‘Realising I was a carer changed everything. I was validated’

Below is an edited essay, Finding out I was a Carer Was My Light Bulb Moment,  from the Sibs publication Autism: the Sibling Perspective

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 when, like many, I was riddled with fear over the health of vulnerable family members. 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 while 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 midway through shopping or leave a family gathering early.

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 having to wear a mask, I was committed to doing everything I could to protect him and those around me.

Vaccination was taking time. Yet still, I was going to wait my turn, like everyone else, even if my age group was far down the list, because that’s what I thought I needed to do. The truth was I wasn’t like “everyone else”.

A 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 I was told I could get one because I was caring. This changed everything. I was validated as a carer.

Our routines revolve around him; sometimes, we need to leave a supermarket midway through shopping or leave a family gathering early.

This validation is 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.

I’m using my platform to be a face for ethnic minority carers and spread awareness of autism because, without talking, there is no awareness. Starting the Instagram community Carers with Dreams has not only given me a healthy outlet but also allowed me to adopt a positive perspective.

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.

When I talk about my brother’s autism and my caring responsibilities, people say they can’t imagine what it’s like or understand.

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.

Monica, the founder of Carers with Dreams, writes using a pen name