How to feel seen and heard as a carer

With special thanks to carer, author, and mental health activist Matthew McKenzie, who joined us for a Mobilise: LIVE event. In the session, Matthew unpacked why advocating for ourselves as carers matters and how we can start small, build confidence, and begin asking for what we need. This blog captures some of the key moments from the event.

Advocacy (in this context) is all about speaking up for ourselves and expressing what we need as an unpaid carer. If we want to learn more about advocacy before we dive in, we might want to read the Carer’s guide to Advocacy first. 

Why is advocacy important when caring 

Whether we’re new to caring or several years in, speaking up for and advocating for ourselves can be one of the hardest things to do. Sometimes we don’t have the words. Other times, we might just be too tired or made to feel like we’re not even allowed to ask. But it’s important for us to speak up for ourselves and our needs.

The work that goes into looking after a family member or friend often happens behind closed doors, leaving many of us feeling invisible and unheard. This invisibility can lead to burnout, isolation, and missed opportunities for support. As Matthew highlighted, recognition starts from within. Acknowledging our role as a carer isn't about labels, but it's about unlocking the resources, support and exercising the rights we have as people who care.

"It’s a bit of a catch-22" - Matthew McKenzie

Here are some key takeaways from the session and practical ways we can begin advocating for ourselves.

How we can advocate for ourselves when caring?

1. Increasing our visibility when caring 

When we're caring for someone, much of what we do can go unnoticed even by those closest to us. The sleepless nights, the constant coordination, the quiet vigilance, it often happens behind closed doors. Over time, this invisibility might start to erode our sense of self and lead to feelings of loneliness, frustration, and even burnout.

There might also be stigma surrounding our caring situation. Caring might not be acknowledged in our culture, or even within our own families. It might just be perceived by others as ‘our job’, especially if we’re caring for family, and so the complexity and challenges we face when caring can be dismissed or minimised easily. 

“It can be tricky if you’re coming from a different culture because some cultures don’t really want to talk about it, some cultures don’t even have a word for caring.” - Matthew McKenzie

We might also face unconscious bias if we’re from a marginalised background. For example, being an LGBTQ+ carer, from a travelling community, or being from an ethnically marginalised community. This bias, compounded with our caring role, can contribute to the invisibility and isolation we experience, making it harder for us to be recognised and access support. If that’s the case, it can feel like we’re carrying even more weight, with extra layers of complexity to navigate. 

We might also notice there's a stigma surrounding our cared-for's condition. For instance, if the person we care for is in a mental health crisis, others may not understand, may judge us, or may quietly step away. We might be made to feel ashamed, isolated, or like we’re doing something wrong, simply because we’re supporting someone in deep distress. 

Sometimes, we’re faced with incredibly difficult decisions, doing things that the person we care for may not understand or agree with in the moment. We might have to prioritise safety, even if it means they feel hurt or resent us for it. That emotional weight and impact on our relationships can be heavy, especially when we’re acting out of love, protection, and necessity. It’s a part of caring that often goes unseen, but it matters, and it takes real courage.

Matthew shared some of his own experience when he had to make the difficult decision to get his Mum sectioned to protect himself, his brother and his Mum.

“We might notice our relationships start to break down. I felt that Mum was a danger to herself and my brothers, who have non-verbal autism and that can cause relationship breakdown. Because of that, It made me think, am I doing the right thing? Is my Mum beginning to hate me? Should I have held off? What do I say at the inpatient ward meetings? When recognition came through and I had a stronger sense of identity, I felt more at ease with myself.” - Matthew McKenzie

This kind of emotional toll on us is rarely acknowledged, but it’s real, and if we’re not recognised as carers, then these experiences can easily go unsupported, which can be harmful for us and in some cases, the person we care for too.

