I don’t mind caring for my mum, it’s normal, it’s routine, but I wish there was greater understanding on a national scale of what young carers do.
Ace (15) has been caring for their mum, Chantelle (39) for 10 years. Chantelle fell ill with glandular fever, when Ace was just 5 years old, which eventually resulted in an ME/CFS diagnosis. Being so young, Ace doesn’t remember a time before caring for their mum – it’s become part of the daily routine. Mother and teenager have built a strong bond, and are close friends, with both wishing there was more recognition and understanding of what young carers do, and how caring for a parent changes the lives of young people.
“My mum has had ME/CFS for 10 years, and she often feels fatigued from doing the smallest activity. When she was first diagnosed, she tried to continue working but it made her symptoms ten times worse. She used to work as a fraud adviser, and started off reducing her hours until having to give up work completely.
Before she became ill, mum was very fit and active. She used to go skydiving and was a Zumba instructor. Her life has changed a lot.
She organises an ME/CFS friendship group in Gloucestershire as it’s easy for her to do from home when she is feeling up to it, and it also helps reduce the feelings of isolation. It has hundreds of members. On a good day, she can go along to these groups and have a coffee with friends. My mum loves this local friendship group, it keeps her going. It’s one of the most successful support groups in the country and she was even invited to a Buckingham Palace Garden Party in recognition of her work.
Mum’s symptoms vary from day to day. Most of the time, she is in the house resting, or if it’s a bad day, she’ll be in bed.
My Nan lives nearby, she is our biggest support, and at weekends, she’ll sometimes drive us to a spot where we can watch the planes take off and land. We’ll have a picnic in the car, and it gets my mum and I out of the house. Also, my auntie lives nearby, and my great-grandparents phone everyday to see how we’re both doing.
Mum has recently got a wheelchair to give her more freedom and I can help her get around.
I do a lot around the house, it’s normal for me now. I do things like change the bedsheets, clean the house, vacuum, cook every other day – something like pasta, feed the cats and change their litter trays, and unpack the shopping delivery as Mum can’t lift things. We have two cats, and they are a good stress reliever for both of us.
I’m in Year 10 at school, so I have lots of homework to do as I am studying for my GCSEs. Being a young carer doesn’t stop while I’m doing my studies, and because I’ve also been ill and in hospital this year, it’s hard to catch up at school. My morning routine, before I catch the bus to school, is the same as my afternoon routine – I do the chores that need doing.
It has made me more independent, and mum says that I’m different to other teenagers, more mature and responsible. My mum also feels that people don’t realise how big a deal it is being a young carer. She wishes I didn’t have to do this, but I know she is so grateful.
At school there is an understanding that as a young carer, I cannot always be in lessons, and that helps to alleviate some pressure. The school also runs seasonal events for young carers around Easter and Christmas.
I don’t talk about being a young carer much with my friends. I have mentioned it to my close friends, but I don’t think it’s a big deal so it’s not something I speak about. I get on really well with a lot of mum’s friends too.
I spend a lot of time with mum, we are very close, but when I’m not caring for her, I like listening to music and musicals. I am also learning to ride a bike.
I don’t mind caring for my mum, it’s become normal, it’s routine, but I want her better too.”
Young carers like me are hidden away, nobody really knows that we are here, but we would like there to be an understanding on a national scale about what we do – to raise the voice of young carers and to recognise us. If I wasn’t here to help, my mum would need a carer to come into the house.
The ME Association joins Carers UK and charity supporters Age UK, Carers Trust, MND Association, Oxfam GB,
Rethink Mental Illness, and The Lewy Body Society to seek increased visibility and raise awareness
of the inequalities carers face on a daily basis
