Young Carers Story, Lydia

Lydia’s Carers Story in her own words

My name is Lydia and I have been a Young Carer since I was five years old. Being a carer has made me who I am; yes, it brings you a lot of challenges over time, but it ultimately is a part of me and one I couldn’t imagine living without. Over the years you gain a lot of support and advice to help you prepare for any possible situations you face within your caring role, but nothing prepares you for being a Young Carer during a global pandemic.

I am a Young Carer for my brother, Tomasz. He is 14 years old and he has epilepsy, a learning disability, ADHD and autistic traits. We must remember that even though he looks like a normal 14-year-old boy with no physical disability his current mental ability and understanding is the same as a typical 6-year-old. At the age of 12 Tomasz started having epileptic fits and it wasn’t unusual for an ambulance to be at my house or for Tomasz to go to hospital struggling to breathe.

My carer role summarized involves ensuring my brother’s safety both at home and out in public, taking him out places to keep him occupied and teach him day to day life skills and allowing my parents to get a break. I also must ensure he understands the rules of society we are taught at a young age, e.g. “don’t talk to strangers” but making exceptions to these rules at certain times.

Furthermore, I must be aware of his medical needs and confidently apply my skills and knowledge in emergencies, often leading to many sleepless nights staying up in his room in case he needs help or stops breathing during his seizures.

On top of this I also have a 10-year-old brother who is currently lacking full understanding of all of Tomasz’s conditions and the allowances we must make. This means I am also a support to him trying to give him the understanding about our brother’s conditions but also trying to help him live the most “normal” life. As you can imagine even the simple tasks of watching a family film or playing a board game together are near to impossible without it being stressful.

I have been through a lot in my life; the first major event was when I was just 4 years old, my brother Tomasz was two years old, and he had Meningococcal Septicemia (when the bacteria enter the bloodstream and multiply, damaging the walls of the blood vessels causing bleeding into the skin and organs). The doctors only just managed to save his life and he recovered. I didn’t fully understand at the time, but I still remember the fear in my parents faces as I was rushed in a taxi with my mum to go to the hospital to meet my dad and brother.

Growing up I was constantly bullied from the age of around 5 or 6, being timid, having no confidence in myself and feeling like I never fit in, I didn’t have the confidence to talk about the bullying so always bottled my emotions up. I managed to cope well enough until in year 5 at the age of 10 I started self-harming as a coping method.

When I joined secondary school, it took a big impact on my physical health; the first week of year 7 I fell down the stairs and remained on crutches on and off for the next four years with the support of physio and hydrotherapy. Back in year 7 I was referred to Solar for my mental health, but it never really helped me as from a young age I struggled to open up and talk about my emotions. More and more people in my year then found out about my brother as I continued to go through the years of secondary school and instead of people being understanding of my issues, the bullying continued; this included people mimicking my self-harm with razor blades and resulted in the school not letting me have access to anything sharp for my own safety as I started to self-harm in my lessons sat at the back wishing I wasn’t there. I still felt like I didn’t fit in with anyone and I still refused to open up to my parents and health workers. For the next few years I would put on a brave face pretending to be someone I wasn’t; I was just trying to be happy, normal teenager and destroy my suicidal thoughts.

From year 7 onwards my anxiety increased as did my stress with being behind on school work, being on crutches and feeling like I had no independence, struggling to sleep (and being happy if I was able to get even close to 6 hours), but also still having to put on a brave face at home and continue with my role as a carer and a big sister for my brothers and trying to be the “perfect daughter” for my parents. As I have grown up people ask me “how do you manage to stay so strong with everything going on in your life?” but the truth is I don’t always.

Over the past few years my mental health has dramatically got better as I realized that the only reason people judge me is because they are “judging a book by its cover” and as soon as I opened up about my story in year 11 at school people automatically gained respect for me, treated me so differently and apologized for their previous actions and words over 5 years towards me which even though I was grateful for, it shouldn’t have taken that for people to offer me help when I’m feeling down and just to be nice about someone going through a tough time.

Coronavirus has changed our family for the better. I never thought I would say living through this pandemic is one of the best things that has happened to me in years. Currently, I am 16 years old in year 11 and so was due to take my GCSE’s however, Coronavirus has meant I don’t have to complete the exams which has lifted a massive weight off my shoulders. I am not stressing as much anymore, and I am so much happier to be able to spend time at home with my family and create a stronger bond with them all. I still have anxiety over what will come next for me in college, but I am trying to deal with that obstacle when it comes to it. During lockdown, I have been struggling to sleep but due to different school hours I am able to sleep in until mid-day or whenever Tomasz decides that I need to get up and he wakes me up. Some days that I am awake early I will help my brothers with their schoolwork, but it is stressful for me as I struggle with having the patience that is needed to support Tomasz. I end up taking Tomasz out on walks, so he can get out the house and enables my parents to get a break.

I want to spread awareness of Young Carers because even though we are not as easily seen we are still here and deserve to be heard. This is only a short insight into my life and there is so many other stories of teenagers like me who have a hard life and try to put it behind them and try as hard as possible to be a “normal child”.

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