how YOU doin’?

An interesting moment with a coworker today.

Let’s preface by saying that I am not particularly fond of this woman.  She’s the one who believes she can will away illness.  I called her Linda in a previous post, so let’s just stick with that.

Linda walked through my office today – my desk is in a “shared space” area.  It is both my office and shared space.  Overall I don’t mind this too much.  It’s actually out of the way for most people, except Linda likes to use the largely private restroom that is on the other side of my office/work space.

So Linda walks in and gets half way across the rather large room and says “Oh I didn’t see you there…” at my desk “…how are you feeling?”  I pause, look around at the several people who are working in the room.  I say “Um, that’s sort of a loaded question.”  Linda says “What?”  I say “How I’m feeling.  It’s perhaps better discussed in a different, more private setting.”

Linda looks taken aback, exaggeratedly to my thinking, and says “No, I’m just being polite, asking how you are doing.”  I say “Ok, so you mean you’re expecting one of the five or so codified answers like ‘just fine, thank you!’?”  I say this with a feminine chirpy voice to take some of the bite out of it.  She laughs and says “Yes, like that.”

What

A

Load

Of

SHIT.

I don’t say that. I say, with a forced, fake cheer bubbling with sarcasm “Well in that case Linda, I’m just fine, and how are YOU?”

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“I wish I had that”

and other things NOT to say to someone who is sick.

The title of this post comes from something I’ve heard three times in my life now, the first time from one nurse to another who had just returned to work after a bout of a very nasty GI bug.  “Oh you’ve lost so much weight!  I wish I’d caught that!  Haha!”  The next two times I’ve heard it, it was also in a coworker context but this time directed at me.

Don’t say that to me.  It makes me wish you had it too.  And believe me, that is not a nice wish.  It also makes you look like a shallow, clueless a-hole who completely lacks the ability empathize.

I suspect people sometimes stumble into saying stupid shit because they just got a TMI moment.  And for anyone out there reading this who’s had one, consider this.  If you are taken aback by knowing TMI about a coworker’s digestive process you might consider that the answer might not be “my doctor says I poop rainbows!” the next time you ask about a chronically ill coworker’s day off for a medical appointment.  Now, if you happen to just work with someone who comes in with slide shows of their colonoscopy, well, you have all my sympathy and my blessing to say whatever stupid shit you need to say to get away from them as quickly as possible.

So, other dumb shit not to say to someone with a chronic illness:

Don’t tell them about the latest vitamin megadosing that you read about in a promotional pamphlet in the health food store as if it is going to be the miracle fucking cure.  In fact, unless you have the same thing (or something quite close) as the person you’re talking to has, try to keep your big helpful suggestions about medicine or herbs or vitamins or magnets to a minimum.  I extend that permission to health care professionals who have specialized and up to date knowledge of this particular thing or people who have truly been heavily involved in  caring for someone with the same thing.  Sure…I would love to hear if you, a fellow migraine sufferer or husband of one, has found a wonderful drug/tea/innocuous and inexpensive alternative therapy that helped significantly.  But no, I don’t want to hear that your father in law has migraines and he takes excedrin migraine and it is so helpful, why don’t I just take that?

Because then I either abruptly end the conversation and you notice and think I’m snubbing you or, if the conversation is to continue, I need to tell you I have gastritis and reflux and then you say “duh….what’s that” and now we’re down the fucking rabbit hole.

Don’t say that if they exercise (or exercise more, or exercise better) they would feel better.  No, really, your super slow motion yoga is not something I can do. Walking makes me sore, and sick.  For days.  It makes me not able to do things like my laundry and food preparation and work.  So I choose which needs to be done.  And I do it.  That makes me responsible and grown up.  Not lazy and not depressed and not devil-may-care about my health.  When energy and comfort are precious resources, they are guarded carefully.  If you were living tight on cash and someone who was well off came in and told you something like “you know, you should just treat yourself.  I know I always feel more productive when I go buy myself a new designer handbag!”, you’d probably, even for a moment, entertain thoughts of telling them to shove that handbag up their ass.  It’s the same idea with non-fatigued people giving advice about exercise to someone with a chronic (and fatiguing) illness.

Don’t say “you’re still sick?”  No, seriously.  Don’t.  Just don’t.

Don’t say “wow that’s a lot of pills” or “that’s too many pills”.  Nope, it’s not too many.  It’s maybe not the right ones because the right ones don’t exist yet, the ones that will cure them or at least make all the symptoms STOP without any side effects at all…. And until they do, it’s just going to have to be that many pills.

Don’t say “I get bad headaches too!” to someone who has migraines and expect that you’re really connecting with them….unless you have a condition like migraines, cluster headaches, or other major league shit.  A bad headache is not a migraine.  Similarly, a person who has good reason to think they might have skin cancer and is waiting for the results of a biopsy is probably not going to be super reassured, buoyed, and/or supported by your story of how you once saw a dermatologist to have a simple wart removed from your toe.  Esophageal strictures are not the same as occasional bouts of heartburn that can be treated with a tums, side effects from chemo are not like when you were pregnant and had morning sickness, endometriosis is not the same as “some bad cramps”, the “fatigue” part of chronic fatigue is not just feeling sleepy.

