By prioritising psycho-social support alongside medical interventions, we can create a safety net for patients and families. (Express file photo by Partha Paul)
Written by Aarti Batra
For children diagnosed with thalassemia, a chronic blood disorder, treatment revolves around a meticulous regimen of hospital visits, blood transfusions, and medication adherence. While these interventions are undeniably crucial for physical well-being, a less readily apparent challenge exists — the psycho-social impact of living with a lifelong condition. The current healthcare system, heavily focused on the somatic aspects of thalassemia management, often overlooks the critical need for robust psycho-social support for both patients and their families. The current healthcare system doesn’t address the psychological impacts of the disorder, potentially jeopardising their overall well-being and treatment success.
The emotional impact of thalassemia is significant, constant anxieties concerning treatment adherence, potential complications, and the ever-present awareness of the disorder can lead to the development of depression, low self-esteem, and social isolation. The most severely impacted group of patients are adolescents as they usually grapple with body image concerns due to growth delays and facial deformities caused by iron overload. Thalassemia at times also puts limitations on physical activities, and amidst frequent hospital visits, isolation becomes a self-perpetuating cycle, further fueling feelings of loneliness and despair. In my teenage years, I felt the sting of these issues.
Around 14, while my peers were hitting puberty and undergoing rapid physical changes, I was battling high iron levels and a poorly managed illness. This manifested in my physical appearance; I looked weak, younger than my age, and completely different from my peers. My appearance caused them to believe something was seriously wrong, ultimately pushing me away. A sense of sympathy, rather than camaraderie, formed around me. I was seen as the sick student who deserved kindness, not friendship. Throughout school, I battled loneliness and bullying due to my physical limitations. Even educators lacked the sensitivity to navigate chronic illnesses. They often treated me as a student with no future, someone who should simply focus on passing exams rather than pursuing goals.
However, the challenges faced by thalassemia patients extend beyond childhood and adolescence. Adults with thalassemia confront a unique set of obstacles. Establishing and maintaining meaningful personal relationships becomes an uphill battle. The fear of placing an undue burden on a partner, anxieties surrounding disclosure of their condition, and at times physical limitations imposed by thalassemia create a barrier to intimacy. Workplaces can also be isolating environments. The necessity of frequent hospital visits, potential fatigue, and limitations due to the disorder can lead to a sense of inadequacy and hinder career progression.
As an adult with thalassemia, I find myself in a much better space. While anxieties about forming relationships and the ever-present fear of mortality persist, I am a confident person with a fulfilling life and big aspirations. The privilege of having resources to manage my condition has been instrumental. Time and again, I’m reminded that navigating a chronic illness requires a village (family, friends, partners, educators, healthcare professionals, peers with thalassemia, etc.) to support the journey towards independence. Most people with thalassemia don’t get this support. Institutionalised mechanisms established especially to provide these support systems to individuals, hence, becomes essential.
Psychosocial support in all its forms is essential. The impact is not restricted to the patient. Extended families may harbour latent stigmas surrounding thalassemia. A lack of awareness can lead to unnecessary restrictions or overprotectiveness towards the patient, further isolating them from their support network. The emotional strain on parents as caregivers also makes them vulnerable to psychological challenges and social stigma.
Investing in psycho-social support is not merely a compassionate act; it’s a strategic move towards achieving better overall health outcomes for thalassemia patients. Integration of mental health professionals within treatment teams can equip patients with coping mechanisms, address anxieties, and foster a sense of empowerment. Support groups create a safe space for individuals and families to share experiences, find solace in shared struggles, and learn from each other’s successes. Age-specific therapy sessions can effectively address the unique concerns of children, adolescents, and adults. Educational workshops for patients and families can equip them with knowledge and resources, enabling them to advocate for their needs and manage their condition more effectively.
Healthcare professionals require training to identify signs of emotional distress and refer patients to appropriate mental health resources. Policy changes are crucial as well. The Ministry of Health and Family Welfare under the National Health Mission has laid out guidelines for treating and managing hemoglobinopathies. Amending these by adding a section on the mental and social well-being of patients is a fundamental requirement. Patient advocacy groups and societies play a huge role in putting forward these concerns on national and international platforms.
By prioritising psycho-social support alongside medical interventions, we can create a safety net for patients and families. People with thalassemia have a better life expectancy now but due to a lack of support structures, the quality of their lives remains low. A person cannot have an independent life solely with the help of blood transfusions. There is a need to create support systems that address the unseen challenges, empower individuals, and equip them to embrace life beyond the limitations of their illness.
The writer is PhD Candidate at the Department of English, University of Delhi and Research Assistant at Oxford Policy Management
