed or left untreated, occurs earlier in the course of HIV infection than other opportunistic infections and is the only major AIDS-related opportunistic infection that poses a risk to HIV-negative people.”

In her paper The social construction of disease: two metaphors of the tuberculous patient, Caralee Caplan wrote: “Tuberculosis and HIV co-infection complicates not only the metaphors of disease but also the diagnosis of tuberculosis, since HIV-infected individuals are more frequently affected by extra-pulmonary disease than non-immunosuppressed individuals. Furthermore, a patient afflicted by both tuberculosis and HIV must contend with the entire gamut of social conceptions of AIDS.

“With AIDS, the shame is linked to an imputation of guilt; and the scandal is not at all obscure. Few wonder, Why me?…Transmitted through blood and other bodily fluids, HIV carries with it the connotation of contamination; when infection by the tubercle bacillus is superimposed upon HIV infection, the result is the sense of a full-fledged attack on a system particularly susceptible to microbial invasion and an individual particularly vulnerable to social stigma.”

Risk factors for contracting TB include homelessness, imprisonment and drug use, which is why prevalence is so high in densely populated urban areas such as London. However, the truth is anyone can get TB and it is 97% curable. Caterlee adds: “Far from the elevating, spiritualising consumption that set the soul souring beyond the physical world, today’s tuberculosis seems to reaffirm the inescapability of one’s material conditions: tuberculosis piles impoverishment on the already impoverished, stigma on the already stigmatized.

In the Victorian era consumption, or tuberculosis, was poorly understood and adorned with glamour, art and romance. Now, 20th-century tuberculosis has become riddled with the stigma of poverty and marginalisation and this is attributed to those who have contracted the disease.

Caterlee says: “Whether labelled an artistic and spiritual genius or one of society’s unprotected outcasts, whether famous or forgotten, whether inspiring society’s highest hopes or deepest fears, the tuberculous patient is, more than a type, a suffering human.”