Being a young carer has always been a big part of my life. I care for my younger brother, Ben who has Ullrich congenital muscular dystrophy. As I have grown older, the type of care I give has changed, and so has the way I understand it. Carers Rights Day is an important reminder that young carers everywhere deserve support, understanding, and time for themselves. This blog is my chance to share what caring has meant to me and what I wish other young carers knew.
“Caring in my family” – a sibling’s perspective
My family and who I care for
My brother is 18, funny, clever, and loves all things games, especially Pokémon and Warhammer. Our family works together to support him, but there are many things I help with because I am his sister. When we were younger, I helped him with little things like reaching for dropped toys or pushing him in his wheelchair if it was a long distance. Over time, my role changed as his needs changed.
When caring first started
When I was young, I did not fully understand what my parents meant when they explained my brother’s condition. MD is a degenerative condition, so it hasn’t always looked how it does now and I was too young to understand what that really meant. I could see that my brother found some things harder over time, but I did not know why.
“It took me many years to understand what was happening to his muscles, why he needed more help as we grew older, and what this would mean for our family.”
Learning this was difficult, but it also helped me realise how important it was for us to support each other and face each stage together.
How caring has changed over the years
As my brother grew, his physical needs changed. The care I give now is very different from when we were children. He is now at university, and for the first time he is experiencing a new level of independence. It has been so exciting to see him grow into this stage of his life.
As we both got older, our relationship also changed. It began to feel more like a “normal” brother-and-sister relationship. We go to the pub, watch movies, and hang out at events just like any other siblings our age. Spending time together like this has helped us build memories that are about fun and growing up, not just care.
But caring is still part of our lives.
“There have been times when I have had to change plans and go stay with him because his carers were ill or could not come. Moments like these remind me of the responsibility that comes with being a sibling carer.”
Even though it can be challenging, I do it because he is my brother, I love him more than anything and being there for him matters to both of us.
How it has affected our relationship
Caring has made us closer. We understand each other in a deep way because we have gone through many challenges side by side. But it has also been difficult at times. There are moments when I want to focus on my own life, studies, or friends, and I feel pulled in two directions. Even then, our bond is strong because we share trust, humour, and so many memories.
How caring affected my friendships
Being a young carer sometimes made friendships more complicated. I often had to cancel plans, leave early, or explain why I could not go out as much as other people my age. When I was younger, I worried that my friends would not understand. It sometimes felt like it was only me, or only my family, who lived this way. But that is not true.
As I got older, I learned that true friends do understand, and they care about what you are going through. When I started being more open about caring, people were able to support me better. It showed me that I was never as alone as I once thought.
What caring looks like now
Today, caring means helping my brother live his life as fully as possible. It means being his sister first and a carer second. It means balancing my studies, work, and my own goals while still being there for him. There is a love that grows in caring families, a love shaped by patience and teamwork, and that love is what carries us through each day. It is unique and special.
If you are a young carer, I want you to know this:
- Being a young carer can be tough, but it also gives you strength, empathy, and resilience and an understanding of love that some people may never experience in this lifetime.
- You are doing an important and meaningful role.
- You deserve support, rest, and understanding.
- It is also okay to have your own dreams and to follow them.
Are you a carer?
Access a wide range of support and information for parents and carers of those with muscle wasting and weakening conditions.
