Why I don't want your pity.

A friend of mine recently wrote a piece about having Ehlers-Danlos Syndrome. In it, she says flat out that she doesn't really talk about it because she doesn't want pity. People behave weirdly when you tell them you're feeling chronically lousy.

I feel especially lousy tonight (ed.: last night, at this point). I am extremely cranky, although not as cranky as I was earlier, because I have holed up in my room and taken a fuckton of drugs. I am cranky enough to explain why I occasionally respond to expressions of sympathy by developing a twitch and looking like I want to punch something.

The tl;dr version is that kind words and sympathy solve a class of problems that can be summed up as "not enough emotional support". This is not a problem I'm having. The problems I'm having are more like "major limb has decided it wants to hurt and not really work right for no reason" and "heat makes me shut down so completely that the most complicated thing I've done in the past two days is lay face-down on the bed and watch six hours of Forensic Files on YouTube". For social reasons, I am not allowed to say this to your face, so every time someone corners me and starts pouring well-wishes onto my head, I have to spend time and energy that I really can't spare managing another person's feelings for the eighty-second time that day. I lie about how I feel a lot because it prevents people from doing this.

You walk away from that conversation feeling validated, because your goal was communicating to someone that you understood they felt bad and you wished they felt better, and you achieved it. I walk away from that conversation feeling like I'm probably a horrible person, because I've spent that entire interaction going 'please either do something concrete to help or shut the fuck up, I just want to finish my day as quickly as possible and go back to bed'.

The reason there is such a disconnect between the kind of things I find helpful and the kind of things people think I'll find helpful is that few people have a good idea what it's like to wake up in the morning and take roll call of the things that are going to hurt today. This is good -- it's a whole lot of no fun, and I don't wish it on anyone. But it means they fill in the gaps in their knowledge by trying to figure out what they think they'd want if they were in my shoes, and they have no good basis for it.

There's an axiom in accident reconstruction: "No one makes bad decisions. They make good decisions based on bad information." The information most people have is based on relatively short-term conditions like breaking a bone or spraining an ankle, or that one time they had honest-to-God influenza and spent two weeks feeling like they'd been run over by a truck full of snot. These things are self-limited, pretty much everyone has some idea how they feel, and you're generally allowed to spend a lot of time not doing stuff while you heal up.

You can't do that when something goes wrong every damn day. I keep telling people that if I dropped everything every time I felt lousy, I'd do nothing with my life but cry and put out fires. I know people ask how I am because they want me to know they care, but... look, do you do status reports at work? Have any of them been of any use at all to anyone, ever? Everyone who wants an honest answer to the question 'how are you doing?' forces me to stop and generate another goddamn TPS report that is just going directly into the notional wastebasket because nobody can do anything about any of the things on it anyway. It takes time and effort, and forcing me to take stock of myself disrupts one of my best coping strategies, which is heroically ignoring anything that can't be fixed and isn't going to kill me.

Here is a woefully incomplete list of things that I actually, right this minute, need:

  • I need my left hip to pop back into place and fucking stay there.
  • I need my right shoulder to stop doing the weird spasm thing.
  • I need painkillers that work.
  • I need summer to not be so hot, or at least for my body to not react to heat by powering everything down, including my brain.
  • I need the barometric pressure to stop making like a yo-yo.
  • I need whatever is releasing orgiastic amounts of pollen to quit that.
  • I need landlords to stop jacking my rent up and forcing me to move again.
  • I need someone to decide that the kind and amount of work I'm capable of doing is worth paying me a living wage, and then I need that someone to actually do it.
  • I need my culture to stop insisting that I can take control of all aspects of my life, and that if things are going badly, it's obviously because I'm not trying hard enough.
  • I need the T to stop hiking fares.
  • I need something, fucking anything, to work correctly the first time and in the normal way, and not devolve into an endless series of hacks and workarounds to compensate for a lack of money and/or an inability to make my brain do that.
Am I pissed at people for not fixing these things for me? No. Most of that is unfixable. The things that aren't are probably not something you, personally, are in a position to remedy. Some of them are probably as much of an obstacle for you as they are for me. But none of those things are anything even remotely like 'I need to be hugged and wept over more'. That is not in the top ten. That is not even in the top thousand. It doesn't matter how many people love me if I starve. I need a lot of other things taken care of more than I need friends to pet my head and coo.

There are other things that may be unique to me. Uttering the words, "You're strong, you'll get through this," is a great way to guarantee I'll never tell you anything of import ever again. I just gave you a rundown of some fairly terrible shit going on, and your response was, "Wow, that sucks, good thing you can handle it without bothering anyone else. All yours, babe." It is the angriest and most alone I ever feel when dealing with this. Self-confidence and willpower do not fix all things, and your encouragement is not the one last magic push I need to overcome adversity. Disney movies are not documentaries. In real life, Dumbo cannot fly. He has to buy an airline ticket like everybody else.

