As we all know, I’ve been stumbling through life a bit pathetically over the past few months, after my internal organs started trying to kill me. They probably won’t succeed, because they haven’t succeeded any other time they’ve tried and because I’m getting treatment, but in the meantime I’m pretty much housebound, except for occasional trips to the supermarket at the end of the road on days when I have enough energy to walk there.
Yesterday was one of those days (yay!) and I went to buy some washing up sponges and some pears. Now that I can sometimes eat successfully, I am experimenting with different foods. So far most non-citrus fruits seem to be OK most of the time (double yay).
On my way there I bumped into a friend whom I haven’t seen since just before I got ill. We had a brief conversation, then he went on his way, I did my shopping and came home. On the way back I realised that his reaction has been a textbook example of the best way to act when someone you know is seriously ill. I know it’s a subject that’s understandably difficult for a lot of people – what should I say? when should I say it? is it OK to ask stuff? – so I thought I’d use him as an example and write a post about it.
A couple of caveats before I start:
- Everyone is different. I am especially antisocial at the best of times, for example, so some people might want more communication than me. However, there’s a limit (I think?) on how much attention most people will want from acquaintances / friends they don’t see often, which is whom this post is aimed at. If you’re really close friends with someone, you probably know them well enough to have some kind of idea what they might want from you.
- Speaking of which… if you’re one of my BFFs and you’re reading this post, obviously this advice doesn’t apply to you. My close friends have all been great throughout this whole angry-internal-organs phase, so just keep doing what you’re doing.
- Although everyone is different, the points under the heading “What He Didn’t Do” seem to be pretty universal, at least from what I’ve read online from other people going through similar situations. So if you take nothing else away from this post, try to steer clear of these.
Without further ado… presenting the example of my friend.
What He Did When I Was First Diagnosed
When I was first in hospital, I didn’t tell anyone. But then there came a point when this friend had to know, because he’s one of my choir buddies, and I was told I wouldn’t be able to sing for the rest of the year. I’m not sure what level of detail each of the choir people have, but I told this friend I was ill, that I’d been in hospital and would be in and out for a few months, and that I wouldn’t be back in social circulation until at least the end of the year.
A few days later, I received a card from him and his wife. It had the usual “Sorry to hear you’re unwell” message, but it also said “If you need anything, let us know” and then it followed that statement with a few examples: picking up shopping, being ferried to hospital appointments, looking after the cat. This was much appreciated, because the fact that they’d put effort into thinking of examples made me feel like I probably could call them if I needed to, rather than that they were saying it because they felt like they were supposed to.
This was followed, however, by my favourite sentence of the whole message, which said something to the effect of “We know you’re the kind of person who doesn’t like a fuss, so we’ll leave you alone until you want to get in touch, and we won’t be offended if we don’t hear from you for ages – we just wanted you to know we’re here.”
THIS. IS. PERFECTION.
It shows they’ve thought about me as an individual, and what I might want, rather than what would make them feel better. It puts the ball in my court, allowing me control over ongoing communication (control being something that often seems to disappear when you’re ill), but does so without making me feel guilty if I don’t feel like replying.
I sent them a card back to say how much I’d appreciated their message, and letting them know I’d get in touch when I felt like socialising. I heard nothing back from them. Again, this was very refreshing.
What He Did When We Saw Each Other Yesterday
He opened with “Scar! It’s so good to see you!” and then waited for me to lead the conversation. This gave me an opening to enquire after him, his wife and family, and our mutual friends, and to feel like I was participating in a normal human interaction, rather than something focused around how ill I am.
He spoke to me in exactly the same way he’s spoken to me every other time we’ve seen each other. There were no awkward silences. There was no feeling that he was desperately digging around for something to say. We just chatted like normal people. Now this might be difficult to do, because sometimes it can feel awkward if you haven’t seen someone for ages and they’re ill, especially if they look radically different. But even if you’re feeling awkward, it’s nice if you at least try to have a vaguely normal conversation (“normal” meaning “whatever you normally talk about with them”).
He let me bring up (or not) the subject of my physical health.
He took cues from how I was talking about being ill, and went along with them. I’d say I’ve been pretty positive throughout this whole thing. Naturally there have been days when I felt like shit, but on the whole I know it’ll probably be over at some point, so in the meantime I’m just plodding along and making the most of it. He picked up on this, and we shared a smile about how it was giving me extra time to sit around reading.
