Finding people I could relate to made all the difference

I was 24 years old. I’d always been physically well, playing netball all my life at a high level, never drinking to excess or smoking. I had aspirations of doing a doctorate to become an educational and child psychologist, my dream career.

I’d never even heard of MS. It wasn’t on my radar at all…Little did I know that it was about to change my life forever.

Family support was limited

As I struggled to come to terms with my diagnosis, the words a “white man’s disease” rang in my ears, and scarred me for a long time afterwards. These were the words spoken by a highly educated and highly respected family member who practises medicine in the Caribbean. If this was their misconception of MS, it’s not surprising I thought this was a view perhaps shared by the wider Caribbean community also.

It didn’t feel safe to speak about my condition. And from that moment, I felt completely alone. I also felt a huge amount of shame. To this day, my MS is barely (if ever) talked about within my family. This means the family support I’ve so desperately needed, and continue to need, just isn’t there.

The strong black woman narrative isn’t always helpful

I was raised in a single-parent family, by a remarkable and inspiring Jamaican woman. The narrative of the ‘strong black woman’ was prominent.

As I grew older, living with MS, I’ve reflected on how this narrative has affected me. It was helpful in making me feel capable, resilient and in control. But it’s also deeply harmful, with a pressure to be OK at all costs, and to remain strong and fiercely independent at all times. I still find it really difficult to ask for help when I need it.

I sometimes wonder whether healthcare professionals could intervene more to make sure black people with MS actually are OK.

I couldn’t find other people who I could connect with

When I was first diagnosed, I didn’t join any community MS support groups or forums, as I was encouraged to do by professionals. At that time, the face of MS seemed to be a middle-aged white woman. I didn’t feel I could relate to their interests, aspirations, hobbies or life experiences.

These were the faces I noticed were represented on MS websites and information booklets, and the people I saw in the clinic waiting rooms at hospital. What would I talk about with them, beyond surface level politeness and niceties? Would they understand where I was coming from or my lived experience?

Because of this lack of representation, and likely also due to shame, I avoided MS groups and even meeting anyone else with MS for years.

Meeting people I felt at ease with

It was only recently, more than 10 years after being diagnosed, that I felt brave enough to attend an MS event. To meet and - possibly - talk to other people with MS about our shared experiences.

I was literally shaking with anxiety as I took the tube to the London location. But when I walked in, the space was beautifully decorated, and full of welcoming and inviting faces. I soon felt more at ease.

The event was run by ‘Talks with MS’. It’s a charity which advocates for people with MS from the black community. For me, it represents the voices of these traditionally voiceless and underrepresented people in the MS community. I had a wonderful time at the event, and spoke to others with MS who resembled me and my experience. At the beginning of my MS journey, I never imagined this would be possible.

I’ve attended several other events since, including a cosy Christmas dinner and informative and relatable webinars. Each time, I’ve felt heard, included, and my heart has been well and truly warmed. I’ve made a few friendships as a result. Even seeing a familiar face at the hospital who I can give the ‘nod’ to has been more than comforting, in healthcare settings where I’m usually very anxious.

Living life to the fullest

Living with MS means that I try to really live, and not just survive. Even though a lot of days are difficult, I try to make my dreams come true and live life to the fullest whenever possible. I love to travel and explore.

I’m planning to go to Trinidad Carnival next year – a lifelong dream (top of the bucket list if I had one.) I want to live my life as enthusiastically and memorably as possible, even if that also requires plenty of rest!

Taking up more space

Going forward, my wish for the black MS community is that we become more visible and take up more space. Not only when it comes to hearing a diverse range of experiences and narratives, but also for MS research, campaigns and information literature.

It is only then, that misconceptions can be addressed within the black community itself. And make sure black people with MS get the treatment, care and support they need and so deserve.