Diagnosed with tuberculosis at 16, Maroofa recalls the stigma, isolation and rejection she faced during her illness. She says awareness has improved over the years, bringing hope that other survivors will not endure the same suffering.
Maroofa sits in the quiet of her room, holding a warm cup of Kashmiri pink tea, or nun chai. She takes a sip and begins recounting a chapter of her life that remains painful even after 15 years. Her gaze drifts into the distance as she recalls being diagnosed with tuberculosis (TB) in 2011. The memories, she says, remain as vivid as if they had happened yesterday.
“I remember it bit by bit, as if it happened yesterday. That phase was traumatic for me. It had a psychological impact on me, and I think I will never forget the time when I was diagnosed and everything that followed,” Maroofa says.
She was just 16 when she was diagnosed with TB. While the disease brought physical suffering, the stigma and isolation she experienced at home added to her distress. Instead of receiving the comfort and reassurance she needed, Maroofa says she was treated differently by her relatives and family members.
“I was treated very badly by my family. They thought I was untouchable. My utensils and belongings were kept separate. They would not even wash my clothes because they thought the disease would spread to them,” she recalls.
For a teenager struggling with a serious illness, the experience of being treated as a threat by those closest to her left a deep emotional impact. The separation of her belongings and the fear surrounding her illness made her feel isolated at a time when she needed care and understanding.
Maroofa says her difficulties began even before the diagnosis. She remembers visiting doctors as her condition worsened, but it took time to establish that she had tuberculosis. Despite coughing up blood, she says, her X-rays initially showed no signs of the disease.
“I was ill, very, very ill. Nobody would believe me, not even my family,” she says.
She recalls being forced to attend school despite her deteriorating health. Describing the severity of her condition, she remembers having “only five points of hemoglobin in my body”, although the exact medical measurement she refers to is unclear.
The physical weakness, combined with the disbelief she encountered, made the experience especially difficult. At 16, she struggled to understand why her illness was met with fear and rejection rather than support.
Her family’s fears were also shaped by personal loss. Maroofa’s mother had died of tuberculosis, and she says her siblings were afraid they might contract the disease themselves.
“My mother had already passed away because of tuberculosis, and my siblings were afraid that the same thing might happen to them,” she says.
While the family’s fear may have stemmed from their previous experience with the disease, Maroofa says its consequences for her were painful. She was a child dealing with illness and uncertainty while also carrying the emotional burden of feeling separated from her own family.
The memories continue to affect her. As she recounts those years, tears roll down her face.
“It has affected me so much that I still feel as if I am living with that teenage trauma. I was just a 16-year-old child, and it was not easy for me to deal with it,” she says.
Her experience highlights how tuberculosis can affect patients beyond their physical health. Fear and social stigma can compound the distress of diagnosis and treatment, particularly for young patients who depend on their families for emotional and practical support.
However, Maroofa believes that attitudes towards tuberculosis have changed considerably over the past 15 years. She says awareness about the disease has increased and hopes that survivors today are less likely to face the degree of stigma she experienced.
“Things have changed a lot in these 15 years. There is awareness now, and I am happy that survivors do not have to suffer to the extent that we once did,” she says.
For Maroofa, this change offers hope. Greater awareness can help families understand the disease, challenge misconceptions and provide patients with the support they need during treatment and recovery.
“Tuberculosis is preventable and curable, but recovery involves more than overcoming the infection. Patients who experience discrimination or isolation may continue to carry painful memories long after their treatment ends. Recognising these experiences is important to ensuring that people affected by TB receive compassionate care”, says Naseer Ahmad, a mental health counsellor.
Fifteen years after her diagnosis, Maroofa can see how far awareness has come. Yet the memories of her adolescence remain difficult to leave behind.
Her story is a reminder that a patient battling tuberculosis needs more than medicine. They need to be believed, supported and treated with dignity. For a 16-year-old facing a serious illness, the reassurance of family can make a difference, and its absence can leave scars that last long after the disease is gone.
