Malaysian woman shares dystonia and epilepsy battle on social media

‘I want to help people understand that disability is a part of human diversity,’ says Nisshaa. Photos: Nisshaa Muniandy

Twenty years ago, when she was seven, Nisshaa Muniandy was diagnosed with the challenging conditions of dystonia and epilepsy. Her school years were marked by teasing from her peers, and she even grappled with thoughts of suicide.

Fortunately, the Puchong, Selangor-based woman has managed to overcome her challenges through multiple counselling sessions and a confidence-building course, ultimately rekindling her self-assurance.

“Attending the confidence course helped me challenge negative thoughts, set goals, and build a support network. I used to struggle with self-confidence due to discrimination, limited opportunities, and mental health challenges. But now I’m more likely to speak up, take risks, and stand up for myself. I’m happier and more fulfilled. If you’re struggling with confidence, seek help. You’re not alone,” said Nisshaa in a recent Zoom interview.

Nisshaa, an English teacher at a private school in Bukit Jalil, Kuala Lumpur, uses her TikTok and Instagram accounts as a platform to share her experiences and inspire others.

‘Despite facing medical challenges, I have managed to gain employment, and this means the world to me,’ says Nisshaa.

In the last five years, she’s uploaded 70 TikTok videos and 160 Instagram posts that include her struggles with her disability, teaching students and makeup transformations. She has openly discussed her dating experiences, including instances of facing rejection due to her illness.

“I want to educate others about disability and inclusion. I want to help people understand that disability is a part of human diversity and that people with disabilities are just as capable as everyone else. I believe that education is the key to creating a more inclusive and just society.

“I want to show people with disabilities that they can achieve anything they set their minds to. I hope that my videos will inspire them to pursue their dreams and to never give up on themselves,” she said.

Her TikTok has garnered over 160,000 likes, and she has more than 30,000 followers on Instagram.

“I know that when I was struggling, I felt very alone. I didn’t see anyone else who looked like me or who was going through what I was going through. But if I had seen someone else sharing their story, I would have known that I wasn’t alone and that there was hope.

“I also want to share my story to raise awareness about disability and mental health. I want people to know that these are real issues that people face, and that we need to talk about them more openly. I believe that by sharing my story, I can help to break down the stigma surrounding disability and mental health,” said Nisshaa, the eldest of three siblings.

Nisshaa shares her journey on living with dystonia and epilepsy in her documentary ‘Nisshaa’s Unyielding Journey’ on her YouTube channel.

She also manages a Facebook page called The Unique You, where individuals can share stories about living with disabilities, among other topics.

Last month, she uploaded an eight-minute documentary titled Nisshaa’s Unyielding Journey on her YouTube account which shares her journey living with the neurological disorder.Positivity in disability

Around 50 million people worldwide have epilepsy, making it one of the most common neurological diseases globally. In many parts of the world, people with epilepsy and their families suffer from stigma and discrimination, as reported in Epilepsy: Key Facts on the World Health Organisation’s portal.

Online medical website mayoclinic.org describes dystonia as a movement disorder that causes the muscles to contract involuntarily. The muscle spasms can range from mild to severe. They may be painful, and they can interfere with your daily tasks.

When stressed, Nisshaa finds solace in yoga.

There’s no cure for dystonia, but medications and therapy can improve symptoms.

Dystonia can affect various parts of the body, leading to uncontrolled and often painful muscle spasms. It’s difficult and Nisshaa tries to cope with her condition by having a positive attitude.

“It is important to have a support group, seek professional help, educate myself about my condition and being an advocate for myself. I have learned to listen to my body and to take care of myself. I make sure to get enough sleep, eat healthy foods, and exercise regularly. I also avoid stress triggers and take my medications as prescribed.

“For example, when I am feeling pain, I try to distract myself by doing something that I enjoy, such as reading, listening to music, or spending time with my loved ones. When stressed, I find solace in nature walks, baths, calming music, and yoga. Living with dystonia is not easy, but it is possible to cope with the challenges,” shared Nisshaa, whose dystonia diagnosis is categorised as moderate to severe.

Cikgu Nisshaa

Securing part-time employment as a teacher in a secondary school remains one of her most significant achievements.

“Despite facing medical challenges, I have managed to gain employment, and this means the world to me. It is a testament to my resilience, determination, and passion for teaching. It also shows that it is possible to achieve your dreams, even if you face obstacles along the way,” said the Universiti Malaya graduate who has a Bachelor of Education (Hons) – (TESL) and Master of English Language Studies.

She teaches English once a week in school, relying on PowerPoint presentations to avoid writing and conserve energy.

'It is possible to achieve your dreams, even if you face obstacles along the way,' says Nisshaa.Nisshaa has also turned to writing, particularly poetry, to express her emotions and experiences with dystonia. She has written over 100 poems, exploring various themes including isolation, identity, resilience, and hope.

“I believe that poetry is a powerful tool for healing and transformation. I hope that my poetry can help others to understand dystonia and to feel seen and heard. I also hope that my poetry can inspire others to embrace their own unique stories and to live their lives to the fullest.”

In July, Nisshaa raised RM113,010 – through online crowdfunding and charity platform simplygiving.com – for her deep brain stimulation surgery. She underwent the operation last week. It involved implanting electrodes in the brain and a pacemaker-like device under the skin of the chest to reduce the severity of dystonia symptoms.

“My dystonia has gotten worse over time, as I have aged. I am now finding it more difficult to perform everyday tasks, such as walking, eating, and dressing myself. I hope I will feel better after the surgery."

And after the surgery, Nisshaa hopes to publish her poetry book, The Dancing Body: A Celebration of Movement And Joy, early next year.