Thursday, May 23, 2013

How not to be an asshole to someone who is sick

So, I'm sick. In that vague "we don't know what's wrong with you and there's no visible symptoms! You can see a neurologist... eventually" sort of way. It sucks, but it could be worse. It's very much an on/off sort of situation. I'm either fine, or I'm not, and I can usually tell when I'm about to cease being fine (or might be, anyways) and can escape to safety (what ever that means) and decide if I want to take the (only slightly scary) prescription pain killers that live in my purse or just curl up in a ball of pain and fuckthisshit. This has been something I've been evasively describing as "migraines" to those who need to know something is up, but the situation has gotten to the point that I'm on disability at work now (well, will be. I think? Paper work is being processed. They may have fired me via paper work? I'm having a hard time getting any sort of answers about what the hell is going on). All in all, a bit of a shit sundae.

I held off on telling my family what was going on (I still haven't told most of them) and dread getting into it with friends (sometimes I mention I'm on disability now when people ask me about work, other times I just lie and say I'm still working) because I keep having to go through the exact same shit. So, if you're like me when faced with a loved one who is sick and desperately want to help even if you have no idea how to do that here are some tips on what NOT to do from someone who has now been on both sides of that fence!

If you find out someone in your life is sick/dealing with some huge scary thing/insert shit storm here, do NOT get upset at them for not telling you sooner.* I don't care if it's your grandparents/kids; they're adults who get to decide when and what to share, and making them have this conversation will make them want to tell you less in the future. Instead just reassure them that you have their backs, which brings me to...

"Hey, is there anything I can do to help?" Listen, I feel you on this. I've been on the other side of the fence, and I get that you just don't know what to do, so you ask, but there is a very huge chance that the person doesn't know themselves. So if you're going to ask, maybe in the future offer specific things like "Want me to pick up some groceries? Need a lift? How about I come over and make you dinner? Need help researching X? Want me to take the kids for an afternoon, need a distraction and want to go blow off steam?" and don't pressure them to say yes. If they DO accept an offer, do it cheerfully and without a single complaint, and never mention what a huge favor you're doing. People are proud and it can be really hard to say yes to these offers, if they feel they may be taking advantage of you, it can be damned near impossible to say yes to them.

"Are you allergic to gluten?" If one more person asks me this I might punch them. I'm not even joking a little bit here. Unless you are a doctor, you should not be trying to diagnose people. You are not a doctor, and I have been dealing with this in some capacity for years (and its current one for months) and have been seeing a doctor! Anything you come up with off the top of your head is something that I have already thought of, as has my doctor, and as you pepper me with questions about my health/diet you are being as patronizing as you are invasive. It's also an unwanted and frankly cruel reminder that I don't know what is wrong with me, or what can set it off. **

"Well maybe it will all just magically get better! Just stay positive! It's all part of God's plan! Etc" I want anyone who says this to know it takes great effort for me to not just say "Fuck you" and walk away when you say this to me. What I am dealing with is very real, and you are implying there is a reason I am in so much pain that I am liable to puke at any moment? What, was there not enough tension so the great writer in the sky decided it was time to throw some shit at me to keep things from getting stale? Again, I get that you mean well and just don't know what to say, but "Try and stay positive, want to talk about it/a distraction?" is less frustrating and just as well intentioned. It also doesn't feel like you're just trying to shut me up because you're uncomfortable hearing about it. Guess what, I'M UNCOMFORTABLE FEELING IT!

"I am so upset about you being sick!"*** Rather than go on about how this is making someone already dealing with an issue (I keep using sick as the example but applies to most shit storms. Lost loved one, financial difficulties...) have to stop and waste mental energy and spoons on you, I'll just link to the wonderful kvetching circle. "I'm worried about you" expresses a similar thought but is less about you and more about them/their illness.

"How are you?" Okay, I admit this is probably about the extent of what I want people asking me (as I said, it's mostly an on/off switch for me, so this is a reasonable thing to check on) but try not to act like I'm about to shatter on the spot. I'm still a person, not an illness.

Don't tell me I can't be angry. Okay, this one might just be my Mother but when I started ranting about how frustrating/patronizing/invasive it was for people to constantly ask me about my medical history because apparently everyone around me has a secret medical degree? Her response was to tell me that they meant well and I couldn't go around talking like that to people and admonished me for sounding "pissed off". I am dealing with a lot already, and these people are making me deal with more. I get to be pissed off, and I get to vent.

