I *deeply* resent the amount of time I waste making other people comfortable with Nenna's condition and to a lesser extent, the stress related siezures I have started having. People ask what's wrong with Nenna - tactfully, usually, things like 'What exactly is her condition?' or less often 'What's wrong with her, exactly?' And then when I tell them that she has an un-diagnosed but still life-limiting progressive neuromuscular condition, they freak out and stay the first thing that pops up from their hind brain like 'Oh, but she's clearly still really happy' or 'I wouldn't cope in your situation'. Both of which are bloody stupid things to come out with, really. I end up agreeing with the first one - 'Yes, she's so cheerful all the time, such a trooper' and saying 'I'm sure you'd be fine' to the second. And I've lost count of the number of people who are freaked out by her button/tube for feeding, or the fact that she dribbles a bit now when she's tired, or that she squeaks unrecognisable sounds as she's signing that some people find embarrassing.
It's exhausting managing everyone else's emotions when I have so fucking many of them myself and no readily available outlet because B and I HAVE to keep it together, otherwise the wheels fall off the wagon.
I am also deeply pissed off at the 'friends' who have dumped us as a family, apparently since I've started having the siezures. Nicer friends have come along to replace them. But really?
I was speaking to a recently bereaved friend yesterday, who said that she is in the same position - for example, her neighbour finds the contents of her handbag fascinating whenever their paths cross rather than saying anything. I completely get that people don't know what to say or don't know how to respond when you mention things that are to you, completely normal - nappy changes, feeding, dodgy nights lying awake listening to the rhythm of her breathing and wondering whether you need to call an ambulance. Sobbing in the small hours because you just don't know how you're going to get up to face the day. Joking about having a siezure in Paediatrics for a couple of hours because everyone got overexcited and wouldn't let you lie quietly and get over it, but shipped you off to A&E on a gurney.
What can we do except normalise these things? Or deflect using black humour?
It's not our job to make other people feel better about things, though. It's their job to make US feel better. Or at least, no worse. Otherwise they can bog off. I am thinking about certain close family members here - one in particular stood by Nenna's incubator wringing their hands and declaiming 'Oooooh, the poor little mite', which was a genuine and unexpected return to Dickensian grandparenting that came way out of left field.
So, what CAN you say, and/or do? As the linked article says, comfort and support " ... say, “I’m sorry” or “This must really be hard for you” or “Can I bring you a pot roast?” ... ".
Don't bang on about how awful the situation is and how you are sure they are having a dreadful time and you certainly wouldn't be able to cope. Don't repeatedly express your horror at how ill someone looks. Don't talk about how bad you feel.
Make space for them to talk to you if they want to and if they don't, help them talk about or do something normal. Offer to help tidy their tupperware cupboard or clean the carpet/change the sheets where the child has thrown up. Don't give them cake or booze. Cake and booze are lovely, don't get me wrong. But something they can chuck in the freezer and defrost as an actual meal is more help.
Listen. Listen listen listen. Be mindful of their emotional and physical space. And then when you need to, turn to the next ring out, and dump your emotion and horror and sense of loss on them.
This is how it works. We're all in interlocking circles all the time, at various different levels. Think about where you are in each one and act accordingly.