I’ve been a sibling carer for my non-verbal autistic and epileptic twin brother my entire life. Yet, I only labelled myself a ‘carer’ at the age of 23, just two years ago.
I found out I was a carer in the midst of the pandemic, a time where like many, I was riddled with fear over the health of my vulnerable family members. At the same time, my mum’s health suddenly declined, her treatment was delayed and we lost essential care for her and my brother.
As I live at home and have no other siblings, I supported my dad, filling in with the care whilst balancing this with my first full time job, adjusting to working from home, my own hobbies and social life, all while my mum was shielding. Sadly, our mum passed in November 2020.
During the pandemic, people were experiencing that feeling of uncertainty for the first time. We’d been hit by a virus we knew little about, all of our lives changed and everything familiar stopped. But for me, it was multiplied and I felt angry.
Because of my brother’s needs, we deal with uncertainty every single day, I’ve never known a life different. My brother will never be self-sufficient, he can’t tell us if something is wrong and I don’t know when his next meltdown or seizure will be. Our routines revolve around him, sometimes we need to leave a supermarket mid-way through shopping or leave a family gathering early. Yet it was difficult to see memes where people complained about not being able to do certain things and their lives being uncertain for this limited period of time.
As my brother was exempt from a mask, I was committed to doing everything I could to protect him and those around me. We needed a vaccine but it was taking time. Yet still, I was going to wait my turn, just like everyone else, even if my age group were far down the list, because that’s what I thought I needed to do. The truth was, I wasn’t like ‘everyone else’.
A distant relative encouraged me to enquire about getting a vaccine early. I thought, “Why would I be entitled to that?” My parents are my brother’s carers, not me. But when I enquired, I was told I could get one, because I was caring. This changed everything. I was a validated as a carer.
Suddenly, the penny dropped and I reflected on my life. I had never been sat down and told I was a carer, I now realised how much my unpaid caring responsibilities had shaped it – my childhood, education, friendships, self-care and career.
Being validated as a carer is everything. It’s essential to understanding yourself. So many of us don’t recognise we’re carers and that’s problematic. Carers can come in many different forms and you can even be a carer from a distance.
From a young age, I helped with small tasks like getting my brother’s shoes and coat on, to later watching him when my parents were out. I never thought of this as caring though, just simply helping out.
Since my mum’s passing, I’ve taken on more responsibility as someone always needs to be at home with my brother, either myself or my dad. And I know that my responsibilities are yet to increase.
When I’m not caring, people assume the worry stops, they ask what will happen in the future as if it’s never crossed my mind. Really, it’s something I think about almost every day.
As an adult, I now realise I was entitled to support I’d never had and that there are charities and organisations out there, like Sibs, to guide me through it all. I just never knew to look for them.
You can be surrounded by a huge network of family, friends and colleagues but still feel alone when they don’t understand you.
When your only sibling is disabled, you can feel like an ‘only child’. You watch other siblings talking to each other, playing together or helping around the house and that’s tough when your relationship doesn’t look the same. Sometimes you overcompensate and try to do and achieve more. I now know so many others have the same worries and are making the same difficult decisions.
At 15 when my brother started having epileptic seizures, a paramedic told me to ring a friend after she left. People forget it’s traumatic to see. I never rang anyone though, I felt they wouldn’t know what to say.
Above: Sibling carer, Monica
Looking back, I know I’ve had a tendency to over-explain and over-justify my decisions. Things like going to a local university and moving back home when I graduated and started my first job. That’s come from a place of being misunderstood. My parents never asked me to do these things but as a sibling carer, you want to.
That’s why organisations like Sibs, (the only UK charity supporting siblings of disabled brothers and sisters) are so important. It’s that feeling someone can relate to you.
Whilst I have always been passionate about spreading awareness of autism and have done on social media, at school, university and work, I have never really spoken from a perspective as a carer.
Perhaps some of this is down to culture. As a member of the Asian community, I know there is a lack of understanding and representation of disability and caring. There seems to be an ingrained need to ‘be strong’, ‘hide’ disability and to ‘just get on with it’. It’s also normal for girls to help out more around the house, so to others, I was seen as no different.
In a way, it made me fearful of talking openly about my caring responsibilities, in case they were viewed as a weakness or made me seem unreliable. But who is this really helping? All of this only normalised my responsibilities, leading to unhealthy comparisons.
I now realise my caring responsibilities are my superpower. Recognising this and how misunderstood carers are was my light bulb moment and what sparked Carers with Dreams, my Instagram community dedicated to helping carers feel better understood, not just by themselves but also by those closest to them and inspired to achieve their career dreams.
If there’s one thing us carers are good at it’s putting ourselves second. One time, I was talking about the future with a friend who also has an autistic brother. I talked about having my own place and my career plans. All of this however, was shaped around my brother’s needs. She stopped me mid-way and asked, “But, what do YOU want Monica?”
I want to remind carers not to forget themselves and to chase their career dreams. I’m also using my platform to be a face for ethnicity minority carers and spread awareness of autism because without talking, there is no awareness.
In essence, I created the community I needed, a place where I could connect with other carers, particularly those who looked like me, those who don’t know they’re carers and those with big career dreams.
This idea had been brewing since 2020 and I know it took me some time to start. Some of it was confidence, some of it was grief, and some of it was time. There’s an assumption that my generation have the least responsibility. Many of us are not married and are child-free so we can supposedly use this ‘free time’ to start side hustles, TikTok accounts and online communities. But carers my age often find themselves on a hamster wheel, trying to keep up with others, forgetting how much we’re already carrying. We sometimes need extra time but that doesn’t mean we can’t be successful.
It’s hard to watch others live your dream and do the things you want to do but my advice to other sibling carers would be this – celebrate others and trust that your time will come. Mine did.
Starting Carers with Dreams has not only given me a healthy outlet but it’s also allowed me to adopt a positive perspective.
Rather than asking, why me, why did I get the autistic twin? I view my brother as the most incredible gift from my mum – my power to help to others and make a difference.
When I talk about my brother’s autism and my caring responsibilities, people say they can’t imagine what it’s like or understand. They say you have an ‘old head on young shoulders’. Even close relatives don’t know every aspect. But whoever you are, to everyone reading this, you can do one simple thing to help us carers – listen and show empathy. I’ve found it’s more of a case of who’s willing to take that time to learn and do better.