When the invisibility of caring is paired with certain stigmas, it can make it even harder to ask for help. It might even stop us from identifying as a carer at all but recognising our role doesn’t mean we’re labelling ourselves forever. It simply means acknowledging that what we do is real, it’s valid, and it’s deserving of support. When we can name it, we can start to claim the space and resources that help us keep going.

2. Increasing our visibility when caring 

"There might be a situation when you need to make decisions very fast, otherwise the health and social care services will make that decision. You've got to learn your rights" - Matthew McKenzie

Accepting our role, even if reluctantly, can be a powerful step toward visibility, support, and validation that what we do matters. It helps us shift from surviving in silence to knowing we are part of a wider community of people facing similar challenges when caring.

Once we begin to identify as a carer, we can register with our GP, who may be able to offer more flexible appointments, health checks, or simply take our role into account when managing the health of the person we care for.

If we're working, telling our employer can make a big difference. Some workplaces offer carers’ leave, flexible hours, or additional support.

Crucially, recognising ourselves as carers also gives us access to rights and entitlements under legislation like the Care Act 2014, The Carers (Scotland) Act 2016 and the Health and Social Care Act 2022. These legal protections mean that local authorities must consider our needs through a Carer’s Assessment, which can result in tailored support, services, and sometimes financial benefits too.

"You do have rights as a carer, you have entitlements. It's not easy, it can be overwhelming, but it's important not to sit quietly and speak up. Your voice matters" - Matthew McKenzie

Exercising our rights isn’t about asking for special treatment, but getting the support we deserve so we can continue to provide care in a system that relies heavily on the role of unpaid carers. We can learn more about our rights in 'Carers' Rights and the Law'. 

3. Building our support network

As Matthew shared, one of the most painful parts of caring can be the isolation. When we're managing someone else's needs around the clock, especially during crises, it can feel like no one else sees what we're carrying, physically and mentally. That feeling of loneliness isn’t always about not having people around, but sometimes it's the feeling of not being understood.

That’s why actively building a support network can be transformative for us. Connecting with our local carer organisations is a great first step. Whether we attend a drop-in session, have a call with them, or get practical support, our local support group can take some of the pressure off. We can use this nifty tool to find our local carer support organisation here.

"Identify yourself if you can, so you can be referred to support groups.”  - Matthew Mckenzie

Equally important, as Matthew reminded us, is peer support. Finding a space where people just get it without explanation, where we don’t need to justify our feelings or downplay our exhaustion, can make a big difference. Matthew reflected on how powerful it can be just to read someone else’s words and think,

“Yes. That’s exactly how I feel, too.” - Matthew Mckenzie

If we do want to connect with other carers, we might consider joining the Mobilise Hub, a free online community of over 10,000 carers from across the country.

4. Setting boundaries and looking after ourselves too 

One of the hardest, but most vital parts of caring is learning to set boundaries. As Matthew explored, we might find ourselves growing into a caring role gradually, but we often don't realise how much we’re doing until we’re already running on empty. 

“I think it’s very common for those providing forms of care. People just don’t know. They just got on with it. It might be a duty of love but people don’t know they're carers until there’s a crisis and people see that you're struggling. I got the shock of my life when my carer centre kept saying ‘you’re a carer’.” - Matthew Mckenzie

When someone we love is in crisis, it can feel impossible to step back. However, if we don’t find ways to protect our well-being, we risk burning out completely. To learn more about how we can prevent burnout or what to do if we are experiencing it, we can read more about it in ‘Healing and recovery after a caring crisis’.

Though it might take time, knowing the signs that we're about to hit our limit can give us time to arrange a small break for ourselves, whether that be through respite or doing something small to de-stress, even if just for a short moment.

Even setting small boundaries could help us to preserve our energy when we need it the most. 

