Medical outcasts: How TB, schizophrenia, HIV patients fought stigma and survived to tell the tale

How far can any amount of relentless work in public health, in combating disease and disorders, go, when patients and health care workers suffer from stigma associated with the very conditions they fight to keep at bay; such a question has been raised before in public health and was done so poignantly by the India chapter of the global non profit Médecins Sans Frontières.

A girl fighting to reclaim her life from drug resistant tuberculosis being asked by extended family who would marry her now, society at large disassociating themselves from the family of a schizophrenic, women infected with HIV/TB being kicked out of their homes, a young nurse with TB abandoned by her family, asking doctors not for pills for treatment but something that would help her die; the fallout of stigma associated with such issues is far ranging and always violent. A faultline running through their work on public health, as MSF put it when they brought together people who had fought such battles to speak on the rampant discrimination they faced, on a platform called Uncharted Voices.

Deepti Chavan, who survived six years of multidrug resistant TB (MDR TB), said that the stigma came from extended family, and from doctors and nurses who attended to her over the years. Family badgering her parents about seemingly depleted marriage options aside, doctors would, in front of her, tell orderlies to change the sheets she would sit on, nurses and compounders would be scared of coming in contact with her. "It's little things like these that hurt," said Chavan, "doctors could wait a few minutes till patients have left before changing sheets".

Doctors gave up on her chances of survival many times as parts of her lungs had to be operated on and carved out. Similarly, Jyoti Dhawale, an HIV activist talked about the sheer fear with which medical staff would treat her during hospital stays for HIV related complications. Dhawale who was diagnosed with HIV during her pregnancy, gave birth to a HIV negative child, went through severe postpartum depression and divorce, has experienced how families also discard women when they are diagnosed with such conditions.

"I met doctors who had very little knowledge of what HIV medicines do to the body. I may seem fine but inside I am struggling," she said, adding that she had to fight with her doctors to get medicines changed as they would refuse to acknowledge her pain or discomfort.

As MSF's nurse supervisor Roma Harish Pariyani said, few doctors and nurses followed the universal protection practices of treating all patients with gloves and masks, instead reacting with fear to a TB or HIV patient and then yanking on the protective gear.

NO anti-discrimination law in place

Reshma Valliappan, an artist and human rights activist, living with schizophrenia brought up the question of consent, of forced treatment and labels that can strip people living with mental illnesses of their rights.

"India does not have anti-discrimination laws cutting through the private sector," pointed out Leena Menghaney, the MSF south Asia head and a lawyer. Hence, the knee jerk reaction is often to remove a person from either their school or place of employ, for example. However, the testimonies showed, problems are deeper than just the private sector.

The government is sitting on a HIV bill and a mental health bill, there is no check on whether clinical psychiatrists are doing good work or furthering damage, and many health care workers still have no access to universal protection. Till much of this is rectified, stigma will continue to hinder work in public health.