This week is Shingles Awareness Week, and I sat beside my grandmother on her bed and held her wrinkled hands. Those hands have worked for more than ninety years, raising children, cooking meals, and managing a household that never seemed to rest. Now her energy is low, and she spends most of her time lying down. Her hearing has faded, too. I have to speak loudly and lean close so she can understand me.
“Does it still hurt, Biji (Grandma)?” I asked.
She looked at me and said, “What?”
“Janayu (Punjabi word for shingles),” I said.
She nodded. “Yes, it hurts a lot. Especially at night.”
It has been more than twenty years since it began. She closed her eyes and tried to remember. “It was during your uncle’s engagement,” she said.
She told me how it first appeared — small blisters, painful and red. “Burning, like someone had placed hot coal on my skin. The pain came first, then the blisters,” she said. “At that time, in India, your aunt (her daughter-in-law), who was a nurse, took me to the hospital. The doctors gave me tablets and a cream.”
I asked if she remembered the names of the medicines, but she shook her head. “No,” she said. “The blisters healed after some time, but the pain did not disappear. It would reduce for a while and then return again. It never truly left.”
“In India, I never allowed myself to slow down. There were fields to manage and endless household chores. I lost your Nana (Grandpa) when the children were still in school, and from that day forward, everything fell on my shoulders.” She raised them, educated them, married them, and continued to work as if rest was not meant for her. “I didn’t sit,” she told me.
Even when she was in pain, she kept going. But as she grew older, she says the pain grew stronger. “It was magnified.”
When she moved to the United States in 2023, she was no longer farming, with no constant activity to distract her. The weather is colder, and she spends most of her time indoors, lying in bed. “Being inside all the time, lying down, it feels like the bed itself hurts,” she told me.
She received an injection here in the U.S., hoping the pain would finally go away. It didn’t. She says, “At night, especially, the pain becomes severe. I have lived enough, and in those moments I quietly pray to God to ease my suffering and let me find peace.” Then she tells me to ask my cousin, who works at Pfizer, if there is a stronger injection that might help her.
As I listen to her, I realize this story is not just about shingles. It is about more than twenty years of pain that stayed long after the blisters healed. It is about a woman who carried loss, responsibility, migration, and age with strength, yet still battles invisible pain every single night. When I hold her hand, I feel how fragile she has become, but I also feel her resilience. Shingles affected her body, but it never broke her spirit.
Coming from a rural background, my grandmother never had information about clinical research, and even when I asked other family members, they were unaware as well. What if she had access to this information earlier? What if she could have participated in a clinical trial that might have eased her suffering sooner? Now, being involved in research and understanding the importance of clinical trials helps me understand how important it is for families to be aware of all the options, especially medical advancements and cutting-edge treatment options, so they can make informed decisions when the need arises.
There are still countless people who don’t know that these options exist. Many suffer in silence, feeling powerless, unaware that help is available. By educating communities, meeting people where they are, and raising disease awareness and health and research literacy, Sikhs in Clinical Research is empowering individuals to make informed decisions about their own health. Awareness is needed. Everyone deserves the chance to understand their options, access better care, and take control of their health journey.
~ Ramanjot Kaur
(Author)
