Shahleen’s epilepsy journey began just three years ago, turning her world upside down. From sudden seizures at work to facing stigma in her community, Shahleen has found strength in sharing her story, building awareness, and helping others feel less alone. Her courage is inspiring change for young people everywhere.
My Diagnosis: Shock and Uncertainty
My whole epilepsy journey only started in 2022, so it’s still pretty raw.
She was working in Starbucks when she had her first seizure: "My friends said I just fell on the floor one day when I was taking the milk out and started shaking. One of the girls knew it was a seizure and rang the ambulance."
Doctors linked her seizures to a brain tumour she’d had since she was thirteen: "I’d passed out a few times because of the tumour and nose bleeds, but I’d never seized before."
The diagnosis was slow.
I didn’t see my neurologist for two years and just kept seizing with no medication. My oncologist started me on lamotrigine because he said it was really dangerous for me.
Losing Independence
Epilepsy changed Shahleen’s life in ways she never expected.
"I used to drive. I had that taken off me, so it was like I was at the top of a mountain and someone just kicked me off," she recalled, feeling her independence was slipping away, "I lost sense of who I was. I was scared to go out. If I seized on the train, I wouldn’t know where I’d got off."
Family, Culture, and Stigma
Shahleen’s diagnosis brought new challenges at home: "I’m the oldest child, so I live up to a certain expectation. In Asian culture, you want to make your dad proud. I was the first to go to university in my family."
But epilepsy is misunderstood in her community.
"In our culture, epilepsy is not a thing. People say you’re possessed by an evil entity and need to go to a spiritual leader. A lot of people have died because of this."
Her family supported her, but there were barriers: "My dad tried to find stuff about epilepsy in Urdu, but there was nothing for them to understand and educate themselves. My mum had to read and translate."
Building Awareness and Finding Community
Determined to change things, Shahleen started an Instagram page.
People from the community approached me, saying they didn’t know this was true. We got good feedback.
Her family joined her mission. "Epilepsy Action reached out and sent us mats and jumpers. We walk around with them on. My dad wears it to taxis, my sister wears it, my brother wears it to police force. It’s about bringing awareness."
She’s working with charities to get information in different languages and show people who look like her: "I hope someone from any ethnic background sees someone like me and thinks, ‘She’s not possessed, she’s working with a charity. I need to get checked out properly.’”
Hope and a Message for Young People
Shahleen wants young people to know they’re not alone: "You are not a defect and you are not something you should be ashamed of. You are someone really special and you’ve got a million people behind you."
She encourages others to see epilepsy as a strength.
Don’t think of your epilepsy as something that strips your independence away. Think of it as something that makes you stronger, like an extra shield.
Shahleen’s story is proof that sharing your journey can help break down barriers and build a kinder, more understanding world.
