Talking to Alice, Kylie, and Karina for this story, one thing that came through is that people often don’t know how to talk to people who are sick – especially when they’re younger than usual.
“At school, it’s definitely kind of hard when you try to tell somebody what you have. They will sort of compare it to their grandparent’s arthritis,” said Alice Jones, who suffers from ankylosing spondylitis.
Kylie Richardson continued working while she was undergoing treatment for breast cancer. She says some people ignored her – head scarf and all. And she did get a bit sick of being asked “how areyou?” complete with sympathetic head-tilt. “But on the other hand it’s still important to still ask that,” she says. “Especially once all the chemo and radiation was finished, people did stop asking, but that was actually when I was the worst.”
In a very widely shared piece, Susan Silk and Barry Goldman advocate the “Ring Theory of kvetching” in the LA Times. Basically, the closest you are to the centre – the sick person – the more right you have to angst.
Here are the rules. The person in the centre ring can say anything she wants to anyone, anywhere. She can kvetch and complain and whine and moan and curse the heavens and say, "Life is unfair" and "Why me?" That's the one payoff for being in the center ring. Everyone else can say those things too, but only to people in larger rings.
Another theory you might have heard of is “spoon theory”. Written by Christine Miserandino, it explains what life is like for people who don’t “look sick”. Spoons are, basically, the energy you have to get through a day. Use all your spoons, and you’re done. “Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous.”
Photo: Aleyna Martinez
Also writing about an invisible illness, Sarah Wilson says if someone tells you they’re sick, regardless of whether they’re wrapped in bandages head-to-toe, or in a wheelchair, or use a walking stick, just accept it. “You don’t need to validate or invalidate it by expressing your perception of how they look. You don’t need to ask them personal questions about how they’re coping. You don’t need to suggest “helpful” things they might be doing to get well. Believe me, they know.”
Helen Fletcher suggests not saying “I never get sick”: “If you are just for some reason bragging about your lack of sickness, that’s fine. Perhaps you are recounting the time you were exposed to small pox, ebola and measles all in one day, and yet still didn’t get sick? In this case, by all means tell me about how you’re lucky to never get sick. If I have just told you about how I had to take time off work because of______ illness, perhaps not the best time to tell me about your perfect health.”
Illustrator Jem Yoshioka – whose work will be on The Wireless this month – understands people’s curiosity, but says recovery is hard, and doesn’t happen quickly or easily. “If you really care about that person in your life who is struggling with a chronic illness, don’t take them quick fix answers, take them your support. That’s the one universal thing I can guarantee they will need.”
And from a Wellingtonian who is currently undergoing treatment for cancer, but wanted to be anonymous, we have a long list of ideas for how to talk to sick people:
1. Don’t ask me how I’m doing and expect a real answer. You won’t get it.
2. Don’t tell me to not think about being in pain. It’s constant.
3. If I want help up the stairs, I’ll ask you.
4. If you’re feeling overwhelmed and scared, that’s OK. This isn’t a textbook situation. There’s no handy book for how to deal with this. But you can say “look, I want to talk to you about this but I can’t right now, can we take this up in person later tonight?”.
5. If someone tells you they’re too tired for something, respect that. They’re attempting to look after themselves which is really, really hard.
6. Don’t tell me that you NEED me here. I don’t think I want to die either. There’s still so much to do in my life. I’m meant to be 28 and dating and saving to go travelling again and taking jobs on the other side of the world and doing stupid things and building a home and enjoying myself. But you telling me that you NEED me here isn’t going to help. If you insist on it, say something like “this is really hard. I’m here, whatever you need, even if that’s someone to sit with you and cry/shout/break something”.
7. Don’t say “let me know what I can do” – offer specifics. Say something like “I’m in town and am on a manic cleaning thing, do you want me to come and change your sheets or something?” If someone is completely anti-help, think practical stuff. You know, cooking a load of food and just dropping it off and then leaving. Sometimes people might be totally stoked to be given food that they can just heat up but not be up for dealing with people. Catch 22. Or something. I don’t know.
8. Unless someone specifically brings it up, don’t ask about the illness situation. They’ll talk if they want to – demanding to know updates is exhausting.
9. DON’T EVER SEND QUACK INFORMATION. I don’t want to know carrots, coffee enemas or anything similar cured your friend.
10. Don’t talk to me about how hard it is to see me like this. Probably someone will HIT you. Like me. I know it’s hard, I know everyone I know has incredibly low spoons right now, but please don’t dump it on me that you find it hard to see me in pain. You’re not IN pain, you have no idea what you’re talking about.
11. “You don’t look sick” – no that’s because I put makeup on and haven’t lost my hair. It doesn’t mean I haven’t spent three hours throwing up.
12. Don’t say “you’re going to be fine” – chances are I WON’T be fine and even if I’m ‘cured’, this disease has had long term effects on the rest of my life. If you want to open a conversation, for starters, you’d better be prepared for tears and HARD, HARD conversations. I know it freaks people out but I have a complete death plan. I’ve given my computer password to someone and there’s instructions for EVERYTHING in a document. If I don’t die, I still have a complete mind-shift. Ask me what is worrying me, what I’m thinking about. If I want to talk, I will.
13. Don’t talk about the “fight” or the “battle”. This isn’t a fair fight. I have no control over so much of it. it’s horrible and I hate every SINGLE second of it.
14. Instead of “I don’t know how you’re doing this” say something like “we will be there, whatever you need”. I don’t know how I’m doing it either.
15. Don’t tell me the doctors don’t know what they’re talking about. They’re all I’ve got. They’re everything.
16. “Don’t be so down about it, positive thinking makes a huge difference”. Well I bloody know that. But it’s not that *&^% simple.
