Picture this: You’re receiving hugs, many hugs, from faces you don’t recognize, but voices that are familiar like family. This was my morning on the day we hosted one of our largest Patient Support Group Meetings in the state of Kerala, India.
Every year our South Asia team organizes 15–20 meetings that unite hundreds of the patients we serve, their families, caregivers, and physicians. These meetings provide a safe and comfortable platform for everyone to share their insights and learn from each other’s experiences with cancer.
In my role as a local program coordinator in The Max Foundation’s South Asia region, I support more than 2,000 patients that are receiving treatment via Max Access Solutions spanning across three different states: Kerala, Tamil Nadu, and Delhi, India’s capital territory.
We call patients and their caregivers often and check up on their clinic visits. Upon greeting our patients and their families on the morning of the meeting, they expressed their gratitude by hugging my colleagues and me.
I was touched by the instant closeness we all felt with one another, it did not feel like we were meeting for the first time.
Alleviating stigma through connection
Depending on where you live, the public’s perception of cancer differs. In recent years, cancer has been less stigmatized and more openly discussed across India, but the stigma still affects the well-being of some of our patients and their families.
Patients feel isolated as their illness sets them apart, discredit them in the eyes of others and threaten their sense of identity. We hear stories of patients being denied opportunities for employment and accommodation due to their illness. Younger patients fear of losing their careers and worry about future marriage proposals. Few even worry about losing their family and friends due to their illness.
If patients are forced to hide their diagnosis, it becomes a burden, and in some cases, it creates a very serious impact on our patients’ well-being.
Stigma is partly why Patient Support Group Meetings are essential for everyone touched by cancer, be it patients, family members, caregivers, or medical professionals.
Our main goal is to connect people who are living with cancer in a place where they feel their experiences and queries belong. We want each of our patients to know they are not alone, together, we can overcome social stigma. This is also an opportunity for patients to connect with physicians and get valuable recommendations. We are grateful for the physicians who joined us on their day off (the meeting was held on a Sunday) to support our patients and their caregivers.
What I find to be one of the most beautiful aspects of these patient meetings is the diversity of hundreds of people from all walks of life coming together to support one another.
The emotion in the room is truly heartwarming, and I leave each meeting feeling inspired and even more excited about my job. In a fully-packed auditorium, the mere presence of everyone sitting together and sharing their stories provides a feeling of comfort and belonging.