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.
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.
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, strewn things about as they sift through the house as if bored, and left things in utter disarray.
Would you like to take the stairs or the elevator? (And respect my answer.)
Revanche: Being aware that 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.