Listen to them. Sometimes I want to talk about it, and sometimes I don't, and while it's fair game to check in at any point at which I am, some people check in because they want to talk about it and don't really listen to what I'm saying. If it's the type of medical issue that offers some very real restraints (can't walk far/stand/deal with loud noises) and they tell you that, remember it and don't make them repeat themselves. Again, people have limited time and energy and being sick cuts into that in ways you probably don't think of, you asking them to repeat their limitations repeatedly cuts into that. It's hard to remember everything, but there's a difference between making them say "Hey can we park closer? It makes a difference to me" instead of checking in on how far they can comfortably walk.

But I want to help and I need to ask them about gluten/whatever so I can make sure they are taken care of! It isn't about you. If you are doing this you are more concerned with feeling like you're helping than making the distressed person less distressed. Being sick is so much worse than I had ever thought. There is so much fear and frustration with not knowing, so much more than I had thought there was. I get it, you mean well! You only want to help! But intent is not fucking magic. And if there is only one thing you take from the list, let it be this: stop suggesting I'm allergic to gluten.

This list probably sounds bitchy, or ungrateful, but I've been on the other side, and been desperate to help and baffled on how to do so. I'm writing this now from the side of the person you so desperately want to help. I don't speak for all sick people, there are a lot of different kinds of "sick", but I will say this. Being on this side of the fence is different than I thought. It's scarier, more confusing, overwhelming and so frustrating. I'm writing this both as someone who's earnestly wanted to help, and who would earnestly like those around me to be able to.

So, readers, is there anything you'd add to the list?

For those of you wondering, 50 Shades will return next Thursday, and Cat's Cradle will run this Sunday. Hope to see you all then.
*Spouses exempt from this one.
** Will, being Will, has started saying things like "Good thing they figured out it was the stress-gluten in your birth control!" when I rant about people thinking they are entitled to my entire diet and medical history. I'm pretty sure he was nicer when I first met him and that I've gradually been breaking him.
***Spouses also exempt from this one.


  1. I'd add, as a corollary to the gluten allergy one, "Don't ask me if I've tried X treatment/drug/exercise/homeopathic garbage." Chances are I've heard of it already, tried it, or rejected it as bs/inappropriate for me. Seriously, I am a freaking expert on my particular chronic illness; because it is happening to me, I have done my research. My treatment is between me and my doctor - it's always really invasive, and sometimes really insulting to suggest something you happened to see in a magazine once. Especially when this takes the form of, "I met/heard of someone who had [your incurable condition] - they tried [vitamins/tai chi/aromatherapy/positive thinking] and now they're cured!" Seriously, screw that. If they're cured, they never had what I have. Anecdata is not evidence, and I hate the implication of "You could be not-sick if you wanted to," generated especially by repeat offenders.

  2. About the positive thinking thing, I recently read a really neat post articulating everything that's wrong with it:

    Gluten's not the first thing I'd think of with migraines (going off gluten didn't help mine); I think most migraine sufferers aren't gluten intolerant, although some (like me) are. Unfortunately for me it's not a causal relationship, so I still get them frequently. I have multiple disabilities and only my allergic symptoms were improved by not eating gluten. I guess gluten's just on everyone's mind these days, especially since it's coeliac awareness month. But it's also cystic fibrosis awareness month and people don't seem to be suggesting that. And last month was autism awareness month. Maybe the problem is adult onset autism? (sarcasm voice since these things don't always show up online)

    I'm self-diagnosed so I don't know if what I have is wheat allergy, coeliac, or generic "gluten intolerance", all I know is I get the bad pains when I eat it and I don't when I don't. At first, I noticed that I was in pain "every time I ate" to the point where it was putting me off food. It was pretty obvious that it was something I was eating because I felt awful every time I ate and felt better (but hungry) when I hadn't eaten for a while. Eventually, I got to the point where I decided to just eat plain bread, and noticed I still got the pain and went "huh. maybe it's the bread then" and after that things got a lot better.

    Being gluten free is pretty expensive -- the only way I manage it is by eating mostly rice, onions, and potatoes (all of which are very cheap where I live). And I still get lots of people pushing paleo on me! It's like they think I'm halfway there already, I just need to cut out all grains entirely and live on nothing but the most expensive flour (almond flour), replace sugar with something that costs 15 times as much, start eating lots of meat (I'm an economic vegetarian -- I eat meat once or twice a month when I can afford it.), and use coconut oil instead of cheap-store-brand margarine. Yeah, I'll get right on that as soon as I win the lottery.

