Blog by Kunchok Dorjee
Covid patients are subject to stigma, isolation, and low morale. Elderly citizens, individuals without family support, health disparity populations, and those with coexisting conditions–such as HIV/AIDS, tuberculosis, mental health conditions, refugees, etc.–may be particularly vulnerable. Mitigation measures such as harsh lockdowns and forced isolation have exacerbated the stigma. Inclusion and humanity are needed now more than before. The pandemic has shown us that by no fault of our own we each can be a victim. In 2021, when my parents got critically ill from Covid-19 and then made a miraculous recovery at home, I realized how important love, empathy, and compassion–that nurture the quintessential willpower to live–are for recovery. The same tools of compassion and concern for others can help us to overcome the social stigma and its negative outcomes.
Globally, millions of people living with HIV/AIDS, tuberculosis, hepatitis B or C, etc., are victims of stigma and discrimination that in turn deter healthcare access and health seeking behavior, affecting disease control and prevention. In the case of mental health, stigma can also have life and death consequences, preventing vulnerable individuals from seeking care and increasing the likelihood of suicide. Internalization of stigma–when patients have negative thoughts or feelings about their disease status such as shame, guilt, unwantedness, worthlessness, feeling dirty, etc.–affects recovery and long-term social outcomes. At the start of the pandemic, and even now, Covid patients experienced significant internalized stigma, as my parents did.
My parents, in their 80s, live in a small village in Northern India. Usually, in the pre-pandemic times, when someone gets sick, relatives and friends would visit, bring food, provide encouragement, and help in seeking care. Times were different. Fear, anxiety, and stigma had engulfed the entire village. I urgently flew to India from the United States on May 1, 2021. My parents’ condition, especially my father’s, deteriorated soon after my arrival. As more patients were brought to the hospital, oxygen supply became unreliable; it was gut-wrenching to see the suffering and death all around. Doctors and nurses were exhausted. My father could collapse any minute. Desperate, I decided to move my parents to another hospital, with better facilities. It was a harrowing 7-hour journey to Chandigarh with both parents in one ambulance that was equipped with an unpredictable supply of oxygen, which meant tightly holding the loosely fastened regulator against the wall of the ambulance all the time lest it should fall and cut the supply off. One time, a sudden jerk woke me up–the regulator had come off and my father’s face had turned blue. Alone, scared and jet-lagged, it was the most difficult journey of my life.
In Chandigarh, my mother recovered fast. My father’s condition continued to remain critical, requiring 10-15 liters of oxygen on most days–chest imaging had revealed extensive disease. He developed extreme anxiety and panic in the ICU. My mother helped to comfort and calm him down. A team of pulmonologists and intensivists did their best. Despite the effort, my father became weaker and weaker. Physically and mentally, he was losing the battle. After around three weeks in the ICU, we were described the possibility of mechanical ventilation. I called my father. In a weak voice he said, “I would be happy if I could spend one day at home before dying.” I immediately arranged for an ambulance. As we neared and reached home close to midnight, his spirit improved.
In the ensuing days, I saw the power that love, compassion, encouragement, and positive environment can have to enable recovery. At first, my father continued to struggle with oxygen levels dropping upon performing basic functions such as speaking, urination, posturing, and eating. I encouraged my father to eat, despite his fear of passing stool, which would make him extremely breathless. My mother gave him food with love. He felt uplifted and positive. The sense of loneliness and desolation that had shrouded him was lifted. Community members came together to ensure an uninterrupted oxygen supply at home. July 25, 2021 was the last day he received supplemental oxygen. He breathes freely now. As fellow villagers come to see him, he greets them with folded hands, and an expression of profound gratitude comes to his face.
I have had the opportunity to listen to His Holiness the Dalai Lama. As I faced this hardship, one teaching particularly helped me: to replace negative thoughts and preoccupations with positive thoughts–-that we are one of the seven billion human beings, many of whom are in greater distress; and that we can try to think less of own sufferings and cultivate compassion for others. Shifting focus away from self can lighten burden and lessen sorrow. The pandemic showed us our vulnerability, interdependence, and interconnectedness of the world. Our wellness and happiness are critically dependent upon the wellness of other people, and on maintaining equanimity and peace, not hatred, with fellow beings and the environment. As we try to overcome the pandemic, invoking the tools of love and compassion can help us and people around us lessen suffering, stay composed, maintain clarity, and find happiness.
I am profoundly grateful for the support I have received. It could have been a very different outcome for my parents, as was unfortunately met by so many families, who may or may not have had the help that I have had. It showed that love, compassion, and care can wash away the effects of medical stigma and lead to tangible, meaningful recovery. This experience has also reminded me of the fragility of life, impermanence of being, and inevitability of death. For all the pain and suffering the pandemic has brought, it presents us one opportunity to be better and wiser: aware of the opportunities around us, and striving to make a good contribution in this one life we have, without causing harm.
Acknowledgement: I am deeply grateful for the support I have received:
- Delek Hospital Family including Dr. Tsetan D. Sadutshang, Mr. Dawa Phunkyi;
- Vipan K. Dwangfa, Dr. Anu Y Dwangfa, Dr. Amit Mandal, Dr. Amandeep Raguvanshi, and Mrs. Kanika Butail;
- Pema Dhondup, my uncle, for sacrificing his safety to help my parents;
- The Chao Family, Ms. Ann Down and Dr. Zorba Paster
- Members of the Tibetan community of Chauntra and Bir.
- Colleagues at Johns Hopkins including Department and Division Chairs Dr. Mark Anderson and Dr. David Thomas; mentors and colleagues including Dr. Richard Chaisson, Dr. Amita Gupta, Dr. David Peters, Dr. David Dowdy, Dr. Jonathan Golub, Dr. Robert Bollinger, Dr. Petros Karakousis, Dr. Brian Wahl, and Dr. Caroline Kensler.
Competing Interest: None
Funding: Dr. Dorjee is supported by US National Institute of Allergy and Infectious Diseases (Grant # K01AI148583), Johns Hopkins Alliance for a Healthier World (Grant # 80045453), UNOPS STOP TB PARTNERSHIP TB REACH (Grant # 134126), Pittsfield Anti-TB Association and dedicated Philanthropists.