Shattering stigmas: 'The Nerve of My Multiple Sclerosis'

12 June 2023

Is MS taboo in the Black community? Find out more about 'The Nerve of My Multiple Sclerosis' and its mission to normalise conversations about MS.

Living with MS is a huge challenge for many people. But some people report that in the Black community, the experience can be even more isolating. Natalie Busari, a passionate advocate, recently shared her thoughts and experiences in an interview with us.

We delve into Natalie's perspective on the importance of representation, community support, and why she started ‘The Nerve of My Multiple Sclerosis’.

It was 2015. Natalie was pregnant with her second child when the eye pain began ...

I was putting on eye liner and realised that I really couldn’t see out of one eye. Something wasn’t right.

An MS diagnosis followed in 2016. Faced with a lack of representation, she navigated the overwhelming online landscape in search of others who shared her experience. 

This lack of visibility prompted her to start conversations with her family and people in her community.

Culturally, I found it difficult to tell my family about MS. I felt like it had to be this secret.

Her frustration and determination sparked something. Natalie was yearning for a space where people with MS from Black communities could find support and understanding.

So, she jumped onto her Instagram page and started to raise awareness herself.

Her page began to grow and so many people from the Black community with disabilities commended her work in raising awareness of the daily challenges they face.

I thought, how lonely must people be feeling? I know how I felt.

The experience of attending a Parkinson's society event fuelled Natalie's determination to further develop an inclusive MS space. Witnessing the loneliness and secrecy that some people with Parkinson's experienced struck a chord deep within her.

She recognised the similarities that so many people go through after an MS diagnosis, especially in the Black community.

Natalie saw the need for tailored support and representation, leading her to create a non-profit organisation that extends beyond her own experience with MS. And so, ‘The Nerve of My Multiple Sclerosis’ was founded in July 2022. 

The organisation represents a collective effort to address the challenges faced by the Black MS community. The aim of the organisation is to break down taboos surrounding MS in the Black community, and to create an environment where open discussions can take place, empowering individuals to talk without judgment.

I wanted to build something that will empower others to start talking about their MS. When they’re ready, the platform is there.

The organisation’s mission is to combat cultural stigmas in the Black community towards multiple sclerosis by normalising conversations on difficult topics.

Also, ‘The Nerve of My Multiple Sclerosis’ seeks to reduce feelings of isolation that many people with MS experience.

As part of her foundation, Natalie has begun to organise in person and online events. She envisions building a supportive community where people can come together, engage in social activities, and find solace in sharing their experiences.

By providing a platform for these conversations, Natalie hopes to address the loneliness and lack of representation faced by many in the MS community.

The overwhelming response and heartfelt gratitude from people who have found solace in ‘The Nerve of My Multiple Sclerosis’ reaffirm her dedication to the cause.

Messages from people who now feel empowered to share their own journeys inspire her to continue her efforts.

Natalie understands that her mission extends far beyond her own journey with MS and recognises that her work has the power to positively impact the lives of many.

Together, we can create a more inclusive and supportive environment for everyone affected by multiple sclerosis.

Find out more about 'The Nerve of My Multiple Sclerosis'

'The Nerve of My Multiple Sclerosis' Instagram page

Information from the MS Trust: Who gets MS and why? 

Listen to our podcast: Who gets MS? Ethnicity and multiple sclerosis