    So, I certainly think it's wise to try to find correlations between onset of pain and recently eaten foods -- especially in cases like mine where I felt awful whenever I put food in my mouth -- but there are hundreds of other things it could be, you know? You and your doctor will get to the bottom of it. You will research your own symptoms, and you will find your way. You're the expert on you and what's going on with your body. You know your symptoms better than any of the people you're talking to.

  3. I hear that. I have never been sick for long, nor do I have a cronic illness, and I still get pissed at people sayin things like ''It's only our thoughts that make us sick. If you think positive thoughts your cancer will go away, negative thinking is keeping it.'' Why, thank you for that incredebly usefull medical advice. I didn't know people really caused that cancer themselves! You are brilliant!
    Sorry for being bitchy and for crappy english.

  4. As a socially awkward person, I'm always wondering how to handle this kind of thing without looking like an asshole. Just saying something along the line of "that sucks" seems to be not enough in some circles, and if it's something I can relate to, then I have trouble communicating "I kinda know that feel (though my experience probably wasn't as bad)" without sounding like I'm going all enoughaboutyoupayattentiontome. And it just segues so easily into speculation and guesswork and shit. I guess I need to keep cool stuff under my trench coat, or in emergencies, set myself on fire.

  5. Don't be a cock if your friend can't make it to lunch/the party/your event, or if they have to leave early/opt out of part of the event. I thought this one was common sense, but apparently a lot of people like to call sick folks "rude" or "flaky." Apparently, a lot of people need to be beaten around the head with a copy of the Spoon Theory; the Venn diagram of people saying "rude" and needing beatings is, surprise, a circle. Yes, sick people might cancel five engagements in a row. They probably really wanted to go because they miss a normal life, and were hoping they would be able to make it that day, and then whoops, no, that sneaky motherfucker Sickness showed up and ruined everything. Sick people are not flaky (Well, unless they always have been, but surely you would have figured out how to cope by now?), they are sick. They are at the mercy of unpredictable forces that don't always have a treatment or an expiration date. The only appropriate response is, "Okay, cool, you'll be missed and I hope you feel better. We can reschedule for whenever you are able." Feelings of sadness or frustration need to be left out of that response, and need to be directed somewhere neutral, where Sick Friend will never hear of/read/see them. They're not being sick *at* you, as Captain Awkward would say.

    Fingers crossed that everything works out with your job and with money, and that the doctors figure out what's going on and how to stop it.

  6. I'm just saying, keeping cool things on hand in case of awkward emergencies is NEVER a bad idea. I used to have a rubber chicken in my purse for about that reason.

  7. Can I underline, star and all-caps pretty much all of this? In my case it is my developmentally disabled brother who has the chronic, serious illness. He spends a lot of his life in hospitals.
    I'd add a corollary to the list 'o platitudes: "I'm sure he'll be home soon!" Because my response is: "Really? He'll be home soon? That's great to hear. I'm so glad you know that. How do you know that? Because I'm pretty sure he isn't going to be home soon, based on, well, everything that has happened so far."
    I second the 'god's plan' one too. If it's god's plan that he will be better soon (not true based on medical evidence) then it was god's plan that he get this sick. And that does not make me feel better, it just reminds me why I am an atheist.

  8. Is there a way to ask about things like "are you allergic to gluten" that doesn't sound like I'm trying to diagnose you?

    I ask because we do have some severe food allergies in my group, and if something about someone's symptoms makes me suspect, say, a nut allergy, I'm going to ask if they have a nut allergy just so I don't do something like bring them a fudge crostata (which has hidden nuts in it) to cheer them up. It's not because I'm trying to play doctor - I just need to confirm so I don't accidentally kill you with food!

  9. In my experience as a food wizard, whenever I offer people food if
    they have any sort of dietary restrictions they ask me what's in it
    first. That aside, I'd treat it the same way I would when I want to feed anyone, just ask if there are any dietary restrictions because I want to feed them/am bringing something to a party/insert scenario here.* "Hey any dietary restrictions/allergies I should know about if I ever want to feed you?" is not prescriptive or invasive.

    *House parties with a facebook page are a great chance to scope this out as you can just write on the events wall, and no one feels singled out.

  10. Yeah, I try to be sympathetic to "BUT THEY JUST WANT TO HELP AND DON'T KNOW WHAT TO SAY" but they are making it worse. Is it impolite to stop them mid-platitude and say "I know you mean well but you need to not finish that sentence. Let's just agree that it sucks, okay?"

    Although I'm curious, do you find "I hope he can come home soon" to be very different than "I'm sure he will come home soon!"?

