Hi, my name is Skye and throughout my teenage years I was a young carer to my younger sister who has a rare genetic disorder. Now I am at university, I’m going to share my experience as a young carer to hopefully bring more awareness and give others some insight into my experience.
About my sister
As mentioned before my sister has a rare genetic disorder, this is called 16p11.2 microduplication, a duplication of the 16th chromosome. This causes several symptoms but shows itself differently in each person. For my sister it means she has severe epilepsy, low muscle tone (hypotonia), global development delay and other learning disabilities. She uses a wheelchair when out and about, and has limited mobility. As a toddler she struggled to hit major milestones like walking and talking, and had her first seizure at 2 years of age. And it was around the age of 14 that I became her carer, as she needs lots of support doing most things.
A carer at 14
As a young carer I did most everyday things with her. Simple tasks that may not be tricky for others can be hard for her, especially self-care. I helped her eat, wash, brush her teeth, get her dressed, take medication and so on. I also took her to the local brownies group and got her involved in activities and helped her have fun on family days out. Essentially anything she did, I did with her.
Needless to say, being a young carer comes with its challenges, there can be many things that are tricky to navigate aside from the care itself. For me, the constant responsibility of looking after someone else meant I found having a social life outside of school hard. I didn’t have the time go out like my peers and most of my decisions were with my sister in mind. This meant the times I did see my friends, I often felt guilty. I wanted the freedom to go out and socialize whenever I felt.
Juggling the expectations of school was also an obstacle. Going to school and then coming back to take care of someone was exhausting and also time consuming. I really wanted to do well academically, but it felt a lot harder to practically accomplish this, as there was no time for studying and not all of the teachers were aware of my situation. However, the main challenge for me being a carer was that is was non-stop. Caring for someone is hard work but as a young carer you often don’t get much of break, there’s no finishing for the night or annual leave, like you would find in most places of work.
Time to celebrate!
Despite the trials and tribulations of being a young carer there are many things I celebrate.
Being a young carer has given me some invaluable traits, I have learnt to be empathetic and patient with people, especially in difficult situations. There may be things that someone else finds extremely difficult that I might not, and that it’s important to take time to show compassion.
Another instance that I massively celebrate is going to university. Being able to achieve the grades I wished for alongside caring responsibilities and a global pandemic is something I’m undeniably proud of. There were many reasons why deciding to go to university was hard for me, a big one being feeling guilty. Although I was lucky enough to have the support if my family, I still felt very guilty deciding to go, leaving felt like a selfish decision as I knew my help was relied on.
However, since going to university I’ve come to understand that there are other ways I can help and support my family. And above all else being a young carer has brought me closer to my sister, as I spent so much time with her. Caring can be as simple as helping her eat or as serious as administering emergency medication. With this nuance there is room for everyday fun, like dressing up, going to the park, having wheelchair races, and these moments help dilute the hard ones.
Support for carers is basic but essential
Often the support carers receive is basic, but this doesn’t always mean it is ineffective. For me having a teacher aware of my situation helped ease worries around schoolwork and deadlines was helpful. I knew that I could go to this teacher and ask for extra help on an assignment or ask for an extension if I needed it, this let me put my best foot forward in terms of exams because I was given the time and space to work hard. But also having a role model who believes in you and is there to remind you that you can do it even if you have to juggle a lot was massive for me especially when sitting exams and applying for uni.
Although this sounds relatively simple, I did find really it helped at school. I was also lucky enough to be offered free boxing lessons by a programme set up for vulnerable young people. Having this break from school and caring to just have fun was massively beneficial. It was an outlet for me to release any worries and any stress I was feeling, it was something I grew to look forward to every week and meant I had dedicated time to relax.
Sometimes traditional support provided like support groups can be really helpful and life changing for young carers to relate to others in the same situation but for me speaking about it was something I wasn’t interested in doing. Having an alternative, more physical outlet where I could have fun in a cathartic way was best for me.
On a bigger scale, the support provided for young carers could be as simple as raising awareness, having teachers and professionals more aware to allow for more funding for programmes like the boxing one I got to experience. In addition, opening the conversation around young carers can help direct young carers to the right resources and places to access support as for a long time I wasn’t even aware that I was a young carer and that I could access support for myself.
Ultimately, I feel it is important young carers get the opportunity to share their experiences, not only because being a carer can be emotionally tough but also because it’s important that people are aware of the work of young carers and know how to support them. I hope this blog was insightful, every young carer experience is different, but this is mine. Going forward I hope we can open the conversation around young carers and what they do.
Skye is 19 years old, studying Psychology at University in the UK. She hopes in the future to become a clinical psychologist.