On chronic life and being good humans
February 28, 2015
I started this piece with Katie months ago for @PhDisabled but it’s Rare Disease Day so it is fitting that I pull it together now.
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It’s unlikely that you’ll have said these things since my usual readers are unfailingly thoughtful and kind but you might have heard some of them, and perhaps in the context in which they’re delivered to us.
Most days, I have a sense of humor. Wicked, yes. Pointed, oh yes. I do find the funny and the irony and the chuckle in most things so it’s often easy to shrug off another microaggression equivalent of failed expressions of concern. Most days. Then there are the days when @PhDisabled starts a conversation and reminds me of those thickly bitter moments that Katie (dealing with her own serious medical issues) and I scowl over.
What not to say to people with chronic illness:
Some of us occasionally express frustrations with living, isolated, with unremitting pain. Surprised? These people were.
You should try massage.
Revanche: That’s novel. That’s never come up in the last 20 years. Oh. It has.
You should try acupuncture.
Revanche: That’s novel. That’s never come up in the last 20 years. Oh. It has.
You should try this! It’s this healing water that your uncle’s mom’s cousin’s horse’s trainer’s sister drank once and it cured her cancer.
Revanche: Because any liquid can cure cancer. Also, I don’t have cancer. Just FYI.
Take home this plant, chew one leaf a day, it’ll make it better! It can’t hurt.
Revanche: It CAN HURT. You don’t even know what this plant IS.
You should rest more.
Revanche: More than 20 hours a day? How much more?
You should try vitamin B12.
Katie: Where did you get your medical degree again?
Revanche: Vitamins aren’t medication!
I could get hit by a car and die any day.
Katie: That really is the same thing as having a 66% chance of brain bleeding and being permanently disabled! Thanks for the perspective!
Revanche: Would you, please? But seriously, what possesses you to say such a thing?
You need to push through the pain.
Katie: Said only by people who have never experienced migraines.
You’re so lucky! I wish I could lay in bed all day!
Katie: You left out “in excruciating pain.”
Revanche: “Could” is not the same as “have to”. For the love of …
Must be nice to only fill your car with gas once every couple of months.
Katie: Oh, yeah. Being stuck inside, unable to leave my house because of pain is a regular hootenanny!
Revanche: That’s how you look on the bright side? Unrelenting pain, one hand. Saving on gas money, other hand!
You have to be positive. If you believe this medicine will work, it will.
Katie: So that’s my problem!
Revanche: starts cursing in Dwarfish
But you look fine!
Katie: I’m sorry chronic migraines and brain masses don’t manifest like a broken leg in a cast. I promise I feel 400 times worse than I look.
Revanche: This isn’t the medical version of Dorian Gray’s portrait, we’re not hiding the imagery in the closet.
Said sarcastically: Why wouldn’t people want to be around you? You’re just a ball of sunshine!
Katie: I have enough anxiety about being the cheerful chronically ill person without you adding to it, thanks.
Your depression and suicidalism are just like the time I had a really bad cough, and I kinda sorta wished a car would run me over just so the coughing would stop.
Katie: Glad I’m not alone. Also, nope.
Revanche: Your face is like a really bad cough.
It could be worse! / You think this is bad? Just wait until….
Katie: As if chronically ill people don’t spend enough time doubting themselves, feeling like they’re exaggerating their pain, feeling selfish for even talking about their pain. Again, thanks for the perspective.
Revanche: STOP IT. As if it being worse isn’t among our worst nightmares, why the hell would you try to make us catastrophize? That’s NOT helpful. I also hate hearing this about anything not medical related for the same reasons.
If you’d go outside in the sun more often, you wouldn’t be so depressed. It must be God’s will./God doesn’t give you more than you can handle./Appreciate the roses and the thorns.
Katie: Shhhhh, stop talking now.
Stop thinking about it so much.
Katie: Okay, don’t breathe air.
Revanche: Don’t blink. Just stop blinking. Right now.
I think you underestimate yourself.
Katie: Trust me. I know my physical limitations better than you do.
Revanche: *growl*
Why don’t you … [insert their idea of treatment here]?
Revanche: I’m actually not obligated to justify my healthcare to you. Thanks.
What to say instead:
After a long spate of patronizing comments, I prefer people just keep their mouths shut, forever, but then again, there are some people who get it right.
Absolutely nothing.
Katie: Most times the only thing I need is an ear, an open mind, and a hug. Letting me talk about my fears and my experiences means so much more than anything you could say.
I don’t know what to say, but I think of you often and I love you.
Katie: Again, just knowing that you’re there for support is enough. I already know you don’t have answers. I’m not talking to you because I want you to solve my problems or cure my illness.
It’s okay if you need to cry.
Katie: Probably the hardest part of my life since my diagnosis has been the feeling that I need to always be The Inspirational Chronically Ill Person. Knowing that I can let my guard down around you, speak honestly about what I’m feeling, and cry if I need to… Well, that’s everything.
Revanche: And I may not believe you but it does help to hear it.
I’m going to the store tomorrow. What can I bring you?/I’m bringing dinner over on Wednesday. Would you prefer chicken or fish?
Katie: All too often I hear “Call me if you need anything.” Whether it’s due to pride or the cynical thought that no one actually means what they say, I never call. If you know a loved one is homebound and unable to cook or perform basic tasks, offer to help them by making a plan to cook for them or run their errands.