  11. Yes! Or the people suggesting to just boot-strap your way through it. Before I was put on disability I had a co-worker take me aside and say that it was poor work ethic for me to be missing so much work because of a "head ache" and started telling me about some relative who got migraines and took a magic pill and they never missed a day of work!

    God, I wish it was that easy.

  12. Yeah, people seem to think it's "just" pain. They've had a headache, or a backache, or whatever and they powered through so why can't we? They don't get that a milder, transitory issue is nothing whatsoever like a severe, chronic condition with no end in sight. It's like, dude, don't y'all think I'd have "willpower"ed through this already if it were physically possible? I'm kind of sick of this being sick stuff myself.
    It also seems like "variable condition" is too complicated a concept for some people to bother grasping. Like, yes, I went to the museum last week and wandered around a bit, but today I'm bloody well staying in bed. Or that conditions also vary between different people - sure, your relative had migraines that were comparatively mild and responded well to medication - that's great, I wish mine were like that.
    Also, migraines are the worst. Sorry your coworker is/was so crappy. :(

  13. Totally. And how do they account for happy people dying of cancer whilst grumpy pessimists survive? I guess they ignore that, so they can feel like they can control what happens to themselves. It's kind of sad really, that they're that scared of life - but that doesn't excuse them for vomiting their insecure philosophy all over other people.

  14. I get this a lot, even though I don't consider what I have a disease. I'm sick of being told Incan be cured by doing x h or z. Its like, dude, it's genetIc. Unless you can go inside and chane my genes, stop t.

  15. I find " I hope he can come home soon" is so much easier to hear as supportive and empathetic. Because that's what I want, so I can simply say "Me too."
    I really want to people mid-platitude but then I have to deal with thier feeling offended and/or hurt. Which I just don't need.

  16. How about don't tell me what I should have done/should be doing/should do unless I ask for the advice? That one gets me. It's also what keep me from telling certain people that I'm severely depressed or sick for quite some time because it just feels like criticism. And when sick physically or psychologically, I'm pretty emotionally fragile. Criticism is not something I want or need.

  17. Much of this applies to people with mental illnesses as well. I do sometimes think that it would be easier to be able to say "this part of y body is in pain" rather than "my brain hates itself and won't let me get out of bed," I understand that the two are very different and both carry incredible burdens.

    The worst for me (and I suspect for people with physical illnesses that aren't clearly vivible) is the suggestion that if I just TRY hard enough I will be cured of everything. What? You wouldn't say to a person with their leg in a cast "You clearly just aren't *trying* hard enough to walk! I'm sure you can do it!" I'm sure if I just stay positive and ignore my basic brain wiring without taking the time to actually work through it and heal it will all magically go away! I personally have some serious self-loathing and blame issues I'm dealing with, so the suggestion that I could fix myself instantly triggers all sorts of thoughts of giult and self-harm urges that you may never know about.

    Similarly irritating are the people who go, "Oh, I know, I used to feel like crap too! But then I found ______ and it CHANGED MY LIFE! you should do it too!" No. I know you are trying to help, but the idea that yoga or no carbs or blah blah blah would instantly fix me is so insane! (Hah, see what I did there? Because of mental illness? I know I'm not funny shut up.)

    I and many others are on a long, difficult road that often take immense time and effort. So, by all means, offer support and patience to those whose minds betray us while we heal as best we can. But please stop trying to fix us instantly or on your terms just because you're uncomfortable and want us fixed NOW. It helps no one and can sometimes do more harm than you can imagine.

  18. I experience something similar with my mental illness. People think that because they've been sad or nervous they know how to deal with chronic major depression and anxiety. (Though I may soon be adding OCD and/or Bipolar II onto that list. Yay for the imprecise "science" of psychiatric diagnosis!)

    I understand that you have had emotions and that yoga/green tea/shoving crystals up your ass helped. It may help me a little bit (the yoga and tea, not the crystals, duh) if I get to a point where I can try it, but such things will not INSTANTLY FIX ME OMG all on their own. It's not that simple, and it's certainly not that easy. I need to do some incredible difficult and against-my-nature work to address my issues and heal. And most of that work will not involve you, Person I Don't Want To Talk To About This. Just say, "I hope you feel better and we can talk if you want," and move on if I don't want to talk.

    Unless you are directly responsible for/involved in my care and wellbeing (parent of a minor, spouse or SO, close friend I have ASKED for advice), my treatment is between me and my doctor(s). Please back off.