Growing up as a young carer: "nobody around us knew what MS was"

My mum was diagnosed with MS in her early 20s, before my brother and I were born.

After I was born she started struggling to walk more than she had done before. When I was really little she was on crutches, but she was using a wheelchair for most of my childhood. When I was little I remember not realising that was different, or that her condition seemed sad to people. As a kid, people would look at us in a pitying way. But to me it was just normal.

She could still talk then, but she was prone to health complications. We’d often be in hospital with her. I remember her getting rushed in for different things. Mum’s MS was more aggressive than it is for most people, so her disability got worse at a faster pace.

My parents had to wait for around a year for a wheelchair access car, so when I was a baby they’d have to get us on the bus. My dad would pass me to a stranger while he got my brother and mum on and then take me back!

Mum’s MS continued to progress

In the later stages of her MS Mum was practically non-verbal and had no use of her arms or any of her body. It was a horrible process to witness. One thing kept going after the other. She lost use of her arms, so then she couldn’t feed herself, and then she couldn’t talk.

Although she wasn’t that mobile for a lot of my life, she was always a strong emotional support to me. So it was really difficult when we lost the ability to communicate through words.

I understand how important care is

For as long as I can remember we had carers in the house, we had really amazing ones who’d help take care of me and my brother too. Mum couldn’t get us ready for school and make our lunches, but we always had people around who could help. 

There’s been really consistent care since I was young. I know how important care is, and how it needs to be personal for everyone.

I was aware of Mum’s needs from a young age. I’d pass things to Mum that she couldn’t reach, or if she needed Dad and he wasn’t nearby I’d go to get him. My brother and I became hyper vigilant. It was hard on my mum and dad, too, because you never want that as a parent.

It was a very difficult way to live as a kid, it was hard on our mental health. We watched things get worse over time. As a family we were always trying to work together to support Mum, or to support Dad supporting Mum. My dad especially went through some really hard patches.

As Mum became more unwell there were more things she couldn’t do and more things she needed. My brother and I would be with her every day. I’d sit with her, make her tea, make her food, help her in the bathroom, and help her in and out of her wheelchair, when that was more possible.

When she couldn’t use her arms anymore, I’d feed her and help her with everything. In the last few years she was more unwell and so a lot more care was put in place.

When I went off to uni it was really hard, I’d never not been with her. It was difficult to trust that people would be there for her. I worried that she’d need something and people wouldn’t be able to hear her. As a carer you always want to do more, but you do feel helpless. And you are to some extent.

I want people to understand MS

Growing up, nobody around us knew what MS was. Even now it’s so frustrating because I’m constantly having to try to explain it – with my limited knowledge. There’s a lot of fear when people don’t know what it is.

It was difficult with family, friends and acquaintances because no-one knows what to say or how to be supportive. They’re worried about overstepping, so they end up holding back.

When we were younger and Mum was still totally verbal, people would often talk to us instead of her, asking us things like “does she want a cup of tea?”. She could talk perfectly and was completely with it mentally – she maintained this throughout.

Don’t be afraid to ask what people need. Ask “what is helpful to you?” instead of making assumptions.

When someone is unwell it’s important they don’t feel patronised – giving them back some autonomy and control is hugely important. I’ve learned that finding small ways to help with everyday things can make a huge difference.

Putting my experiences into music

Sharing our story through my music has been really challenging because it’s such a sensitive topic for me. I feel so protective of my mum and of how our lives have been. When I released the song ‘Venus’ it was hard to be so vulnerable. But it’s been really amazing to connect with people through that song.

I’ve heard from people experiencing similar things and it naturally creates a sense of community. Mum hearing the song gave us a different form of communication, and that felt really important to me.

Thinking about the past, and the future

I watched my mum have to give up so much. There were so many things she wanted to do. She wanted to get us ready for school, make us lunches, come to my graduation. I feel heartbreak for her, for all the things she’s had to sacrifice.

I never want anyone else to have to go through that. I don’t want anyone else to be a young carer, either. I don’t want anyone to be five years old and think “oh, is mum OK?”. We need those experiences to be bypassed, and with more MS research that could be the case for others in the future.

Research will stop MS. Find out more about history making research.

Bekah has released a music video to accompany her song Venus in tribute to her mum. You can watch it on YouTube.

If you'd like to talk to someone about any of the themes in their story call our MS Helpline freephone on 0808 800 8000