You know that quote by the former boxer Mike Tyson? He said: ‘Everyone has a plan until they get punched in the face.” I’ve been thinking a lot about that over the last few weeks.

I’ve been struggling recently (more than my usual baseline that would send most not-yet-carers to seek medical help immediately); with a feeling of being misunderstood.

It feels like a lot of the people around me (digitally, obvs) are questioning my decisions or feelings. It’s difficult to describe, maybe I don’t mean questioning, I feel like their advice or reactions are rooted in the fact they simply don’t or can’t understand the situation I’m in. It is so frustrating and contributes to my already-crushing isolation and loneliness.

To be clear, and fair to the people who still bother to answer my texts, I’m grateful for their interest and I’m not adverse to receiving advice – in fact, I often ask for it. But lately, it feels like I’m speaking a different language to all the non-carer people in my life.

As a carer, I don’t matter. Don’t roll your eyes. It is confronting, I know, but true. I only matter in relation to the person I care for, that is unimaginable to people who aren’t yet carers, and who – rightly- have at least some level control over their lives. I mean basic things, like eating or sleeping when they want to or being able to plan a trip or meeting up with a friend, for example. Those basic things require meticulous planning or are mostly impossible for carers- yes, even eating – I regularly don’t have time to feed myself in between caring for my grandmother and work.

Because of this, on the rare occasions I’m able to do what I want (usually in very restricted circumstances) I’m insistent about it. Because, damn it, I am allowed to express what I feel and want. I don’t want or need your opinion on how I’m feeling or why I feel it. I just need you to listen, and importantly, believe me.

A recent short film from the University of Birmingham on the struggles of parent carers, highlights this feeling of being invisible, misunderstood and so alone. I think many other carers can relate to the heart-wrenching testimonies. As said in the film: ‘we don’t need you to pity us -we need you to believe us‘.

To go back to Mike’s quote, carers like me have not just been punched, they’ve been hammered by life. They live a reality you can’t fathom. All I (we?) ask is that you listen and believe us… and give your opinions/advice when we ask for it. You don’t get it. We know that. You most likely will in the future but for now – to quote the film again: ‘when we say we’re drowning, throw the damn lifeboat‘… and sit in it with us. We’ll do the same when it is your turn to care.