My name is Nikoma Bell, I live in Dudley, UK, with my wife Simone and our 4-year-old daughter. I was diagnosed with MS back in 2018 and sometimes I feel like I’m the only black man with MS. So, I’m making it my mission to create a safe space for black men with MS to be vulnerable.
My first symptoms started back in 2016; I was on tour in Australia as at that point I was a Sound Engineer, a job I’d done for over 20 years. I developed a really bad headache which I thought was down to me taking a 24hr flight and then going straight to work. However, the headache didn’t go away and while I was working one day, the vision in my right eye suddenly became blurred. It took me two weeks before I finally saw a doctor, we were in Japan by that point. The doctor confirmed that I had optic neuritis.
Fast forward to 2018, after suffering severe balance and vision issues, and after numerous visits to the GP and hospital, I was finally diagnosed with multiple sclerosis.
As strange as it sounds, it was a relief being diagnosed, as up until then I could only try and guess what was happening to me and why I was experiencing these strange symptoms. However, I had no idea at that point how MS was going to change my life. I now live with vision and hearing impairment, cognitive issues, brain fog, fatigue, insomnia, circulation and balance issues. The balance issues also mean I use a walking stick at times. MS has also meant that I am no longer able to work as a touring sound engineer because of the rigorous schedules involved.
Attending a weekly MS support group has been really helpful for me. I am around other MS warriors and we can all share stories and experiences which others relate to. A sense of community and affinity is so important when living with a lifelong condition like MS. However, one thing that is clear, week on week, is that I am:
a) one of a very small number of men in the room,
and
b) the only black person in the room.
This mirrors how I've felt since my diagnosis. The feeling that I am the only black man living with MS. Whilst I know that this is not the case, it’s been rare to meet other black men who are also on this journey. Hence, the reason I am now on a mission to raise more awareness of black men living with MS and my vision is to create a support hub for them.
For me, this is so important because everything I saw growing up, and what I viewed as being a man, as displayed by my father – has been taken away by MS i.e. to protect and provide for my family as I used to. This has had a detrimental impact on my mental health, and it is something that a lot of people don’t realise about MS. It's not just the physical effects but also the mental ones.
So I want to give black men a safe space to be vulnerable. A place to share our experiences and to gain support, because in many cases, traditional masculinity roles and stereotypes have caused us as black men to struggle with sharing our emotions and therefore often made us reluctant to seek help for our mental health.
If you are interested in joining the hub, or for more information, please visit brotherssupporthub.co.uk
