When Sharon* was diagnosed with fibromyalgia, her eldest daughter Chloe* had to take on caring responsibilities far beyond her years. With support from Family Action’s young carers service and the Christmas Toy Appeal, the family has found support and understanding – from practical help at home, to the simple happiness of seeing her children smile again.
I try to be independent, the other day I decided to go shopping and I thought I could do it without the wheelchair, but then my legs gave out in the pound shop, and I had to get my daughter to come down with the wheelchair. When I try and push myself it gets worse.
My fantastic young carer
Chloe’s always been a mummy’s girl – she’s really fantastic – and I think our experiences have brought us closer. She has had to help me with nearly everything, as I can’t bend down, and sometimes I can’t stand up… she’s having to cook and clean, tidy and wash up, because I can’t do any of that.
Since around six or seven she’s had to do a lot – like settling her sisters down and putting them to bed – she essentially took on the full parenting role.
I felt really, really horrible, and sometimes I’ll still sit down and cry and say "you shouldn’t have to do this role".
When I left hospital after the birth of my youngest child, I was fine for a day or so and then I was in a lot of pain, but the doctors told me I was fine, so I carried on for two years before they finally diagnosed me with fibromyalgia. Around that time, I could still do some stuff – I could still go on the school run, for instance – but I was struggling, and it gradually got worse and worse and worse.
I wasn’t able return to work and I kept thinking “why is this happening to me?”… I was really down and depressed and, although I was proud that my daughter was so capable. I was upset and guilty that I couldn’t do it myself.
I was in two minds about the young carers service when school suggested it initially. I was scared they would be like social services, that we’d get social workers involved and they’d take my kids off me…
I wanted the best for my daughter so we gave it a try. She seemed to get a lot out of it, as it gave her someone to talk to and open up to that wasn’t me…
When she came back she had a smile on her face, and that was one of the most precious things I could see happening.
Family Action has helped us all
We’ve all benefitted in some kind of way from Family Action’s help – whether it’s helping the kids manage their moods or me with sorting the house. They’ve arranged for us get stuff like school uniforms and shoes, a grant for furniture and helped arrange for a wheelchair and fitted handrails for the stairs.
Chloe also started going to the LEAP** group where she hangs out with other young people with similar caring responsibilities, which she sometimes struggled with as she’s currently undergoing an autism diagnosis.
She’s had the toughest life on earth but now she’s with a group of young people who get her.
Christmas Toy Appeal
Last Christmas we went to the theatre with the LEAP group and my children also received gifts from the Toy Appeal.
My kids aren’t like most other kids, and if I go to the pound shop and buy them something they’ll be grateful for what they get. For weeks after Christmas, my table was full of the books and pens they were given – they’d just spend hours doing colouring and I’d be able to fall asleep or get some rest.
Chloe was given a phone charger and headphones that she wears all the time now – she uses them as ear defenders as she feels safer with them on. They knew the kids and they put thought into it – Family Action’s support has been brilliant, and we couldn’t ask for better help.
* Names changed at the request of our interviewee.
**LEAP (Leeds Young Carers, Engaged, Active, Participating)
LEAP is a co production group for young carers in Leeds, it is a platform for young people to have their say on issues that affect them and to influence the services they receive.
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