“Another tricky one is setting healthy boundaries to protect yourself, not just your energy. You will be asked a lot of you even your loved one because they don’t always have the insights of their condition. They might ask more of you than you should give. It’s important to protect yourself” - Matthew McKenzie

Journaling can also be a small act we can take to preserve our energy, but also a great practical tool for advocacy. Writing things down about conversations we've had with professionals, appointment dates, medication changes, or moments that felt unfair can be empowering. It’s not just about journaling to process our emotions (though it helps with that too); it’s a way of building a record of our experience if we ever need to raise concerns or fight for better care.

5. Finding our voice and sharing our story with others 

It can feel difficult to speak up, especially when we’re already exhausted or overwhelmed, but gradually, and often with support from others, we might start to realise that advocating for ourselves and sharing our experiences is not just important but necessary to create change. 

This might be calmly asserting ourselves when something doesn’t feel right in an appointment, or following up with a written complaint if we feel dismissed. It might be about preparing in advance for meetings, writing down what we want to say, or even rehearsing difficult conversations so that we’re ready to push for what we need. 

Raising our concerns or challenging something can feel daunting, but it is a valid and sometimes essential step in ensuring our voice is heard. We deserve to be involved in decisions that affect us, and sometimes we have to be persistent to make sure that happens.

There is also power in sharing our experiences with others, too. Speaking out about our experiences can be incredibly validating, not just for us, but for the people we’re sharing with. It helps to create an environment in which opening up and talking about our lived experience is normalised and helps us, and others, feel more visible when caring. 

For some of us, this act of speaking out might grow into something bigger. We might choose to write to our MP and share our experience of being a carer. As Matthew reminded us during the event, professionals and commissioners shouldn’t be left to guess what carers go through. 

"Do put your MP on the spot every so often and ask what they're doing for carers. Depending on our area, there must be thousands of unpaid carers. Email your MP, especially if they have a carer partnership board, we might ask what our MP knows about them?" - Matthew McKenzie

Our experiences are vital in encouraging more inclusive services and policies that can impact  us. Even small acts of sharing can ripple outward and lead to change, encouraging others to do the same and building momentum for a system that better understands and values carers.

We don’t have to be loud, or perfect, or political. We can just be honest about our experience and share in whatever way feels right to us.

One thing we can try today

A practical first step in gaining recognition for our role is to request a Carer’s Assessment. Assessments can lead to additional help with respite, financial help, or practical support, all of which can make a massive difference. If we need help with understanding the application process, we can read the ‘carer’s guide to a care needs assessment’.

Thinking about all the ways we could start to advocate for ourselves might feel overwhelming, but even starting to think about how we can better advocate for ourselves can be a great first step. 

Small steps matter, whether it's preparing for a GP appointment or simply seeking understanding from professionals. When we take even tiny actions, our collective voice as carers grows stronger, gradually shifting how society recognises and values the essential work we do and paves the way for future carers.

Where can we find more from Matthew?

Matthew is a carer, author, and mental health activist who is passionate about amplifying the voices of unpaid carers. He cared for his mother for many years and continues to support his two brothers. His voluntary work and continuing drive to improve the lives of unpaid carers have also been recognised with a British Empire Medal in the King's New Year Honours 2024.  

He is the Carer Ambassador and Patient Carer Race Equality Carer Lead for Cygnet, which provides medical and social care across the country. Matthew also volunteers regularly with Carers UK and is the Chair of the Triangle of Care Community Group for Carers Trust, where he uses his lived experience to help others. 

Matthew has also shared his poetry and has a range of books about caring, including ‘A Caring Mind’ (2020) and ‘Telling Your Story as a Mental Health Carer’ (2025), and he’s been featured in Caring magazine.

He strives to use his lived experience to connect carers with one another to help create safe peer support networks and champions the visibility of carers. We can find more of Matthew’s work in his A Caring Mind blog and his YouTube channel, Caring Minds.  

Other resources that could help us 

Join the Mobilise Hub 💌

Join the Mobilise Hub today to get support and advice from other carers going through the same thing, or share what’s helped us. 

Find your local carer services 🔎

If we want to find more local support, we can use this handy tool to find what care services are available in our area.

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