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9 October to 15 October 2020 is Baby Loss Awareness Week in the UK.

One thing you discover when you lose a baby is that, for the most part, people are incredibly kind. They offer support, opportunities to talk, baked goods, anything that you need. The most special people in your life drop literally anything to be there for you. They invite you on holiday, they remember the milestones, and they accept that a ten minute conversation might encapsulate anything from rage, to tears, to belly laughter.

Curiously, and possibly because of limitations with the English language, you also discover that many condolence messages have much in common. ‘I’m so sorry for your loss,’ ‘I don’t know what to say,’ ‘I just can’t imagine what you’re going through.’ Of course, there is nothing wrong with any of these. They are kindly and genuinely meant, and accepted as such, and at any rate there is nothing anyone can say.

Since my little girl died though, I have often thought about the phrase ‘I just can’t imagine what you’re going through.’ Partly because (to pinch material from Nora McInerny) I actually think that you can, and you should, because it could change the way you see the world. But I understand that it’s hard, and that you probably don’t want to.

It is for this reason that we need individuals with lived experience in the charity sector. Most people, if they are brutally honest with themselves, do not really want to imagine being a bereaved parent or going through the criminal justice system or being homeless, so, often they don’t. And that’s okay, but it does mean there is a need for people that have been there and done it, and therefore don’t have to imagine.

Another reason is nuance. Someone that goes so far as to imagine losing a baby might think through what it’s like to go home from a hospital empty handed. In all likelihood though, they don’t get past walking in the front door. They probably don’t think through what it means to be postpartum without a baby, where to put unused baby clothes, what’s required to organise the funeral, how one navigates a coroner’s inquest, how to register a neonatal death. Someone that has walked that path before knows about all these things, in a detail that can’t be imagined.

The third reason is having the right words. The first time I spoke with another bereaved mother the relief was enormous—it was like finally finding someone that spoke the same language. She gave it to me straight: ‘it won’t get better, ever, but you will learn how to live with it.’ Later, another mother told me: ‘I will always be here to talk about it—including in five or ten years’ time, when other people don’t want to talk about it anymore.’ I could have kissed her. But who would know to say these things if they hadn’t also endured something terrible?

Finally, individuals with lived experience are needed as role models. I was able to look at the women I spoke to, see them function like normal people, watch them engage in and even enjoy the lives they had built, and know that a good future is possible. That’s not something that reassurances from friends and family can give you.

Of my ‘lived experience’, I will say that I would do anything to give it back. It is unwanted, and it sets you apart. But it can also put you in a position to help people. It equips you with a nuanced understanding of what it really means to experience something and navigate your way through it, and it gives you the right language. Importantly, it can provide hope for the ‘service users’ behind you, so they can look at you and see that there is a future out there for them—even if it is not the future they wanted.

Here's why we need lived experience in the charity sector. A blog for #BLAW2020 from @NPCthinks: Click To Tweet

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