Image by Freepik
Tuberculosis (TB) is one of the oldest illnesses known to mankind with its evidence found in some Egyptian mummies from 3000-2400 BC. It has been portrayed in art, literature, music, and cinema for centuries, and its representation evolved with the understanding of the disease. TB was often referred to as ‘consumption’ in historical literature, a disease that has had a significant medical and social impact on the lives of people.
Some authors and poets in the 19th and early 20th centuries such as British poet John Keats, portrayed tuberculosis as a disease that heightened the beauty and vulnerability of their characters, romanticising the disease by depicting their character suffering from tuberculosis as pale, delicate, and ethereal. Other authors used TB as a metaphor for societal ills and economic disparities. In some books, TB patients were stigmatised and isolated from society due to the fear of contagion, others, for example, Thomas Mann's novel The Magic Mountain, is on the experiences of Hans Castorp, a young bourgeois German, at a tuberculosis sanatorium in the Swiss Alps and explores the isolation and existential reflection of the protagonist at the sanatorium for TB treatment. In fact, these sanatoriums which were established for the treatment of TB patients, with their restorative environments, became subjects of paintings for some artists.
In India, too, the disease was often referred to as White plaque because its patients appear pale. In Indian cinema, up to late 1980s, Rajkapoor starrer Aah (1953) Hum Log (1951) and Bandini (1963), Devdas (1935, 1955), TB was depicted as the deadly disease and often portrayed its patients coughing blood in the handkerchief, hiding the dreaded disease from the family and often shown meeting with tragic end in the story.
In India, too, the disease was often referred to as White plaque because its patients appear pale. In Indian cinema, up to late 1980s, Rajkapoor starrer Aah (1953) Hum Log (1951) and Bandini (1963), Devdas (1935, 1955), TB was depicted as the deadly disease and often portrayed its patients coughing blood in the handkerchief, hiding the dreaded disease from the family and often shown meeting with tragic end in the story.
The way characters with TB were quarantined or ostracised from society in art and literature, in real life too, TB patients and their families were subjected to the social ostracization leading to enormous mental and emotional stress. In fact, many known artistic figures such as the poets John Keats, Sukanta Bhattacharya, novelists Anton Chekov, Franz Kafka, Thomas Mann, artists such as Alice Neel, Edvard Munch to name a few either had the disease or were surrounded by people who did. And their experiences with the disease were reflected in their work.
Over time, the treatment of TB advanced. In 1943 the discovery of Streptomycin by Selman Waksman, Elizabeth Bugie, and Albert Schatz brought relief to TB patients. In India National TB Control programme was launched in 1962 with an aim to provide patients with the care and cure for TB.
Soon, TB was no longer a killer disease and there were not one but many antibiotics available to treat patients of TB. As the medical knowledge about TB advanced, authors as well as artists preferred to forget the disease. “TB was no more fashionable or worth portrayal, and was soon replaced by cancer,” says Dr. Ramya Ananthakrishnan, Director, Reach, an organisation that works to destigmatise TB in India.
Unfortunately though TB was forgotten by the authors and artists, the stigma attached to the infectious disease stayed in the society. And even now, there are thousands of TB patients who face it at home, and at work.
Unfortunately though TB was forgotten by the authors and artists, the stigma attached to the infectious disease stayed in the society. And even now, there are thousands of TB patients who face it at home, and at work.
To combat these myths and reduce stigma, experts say, it is crucial to engage popular culture responsibly. Filmmakers, authors, and creators can still play a significant role in highlighting the advancements in TB treatment, the importance of mental healthcare in TB treatment, and various other issues related to TB. “Health organisations and advocacy groups can collaborate with the entertainment industry to ensure responsible and empathetic portrayal of the people affected by the disease,” says Dr Ananthakrishnan. “Encouraging survivor stories, new potent medicines that can cure even multi-drug resistant tuberculosis, the role of nutrition and companionship in TB treatment can help humanise the disease and challenge the prevailing stereotypes.”
Agrees Dr Jawahar Surisetti, a mental health expert, and an advisor to the Government of India. Though the government is putting constant efforts to mitigate misinformation and stigma attached to tuberculosis, there is a need, he points out, that governments, non-governmental organizations, healthcare providers and TB survivors collaborate and launch attractive campaigns to raise awareness about TB, its symptoms, and the importance of early diagnosis and treatment. “These campaigns need to be catchy, not drab, so that people of all sections of society take notice and remember what is shown to them in the campaign,” he says.
It is important to know that TB-related stigma is not limited to specific social classes. “While it is true that marginalized communities may face more significant challenges due to limited access to healthcare, the educated classes are not immune to prejudice,” says Dr Surisetti.
Many schemes and programs by the government such as Nikshay Mitra scheme, which invites people and organisations to support TB patients with nutrition and advance diagnostics, is step in the direction. Over 10 lakh patients have been adopted under the scheme. “There are many children who have become Nikshay Mitra. Adopting a TB patient sensitise people about their needs which a play an integral role in bringing down the stigma attached to the disease,” says Dr Raghuram S. Rao, Assistant Director General, Central TB Division, Ministry of Health and Family Welfare.
But most effective are the awareness campaigns led by TB survivors who work as TB champions. Their life stories, their struggle with the disease, their fight with the stigma, and their quest for healthy life work as lessons for those who are fighting the disease. “Such memoirs and autobiographies that share personal experiences with TB, shedding light on the day-to-day struggles of individuals—patients, caregivers, doctors--facing the disease can once again highlight the TB-related issues,” says Dr Surisetti.
Experts feel that the fight with TB is not yet over and it is important to keep talking about the disease. India still loses about 4 lakh lives to TB every year. About 25 lakh people still contract active TB. Celebrities should also play a role in raising awareness about tuberculosis, just as they are actively working to promote awareness about mental health, vaccines, and menstrual health. “There have been many celebrities who have recovered from TB. If they share their TB story with people on public platforms, it will go a long way in opening a dialogue around the subject. And we can fast progress towards eradication of this disease,” says Dr Anantkrishnan.