When Love Becomes Advocacy

As Carers Week prompts conversations about supporting unpaid carers, I’ve found myself reflecting on something that has touched both my professional and personal life recently: advocacy.

And more specifically, what it feels like when advocacy is not a professional role, but something you find yourself doing because you care.

Over this last week I’ve found myself in tears, but even that word doesn’t really capture it.

It wasn’t just sadness. It wasn’t something that could be neatly named.

Underneath it was frustration. And underneath that was a kind of anger that I didn’t fully have anywhere to put.

I felt like I wanted to scream, but not being able to.

Whilst it wasn’t a single moment, it was an accumulation of many recent moments where systems can feel so difficult to navigate when you are trying to get the right support for someone who matters deeply to you.

What has stayed with me since then is not just the emotion itself, but what triggered it.

I have recently found myself in several personal situations where I am advocating for someone I love. Trying to make sense of processes. Asking questions. Following up. Seeking clarity. Trying to ensure that their voice is heard and that the right support is in place.

And what struck me most is how hard I find it at times.

Because professionally, I have spent years supporting people living with dementia and the families around them. I sit alongside carers in different ways, listening, coordinating, explaining, signposting and often helping to navigate systems that can feel overwhelming when you’re already stretched beyond capacity.

Over time, I have built up skills that I rely on: communication, persistence, coordination, relationship-building, knowing where to look and who to ask, and how to keep going when things feel stuck.

So when I say I felt frustrated, it wasn’t because I didn’t know what I was doing. It was because I could see so clearly how hard it still is, even when you do know.

That is what unsettled me the most.

If I, with all those skills and experience, can feel that level of exhaustion and frustration, what must it feel like for carers who are already running on empty?

Most people don’t set out to become advocates.

They don’t wake up one day and decide to take on systems, services, assessments, phone calls and processes.

They start as partners, spouses, children, friends, neighbours.

People who care.

People who want to help.

But slowly, often without realising it, many find themselves stepping into advocacy roles as well.

Advocacy takes many forms.

Sometimes it is asking the same question more than once because you haven’t had an answer.

Sometimes it is challenging a decision that doesn’t feel right.

Sometimes it is sitting in meetings and trying to make sense of unfamiliar language and processes.

Sometimes it is noticing when something isn’t right and refusing to let it be ignored.

And sometimes it is simply persisting, quietly, consistently and often invisibly, because you cannot bring yourself to give up on someone you love.

Not all caring relationships are the same. Some are rooted in lifelong love, some in friendship, some in family ties, and some in a deep sense of responsibility or duty. But across all of them, I have seen how often caring naturally leads into advocacy.

Because caring, in itself, makes you notice. And noticing often leads to speaking up.

What I have also learned over the years is that carers are doing far more than is often recognised.

Alongside the emotional weight of watching someone change, they are also managing appointments, coordinating care, handling communication between services, dealing with practical responsibilities, and holding together an enormous amount of invisible work.

And yet, access to support can sometimes depend on something carers are already short of: time, energy, confidence, and emotional capacity.

That doesn’t sit comfortably with me.

When love becomes advocacy, it is not always straightforward.

It can be emotionally exhausting.

It can bring frustration to the surface.

It can bring people to tears.

From not wanting someone to be overlooked.

From not wanting something important to be missed.

From wanting things to be better than they are.

This week, I find myself holding two things at once.

Deep respect for the carers I meet in my professional life, and a very real personal understanding of what it feels like to be trying to navigate systems on behalf of someone you care about.

Advocacy is not just a professional skill or a service we provide. It is something that emerges when we care enough not to walk away. Because caring for someone should not require becoming an expert in how to be heard.

And no one should have to feel like they need to scream into a system just to get support.

Gina Awad

Dementia Companion | Advocate | Author | Life Celebrant