Natalie's MS journey and how it led to the Black MS Foundation

The Black MS Foundation provides a platform for black people and people of colour with MS to share their experiences, meet others and raise awareness. We caught up with Founder, Natalie to hear about her own multiple sclerosis journey, which led her to set up the group.

I have relapsing remitting MS and was diagnosed around 2010. I had optic neuritis which led me to visit my doctor. When I was told that they suspected it might be MS, I did some Googling, which is not the best thing to do. After lots of tests at the hospital, I was eventually diagnosed and I just started crying. It was extremely devastating. All I heard him say was, “You're going to be referred to an MS nurse in your community.”

My mum was the first person I told. I went straight from the hospital to her house and I remember I was so upset, I couldn't even talk. My mum has had cancer three times, and been in remission three times. She's pretty much the strongest woman that I know so when I handed her the letter, she said, “Natalie, you’re not going to die.” We spoke about the diagnosis and if she says I’m going to be fine, as far as I'm concerned, I'm going to be fine.

I do believe that that was one of the factors in why my diagnosis took so long. I guess it was the assumption that I didn’t look like a typical person who would get MS so it must be something else. As I meet more black people and people of colour with MS, I hear that story over and over again, so it is a challenge.

We're very new but it's an Instagram page and a space that I set up initially to meet other people like me, who have MS and share the same experiences. I wasn't really finding that around me, or through other organisations. 

Lots of people have signed up and the page has grown in popularity. I started it in November 2020 and it has grown into something that will eventually become a charity and community organisation offline, as well as a website and lots of other things. The Black MS Foundation is a platform to raise awareness and a place for people of colour with MS to get support, talk, be inspired and meet each other.

I get messages from people asking that question a lot. Even after answering this, some people are still not going to understand and I'm not here to justify why this space is there. 

The Black MS Foundation is for black people and people of colour who have multiple sclerosis. It's a space where we can come together with our similar and unique experiences, because we do have unique experiences with multiple sclerosis. It's a place for us to see people like ourselves and it's a safe space for us to say how we feel, without being attacked. 

Just as there are groups for women with MS, men with MS, children affected by MS and so on, there is now a space for black people who have MS. If you don't have a problem with those other groups, I’m not sure why you should have a problem with, or question our group?

It’s about being supportive and understanding that sometimes things don't need comments, your input or opinion. You just need to lend an ear to listen. Listen and acknowledge the feelings that someone's going through, whether you have experienced or understand them yourself or not.

In organisations such as the MS Trust, it’s important to step back, look at what's going on, and say, “We've not done so great in this area,” or “We've probably not paid any attention here”. It’s about thinking, “What can we do? How can we help?” As a charity, not every group of people you represent will have an equal light shone on them. Within every organisation, there needs to be people who are able to relate to those who are not being seen and can suggest positive changes.

If you need to cry, then cry. If you feel angry, that’s also okay. Go through all of the emotions that you need to but then try to get as much information as possible about the diagnosis that you have been given. Don't Google though. Go to organisations such as the MS Trust and others set up to offer information and support to people affected by MS. 

Surround yourself with your support system, be that your family, your friends, or whoever. It may seem like it, but your life is not over. I'm not going to say ‘be strong’ or ‘don't cry’, because people are human. Get therapy if you need to and remember that you're going to be okay.

• Who gets MS? Ethnicity and multiple sclerosis - Listen to what Natalie had to say on our podcast
• Who gets MS and why? - Find out more about multiple sclerosis and ethnicity
• David's diary - Inclusion and diversity, where are we now? - An update on what the MS Trust are doing to help improve inclusion and diversity, plus a look at what we still need to do