Sickle Cell Awareness Day: How SCD is taking a heavy toll on patients' mental health in India

Hyderabad: While sickle cell disease (SCD) is often discussed in terms of pain crises, anaemia, and hospital visits, its impact on mental health remains underreported and poorly understood, especially in India.

As the world marks Sickle Cell Awareness Day today, patients, psychologists, and doctors are calling for greater focus on the emotional and psychological challenges that accompany the condition.

A Daily Battle with Unseen Pain

SCD is a genetic blood disorder that affects the shape and flow of red blood cells, leading to blockages in blood vessels, chronic pain, and damage to organs over time. For those living with it—many of them from tribal communities or rural backgrounds—the pain is only part of the problem. Depression, anxiety, social withdrawal, and academic or occupational burnout are frequently reported but rarely treated.

“Patients with sickle cell disease grow up experiencing pain from early childhood. Over time, this affects how they perceive themselves, how they interact socially, and how they see their future,” said Dr. Vandana Yadav, a clinical psychologist who works with children with chronic illness, told NewsMeter.

She added that many teenagers with SCD begin to isolate themselves during adolescence, particularly when they miss school or are unable to participate in physical activities.

Depression and Emotional Burnout Common but Undiagnosed

A 2022 study conducted by a government medical college in Odisha found that more than 40% of surveyed SCD patients exhibited symptoms of moderate to severe depression, while over 30% showed signs of chronic anxiety. Yet, only a fraction had ever spoken to a mental health professional.

“Many of these individuals are in survival mode. Their families are focused on managing physical health—doctor visits, medicines, blood transfusions—but mental health is never part of the discussion,” said Dr. Nithish Rao, a haematologist at a tribal outreach clinic.

He noted that because pain episodes are unpredictable and can strike even during simple activities like walking or sleeping, patients often develop sleep disorders, fear of public places, and low self-worth.

The School Years: Where the Stigma Starts

For young children and teens with SCD, school can become a source of humiliation. Frequent absences, fatigue during class, and a need for extra rest often lead to misconceptions among teachers and classmates. Some are labelled as lazy or attention-seeking.

“Teachers often don’t understand the condition. They may think the child is making excuses. That kind of invalidation early on has long-term effects,” said Babita R, a government schoolteacher who has received basic training on chronic illnesses through a health NGO.

Babita recalled a former student, age 14, who eventually dropped out after being mocked for limping during pain episodes and missing exams.

Gendered Impact on Women and Girls

Experts also point to a gendered dimension in how mental health in SCD patients is experienced. Women and girls are often expected to suppress their pain or manage it privately due to family obligations. Menstrual health issues further complicate their condition.

“In our surveys, many adolescent girls reported not disclosing their pain to avoid being seen as a burden,” said Rumana, a program coordinator at an NGO. “The psychological pressure on young tribal girls to ‘be strong’ and not complain often leads to internalised anxiety.”

Need for Integrated Psychosocial Support

While most SCD management protocols focus on physical health—painkillers, hydroxyurea, transfusions—experts argue that mental health support must become a formal part of treatment plans.

“There is an urgent need to embed counsellors or trained social workers in sickle cell clinics, especially in high-prevalence districts,” said Dr. Rao. “A 10-minute mental health screening should be standard practice, just like checking temperature or blood pressure.”

He also recommended group therapy models for young adults and school awareness sessions for teachers in endemic regions.

Government Response Still Lacking

Despite the National Sickle Cell Elimination Mission launched in 2023, which focuses on screening and treatment, mental health has not yet been integrated into the national SCD strategy.

“I Pretend to Be Okay” – A Patient’s Voice

“I’ve been living with sickle cell since I was six. I’m now 23. People think I’m fine because I smile, but I wake up with pain every other day,” said Rohit Nayak, a college student. “Sometimes I don’t leave my hostel room for days. Not because of pain, but because I’m just tired—mentally.”

He has never visited a therapist.

“I don’t think my parents would even know what that means,” he said.

Conclusion

As India expands its efforts to diagnose and treat sickle cell disease, health professionals say it’s time to stop treating mental health as an optional add-on. Chronic illness not only affects the body—it reshapes identity, trust, and hope. For sickle cell patients, acknowledging that invisible pain may be the first step to healing.