Revanche: “Call me if ..” has proven over and over to be a verbal crutch. The people who mean it ask for concrete details like “Do you have enough food for the week?” or “Would it help if I [did this or that thing]?” If I think you’re sincere, then I will tell the truth. If it just seems like a conversational throwaway as it often is, I’ll just struggle on with my day because I’d rather skip the disappointment when the follow-through falls flat.
I’d love to spend time with you, would you be up for it [this day/time] ? (And BE ON TIME. And don’t make a mess for me to clean up!)
I’d like to see you this weekend, are you up for a visitor? I’ll bring lunch.
Revanche: Assume that I would also like to spend time with you but that it’s possible I won’t be able to even sit up. One of the most frustrating things is the thoughtlessness of those who spout how much they miss me but can’t be bothered to think through the impact of their social visit where they show up late, strew things about as they sift through the house as if bored, and leave things in utter disarray.
Would you like to take the stairs or the elevator? (And respect my answer.)
Revanche: Being aware of the difference between taking a flight of stairs vs the elevator and offering the choice tells me that you understand there are things, normal things that normal people do, that I can’t always do. Without making a big deal out of it, offering the choice is an enormous relief when I can’t bring myself to remind people for the jillionth time that I can’t do everything they can.
And don’t get me started on the patronizing fatheads who think it’s their life mission to help everyone they deem disabled whether or not that help is needed or welcome.
How are you feeling today?
Revanche: There’s a subtle, but significant, difference between “how are you?” and the more specific phrasing.
To err is human …
We know that people simply don’t know how to relate to those of us who live in constant, unremitting pain and we can forgive the occasional gaffe. It’s just useful perspective to know that for every one foot in mouth moment you observe, it’s about the 300th time we’ve heard that comment. Maybe just that week. We’re already exhausted, any bit of consideration and thoughtfulness is appreciated.
Related reading:
Illness Etiquette
A Storify: Discussing ‘On Pain & Celebration’
Both Tim and I cracked up reading this. He especially liked the dwarfish cursing. And I cannot express how much I loved the line about not having to justify your healthcare. I never would’ve thought of that, but it’s perfect.
And if I hear the B12 suggestion one more time… Rifle. Clock tower.
B12! ALWAYS WITH THE B12! All the other vitamins must feel so unloved, none of them are ever suggested.
Go forth, my friend, and retort away.
Thanks for offering some solid suggestions for what to say instead! I always feel so insincere saying “call me if you need anything” because I feel like that sounds so vague and open, the person has no clue how to take me up on that offer. It’s good to know that I can offer something more solid and concrete, like food and errands help.
You’re welcome! I don’t think that everyone who says “let me know…” is insincere but it’s the stock phrase offered and so it’s hard to tell who would be willing to do something if requested or who would be best to ask for what sort of help. Then then we take a chance and get shot down or there isn’t any follow-through, I think you can see why we aren’t willing to try repeatedly.
Maybe there should be a Golden Spoon Award for the most assholic things people say. I’m sorry you have to hear so many of them.
Oh, wait, you forgot one:
“But aren’t we ALL disabled, in some way?”
Or perhaps a Rusty Spoon Award? (Too churlish?)
Ah ha, you’re right I did forget that one! Bonus!
Sometimes I don’t like people. The statements above are one of the reasons why. This is an important post and your advice is great. I especially like say nothing and what can I bring you.
Agreed! 🙂 Thanks for reading!
I’m sorry. That has to be so frustrating. In an unrelated yet related parallel, I get people making suggestions about what I should do as a freelancer too. Most of it makes me want to shake my head, but I have to try and understand that people mean well. When my friend had cancer she has a web support page kind of thing. There were so many messages of “it’s God’s will” which I kind of hated for her. I don’t know the extent of her religious beliefs, but why do people assume she is religious or believes in God? That’s them projecting their faith on her. Anyway, sorry you have to deal with frustrating questions and suggestions.
Some people mean well, others … who knows! 🙂
I empathize with your frustration on the advice to you as a freelancer – unless you asked, I don’t understand why anyone thinks they ought to make those suggestions.
Thanks for this. So often people mean well but have no idea what to say or how their words come across. I’ll be very mindful in the future.
I’m sorry you hear so many awful things from so many people!!
Like I said, y’all are a special bunch, you’re already so thoughtful!
This post reminds me of my pet peeves with some of my new age friends who I love dearly but who tend to offer acupuncture, yoga and supplements as a cure all for any and all ailments. I had a catastrophic year in terms of my health last year. I required medical intervention several times and a lot of people who I love kept suggesting acupuncture, yoga etc. I had to really bite my tongue and say thank you. Sigh!
I’m so sorry you had such a bad year last year – I know that people mean well but goodness, people have got to know that the same three treatment methods aren’t always the answer.
Thank you, this was so great – lots to remember. So often I’ve found myself in the stuck for words bucket.
Even I don’t always know what to say but I’ve learned at least when to shut up 🙂
Very helpful. People should think before they talk, but I’m sure we’ve all been careless in the past. It is really hard to understand a life with chronic pain or illness when you have not been close to anyone with one. I’m definitely in the “not sure what to say/do” bucket most of the time – thanks for sharing!
It’s a learning process and not everyone is interested in learning. But I appreciate the ones who do care.
I like this as a reminder that as a friend we don’t need to solve or fix our friends’ problems, we just can be there, show up, and show we care. I like that “How are you feeling today?” especially. Sometimes “How are you” directed to anyone in a specific tone just sounds so damn judge-y!
YES. I’m personally a fixer but not if I haven’t been asked to, or not if I haven’t asked if they would like a suggestion. Our jobs are to provide support and that’s only effective if you offer what is needed: often, it’s just a shoulder to lean on.