As we said goodbye, he reiterated what he and his wife had said in their card: we’ll wait for you to get in touch with us, let us know if there’s anything you need. He then said possibly my favourite thing of the whole encounter: “…and when you’re ready to come back and socialise again, let us know if we can help ease you into it.” That was a very thoughtful thing to say. He knows I’m not a big socialiser, he knows people will probably make a fuss when they see me after a year and that might be difficult for me, and he offered to help make the transition easier.
What He Didn’t Do
Say “But you don’t look sick!”
I get that people probably think they’re giving someone a compliment when they say this. But what it can often sound like is “Hmm, are you really as ill as you say you are?” Which sucks. Please don’t say this.
Text / call / email / whatever repeatedly.
Sometimes people will send a message, and if you don’t reply they’ll send more and more and more, basically all saying “Are you OK!?!! What’s going on?!!?!!” which is really fucking annoying when you’re hopped up on morphine and can barely keep your eyes open but need to keep your phone on and next to you in case you need to call an ambulance to take you back to hospital. I have somewhat diminished this problem by turning off all notifications on my phone, but a lot of people don’t want to do that.
Remember: your friend who is ill probably doesn’t have a lot of energy. It may take them a few days to reply. Don’t guilt trip them about that. If you’re genuinely worried they might have died or something, reach out to a mutual friend who’s closer to them than you are, and see if they know or can find out. They’ll probably be better placed to do it in a way that won’t make the person feel worse.
Speaking of which… absolutely do not turn up unannounced at their house.
Yes, this happened to me. I’m pretty sure it was well-meant, and that the people just wanted to say hi, and also that they probably didn’t understand how ill I am, but… yeah, no. Don’t do this.
Saying “How’s it going?” is generally taken in the spirit it’s meant (although it can be difficult to come up with a proper response to that, when the answer is usually the same and rarely positive). If you know they had an appointment or something because they shared that information with you, asking how it went is generally fine too. But don’t push for details. If someone asks what’s wrong and I say “some internal organ problems”, it’s not because I don’t know what’s wrong with me, it’s because I don’t want to go into detail about it with you. I don’t want to describe my symptoms (and honestly, you probably don’t want to hear them either). Assume I’ll tell you what I want you to know, and don’t try to make me tell you more than that.
Share unsolicited information on special diets / magical cures / homeopathic remedies.
This is without a doubt one of the most annoying things you can do, and again it seems to be one that lots of ill people agree is very unhelpful, if you read through blogs and social media posts on the subject. I don’t care if bee pollen cured your cousin’s illness, or if your uncle refused all modern medical treatment and magically cured himself through the power of meditation. I don’t care if you think I should try eating foods A, B and C because they’re better for my condition in your opinion. I literally have a team of experts working with me to try to make my condition liveable. If I want advice from experts other than those ones, I will go and find some. If I want your opinion on something because you happen to be an actual nutritionist / doctor / specialist in my condition, I will ask for it.
The absolute WORST example of this is when someone recommends something stupid like this, and you thank them politely because you don’t want to make a fuss and just want them to stfu, and then they FOLLOW UP and ask if you’ve eaten the pollen / followed the meditation tapes / activated your bloody chakras, and if you admit you haven’t and they know you’re still unwell, they assume it’s because you haven’t subscribed to their particular brand of bullshittery. Again, DON’T DO THIS. (That’s right, bitches, you get double bold letters on this point because it’s SO ANNOYING.)
- Your friend is still your friend. They probably haven’t morphed into an entirely different person just because they’re ill, so don’t treat them like one.
- Let them know you’re there for them, and in which ways.
- Don’t pry.
- Don’t tell them they don’t look sick.
- Don’t share bullshit hippy remedies, even if you really think they might work.
- If you have in-jokes with them, keep them going. They (probably) haven’t completely lost their sense of humour, and it can be a great way to relieve stress and make them feel a bit more human.
- If there’s something they specifically ask for, do it if you can. For example, at the beginning of my illness I couldn’t read for ages, so I asked for Netflix / TV recommendations. Looooaaads of people sent them. This may have felt to them like an insignificant thing to do, but trust me, to me it was exactly what I needed. So if you did that, thank you.
- Let them have control over the relationship. So much else is out of their control right now.
Again, I can only write this post from my own perspective, but hopefully it’s helpful for other people too. If I’ve missed anything, let me know in the comments.
And thank you to all the friends and acquaintances who have been great throughout my whole shitcaboodle this year. Here’s to being able to drink wine together again at some point in the future.