Don’t ask “so what’s going on with you (healthwise) these days?” when the setting is not conducive to a nice long, uninterrupted, safe feeling chat.  I’ve had a good friend do this to me twice now and it sucks.

Some general tips:  You know that old standard, if you can’t say something nice, say nothing?  We could add “if you can’t say something helpful” into it too.  Also, if you can’t talk with empathy and honesty about someone’s health for the love of god don’t pry into it.  And even if you think you can, don’t solicit that sort of thing in a situation that all but precludes talking empathetically and honestly about someone’s health matters (like oh, say, work).  If you do find yourself in a conversation about health with someone who is sick and you are not comfortable, a polite “oh that sounds so difficult for you – I’m sorry you’ve been going through all this” is truly alright to say, then stop.  Or change the topic.  Or ask if there’s anything you can do (but only if you mean it).

So, for my readers with chronic illnesses…what do you wish people wouldn’t say or would say differently?

searching

I believe I’ve blogged about this before…the search terms that lead people here.  What a terrible shock for them to find a sincere blog.  I say this because the word “trick” in my blog title means I get hits from a-holes looking to undertake various sorts of medical scams.  The most recent and breathtakingly dumb search term was “fainting convincingly”.  So for that person and any other who comes here looking for tips on that, here you go.  Here’s how to faint convincingly.

Get sick.  Get a grinding illness that drags the life out of you and turns your day to day into a struggle to be effective, competent, and unmiserable.  Then, go about your daily activities.  Don’t overly limit yourself.  Sure, your blood pressure’s low enough to earn you a hospital admit if you were over 70, but fuck it, you’re young and expected to get out and do stuff, so off you go into the 85 degree weather with your water bottle and salty snacks.  Eventually, something will tax you – whether it’s an overheated room, working through lunch, or a sharp wave of pain from either your intestine or reproductive organs.  And the next thing you know, you will start feeling like you are hooked up to a car battery that your body is trying to jump start.  A bad tingling feeling all over, buzzing in you head and a throbbing static-filled ringing in your ears, graying vision and the feeling that you are overheating and need very much to get down on the ground and vomit.

Ah, then the fun part.  Vision is nearly gone, everything you hear outside your head sounds like it’s coming from the bottom of a barrel which doesn’t much matter since what you really mostly can hear is the sounds in your head, like the babbling profane half prayers coming from you mouth (which feels rubbery and like you’re operating it by remote control).  Then the retching and sweating and roaring vertigo overtake you.  You then realize that you are not where you were.  You have time traveled, you are on the floor or maybe wedged up against the wall, your head hurts, your arms hurt, your leg is bent in a strange angle (you realize each of these things in small peculiar pieces as your brain comes back on line).  You hear people around you speaking loudly, maybe yelling your name and mostly you want them to shut the hell up and go away.  You still want to vomit.  You may.  You might have peed yourself.  You are shivering and want to sleep.  If you are really lucky, I mean if you are really into it and going to give a class A fainting, you might come around to exactly the same way you felt before you lost consciousness, then do the whole thing over again multiple times until someone cools you off, lays you down with your legs up, and maybe provides you with oxygen and fluids.

So you see, it’s so simple to faint CONVINCINGLY.  I hope that helps.

R.N. = really nice

I had a nice nurse yesterday at my IV appointment.  Nice and thorough…did vital signs before and after the infusion (the other one, while pleasant enough, did vitals only before).  Also asked me about what I take for the chronic diarrhea, because she has bowel symptoms that sound very like mine.  She’d never heard of levsin before and wanted to know if it helps.  “yes, when it’s available.  I’m trying to avoid that class of drugs right now though, it makes the whole hypotension/orthostatic stuff worse.”  I explained that for me, the levsin didn’t necessarily stop the diarrhea but it made it hurt less.  “Oh the cramping and sweating stuff, it’s so awful.”  I agreed and made a joke about all the potties I’ve passed out on.  I also told her how a friend of mine and I had been saying we should write a book (although nowadays I should say “write an app”) identifying and rating restrooms for fellow sufferers.  She laughed “I would buy that.  I know where all the good restrooms at stores are around here.”

So another mystery diagnosis person.  She has been diagnosed with lupus, she told me.  “Don’t they think, I mean if you’re autoimmuney, that the bowel stuff could be IBD?”  She said the had but that the tests were negative…not just the colonoscopy based tests but also a blood test.  I had no idea there was a blood test for IBD.  I was happy for her to hear that her coworkers are accommodating of her needs though.  She told me “If I’m doing a colonoscopy or something on a patient and I say ‘I gotta go!’ someone just steps up and takes over so I can run to the bathroom.”  It’s nice to know that someone’s being accommodated in their workplace.