I have had several people tell me that stress is undoubtedly a factor, with the implication that the problems will go away when I stop being under stress. This is tantamount to telling me that I would be fine if I could just stop having life events. While this is true -- you don't often hear dead people complain of joint aches -- this is also not helpful. Even good life events are stressors. Weddings are widely recognized to be hell on everyone, stress-wise, even if you're ecstatic over the idea of officially binding yourself to someone with whom you are deliriously in love. Stability is not necessarily a good thing, either. My life as a teenager was extremely stable, and I hated every minute of it. 

What is the practical takeaway from this? Mainly that 99% of the time you will never know anything is wrong with me, either because it's not worth mentioning, or because I'm lying to you in an effort to avoid having a conversation about it. I write about it here because I have this idea that my main talent is not being smart or funny or creative, it's figuring out how to put into words things other people really want to say but can't get out. It's the thing I get the most, and the most heartfelt, feedback on. Being kinda mutated and broken is a thing that people don't know how to talk about a lot, so off I go.

The 1% of the time I up and tell you that something's wrong, it is really fucking wrong. Stop trying to give me the help you think you'd want if you were me and let me explain what help I actually need. It's probably going to be something like 'please make sure I have a dinner break so I don't go ten hours without food' or 'please do not make me stay until everyone is done with their work if I've already finished mine' or 'please assign me the task that involves working by myself in a quiet room away from the rest of the group and then leave me alone to do it' or 'for the love of God, please figure out how to schedule things so I don't have to show up at 8am, my body thinks that's the middle of the night'. These are not a generalized bid for attention that can be soothed or avoided by assuring me I'm loved. I do not ask for accommodations unless I need them. I don't like being the special snowflake.


  1. This is on one hand an exceptionally validating post to read. It makes me say that I am not wrong for feeling the same way about the 'good wishes' when I am struggling because somebody else actually GETS IT! I am deeply appreciative of what you have shared here and the synchronicity of it being shared when I was struggling with my own bit of 'fun' of this sort is fantastic.

    On the other hand, I really wish that it wasn't necessary for this kind of post to be made. I wish that more people actually understood that giving 'pep talks' is not the go to solution 95% of the time. It makes me sad and angry that the knee jerk response of 'Oh, you'll do great because you're trying SO HARD.' is the thing that gets whipped out the most.

    It bothers me on a visceral level that the pity response happens more frequently than the 'what can I DO to be of help?' one happens. When did pity become the more acceptable form of 'help' that gets offered? If I were nearby and able to help, I would be doing active things like offering to bring you dinner so that you didn't have to worry about it when everything hurt and you were busy enough that you weren't sure if you had eaten. And I'd make a point of asking if there was something more helpful that I could do because I recognize that the person who knows what is most helpful is YOU because you're the one in the middle of it all.

    The mental masturbation of pity at the expense of people who are struggling makes me as angry as the flip side of the coin, inspiration porn. *shrugs* Maybe I'm just viewing things from the wrong angle, though.

    TL:DR - Thank you for sharing this. It helped me feel more sane on a bad anxiety day. I think you have an excellent point and I agree with you. ♥

    1. It's the same thing that drives "awareness" activism, I think. Oh, I've spread awareness! That's doing something! Not really. It doesn't matter if all seven billion humans on Earth are aware of something if nobody lifts a finger to fix it.

      My guess is that it's a side-effect of transitioning to an information based society. We're at a time in history where knowing about things is often more valuable than actually having the skills and opportunity to physically do them. We just haven't been like this long enough to reliably distinguish between when knowledge is needed and when practical skills are needed. Knowledge is easy to spread; knowledge enables you to make decisions; once you know some stuff, you're educated enough to tell other people what to do! It results in a lot of people doing nothing, and a few people doing a lot of stuff on terrible information.

      Also, the self-esteem movement. Or the whole general school of thought around it. "Everyone is a winner for trying!" is easy to mix up with "Trying makes everyone succeed!" People who grew up with a constant stream of participation trophies -- or, by contrast, being told to downplay their achievements so that no one else felt bad -- have this idea that doing your best will automatically mean triumph, and have no idea what to do when someone is doing their best and the world *isn't* fair, and that isn't enough. That's Not Supposed To Happen, so there's no plan for it. Failing at stuff teaches you the difference between 'I half-assed that and it didn't work' and 'I gave it my all and it turns out I'm not very good anyway'. 'Everyone's a winner' doesn't let you learn that.

      Basically, most of the current crop of adults grew up in a world that did not at all prepare them for stuff that sucks for no reason. Older adults are usually better. Someone in the family dies, they give their condolences, but they also know to show up at the door with a casserole.


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