Darkness to light: how adversity builds resilience

June 20, 2023

Collage created by Jamie Aldridge using photographs: Grey Sky by Adam Kontor and Woman Taking Notes by Ivan Samkov both from Pexels

Jamie Aldridge describes the demands of life as a young carer and explores the skills they’ve developed

Did you grow up looking after a disabled sibling? Or have you started to look after a parent or grandparent when their health started to decline? Or perhaps you support a partner with a mental health condition? If yes, then you might be one of the 5.7 million unpaid carers living in the UK.

Unpaid carers are people who provide care and support to a child or adult with a disability. The person you care for could be anyone you know – your sibling, child, parent, partner, friend, or even a neighbour. The person you care for can have any kind of disability, such as a learning disability, autism, mental health issues, dementia, or a physical health problem.

Carers contribute so much of their time and energy for little recognition and often go under the radar; a 2023 report by the Centre for Care found that the value of unpaid care in the UK is estimated to be worth £162 billion per year. This is equivalent to the cost of a second NHS in England and Wales, which in 2020-21 received an estimated £164 billion in funding.

These figures are staggering, and show just how much care we provide every day.

I’m one of those 5.7 million myself. My brother has a learning disability and speech and language problems, and I’ve been caring for him for most of
his life.

It’s crucial to acknowledge that carer stress and burnout are real problems that affect many unpaid carers in the UK

During my childhood, I didn’t even realise I was a carer. My brother is only 16 months younger than me, so I never really knew a life that didn’t involve looking after him. When I was younger, relatives would call me his ‘little interpreter’, as he didn’t speak until he was five, and I knew what he wanted
to communicate.

As a young adult now, my brother needs support to get out and about as he can’t use public transport independently. He also needs support to communicate with others and needs help organising things, for example booking and attending medical appointments.

It’s only as I’ve got older that I’ve realised how much extra support I provide, and the stress this has put me under over the years. I don’t resent my brother at all; he isn’t responsible for my role of taking care of him. However, I’ve come to realise that the unsaid expectation that I will always be around, always be able to support him, has had a big impact on me emotionally and physically.

Although being a carer can be rewarding and fulfilling, it’s also crucial to acknowledge that carer stress and burnout are real problems that affect many unpaid carers in the UK.

The 2022 State of Caring survey, conducted by Carers UK, found that in terms of their own wellbeing, carers were most worried about feeling stressed or anxious (60%), followed by not having time to prioritise their physical and mental health (36%) and being unable to take a break from their caring role (35%).

Caring has made me more patient and has deepened my empathy and acceptance of others for which I am grateful

In the same survey, 29% of carers said they felt lonely ‘often’ or ‘always’, and carers rated their life satisfaction at an average of 4.7 out of 10, significantly lower than the UK average of 7.5.

This shows just how important it is for carers to make time for themselves and look after their own wellbeing as much as that of the person they care for. It’s clichéd but it’s true – when you’re on a plane you need to put on your own oxygen mask first before you can help anyone else. In other words, you can’t fully support other people unless you’re also looking after yourself.

Being a carer has shaped who I am and given me personal strengths and qualities I’m grateful for. Caring has made me more patient and deepened my empathy and acceptance of others. It’s even helped me professionally, as my background as an unpaid carer led me to become a paid support worker for young people with special needs; a role I found both fun and fulfilling.

I’ve learnt to deal with the challenges that come from being a carer which has built my resilience and understanding of people’s needs, and I’m open to sharing my experiences as a carer for the good of others as well as myself.

In the last few years I’ve become more aware of just how much support I provide as a carer, and how it’s getting more difficult to juggle my caring responsibilities with other commitments like work, and my own health problems. I’m working to put more boundaries in place and find alternative ways to get support as a carer.

Here are some ways you can look after your own needs as a carer:

  • Claim any benefits or financial support you’re entitled to. Carers may be eligible for Carer’s Allowance or the Carer’s Element of Universal Credit.
  • If you can’t be away from the person you care for, your council’s social care team should provide respite care so you can have time to yourself.
  • Take advantage of any schemes designed to support carers. Most carers’ centres can give you a carer’s card, which can get you free entry to exhibitions and events when you attend with the person you care for.
  • Tell your GP surgery you’re a carer. They can support you if you’re suffering with stress or anxiety as a result of your caring role.
  • Consider joining a support group. Peer supporters, people who use their own experiences to help each other, can give you a sense of community and solidarity, as they understand what you’re going through.
  • Find hobbies and interests outside your caring role. Doing something completely unconnected can help you develop your own identity and provide an outlet for any stress you might be feeling.
  • Be realistic about the amount of support you’re willing (and able) to provide. There’s no shame in admitting that you’re struggling, as being a carer is a huge responsibility.

I didn’t get any support as a young carer, but there are organisations like Carers Trust which support young carers.

There are also organisations that support specific types of carers such as Sibs, who work with people who care for a sibling, or Centre 404, who support people with a learning disability as well as their carers.