Questions about MS? Call us on 0808 800 8000
Chandra wearing sunglasses with the sea in the background

It’s time to listen to the unheard voices

Chandra Ruegg

When we went into lockdown in March, everything seemed surreal. Getting through the days meant staying in the present.

I was diagnosed with MS in 2015 and four years later was put on Ocrevus (ocrelizumab). I’d only recently received my second dosage in February, so I was conscious of being on quite a strong immunosuppressant medication when COVID-19 arose.

Admittedly, the initial slower pace of life lockdown brought was nice for me. MS fatigue can be difficult and travelling on the tube daily, in London, can be tiresome.

In the early days there was a false feeling of solidarity and of people all being in it together.

Then, on 25 May, a video started to circulate on my social media. It was of the killing of a Black man by the police, George Floyd. The Black Lives Matter movement quickly gained traction following the grim footage witnessed.

A different experience of MS

Today marks the beginning of Black History Month. And more so than ever I’ve really thought about what it is to be a woman of colour, and a woman of colour with a disability. Where is my place in society and where am I represented?

I often think about how my experience of MS differs due to my heritage. One of the first things I recall reading, post diagnosis, was that lack of Vitamin D seems to play a role in getting MS.

I regularly joke about the limited sunshine one gets from living in the UK - a nightmare for anyone with darker skin as it takes us longer to absorb the sun’s rays.

There are also studies that suggest people who live further away from the equator may be more likely to develop MS.

Feeling ignored and left behind

What’s struck me most about medical research, whether around MS or other chronic conditions, is that a lot of it tends to be done on the same demographic. So it can feel like I’m forgotten and left behind.

I’ve read articles which allude to the fact people of colour are listened to less when seeing medical professionals. So I’ve sometimes wondered if I’ve been ignored or not taken as seriously when complaining about my ailments.

The powerful words of Maya Angelou stir emotions in me. Her ability to recognise her worth and stay strong despite all the hardships she faced is truly amazing.

Black History Month is a time to listen to the unheard voices. To really engage and educate oneself about these hidden stories and to further understand the society we live in. The UK is a country abundant with different cultures - this difference should be celebrated and allowed to have a platform.

If we don’t see ourselves on screen, in magazines, books or publications, it can makes us feel as if we’re insignificant. That no one cares about us and that we do not belong.

We need to take stock and move forward

Being of South African heritage I’m of course inspired by Nelson Mandela. His strength and resilience are things to grasp onto and apply in my own life. Also, the powerful words of Maya Angelou stir emotions in me. Her ability to recognise her worth and stay strong despite all the hardships she faced is truly amazing.

Both their stories are so important and it’s vital they are shared and known.

Throughout October, and beyond Black History Month, I hope people make a conscious effort to gain an understanding of the under-represented.

It feels like we’re wading through complicated times and difficult conversations are arising about the past. Only through delving into the mess and taking stock of what’s happened will we be able to take positive steps forward and embrace the necessary changes.

Help make change happen

Will you share your experiences of MS to make a difference for everyone?

Join the Experts by Experience Network