Words, Language, Context

I had a conversation with Dorian the other day after he posted You Don’t Get It on his personal blog. He said:

My brain doesn’t really work like everyone else’s. So when you say you “know exactly what [I’m] going through”? You don’t, really. You know the same result – a paper not getting written. But you don’t really seem to explain the process that gets me to that point in my brain. It’s frankly kind of agonizing–I want to write that paper pretty badly! You don’t get it.

People didn’t like this comment of Dorian’s. [It also went ’round Tumblr for a bit.] One commenter said:

What exactly do you want people to say when you describe something like this? That you are the only one that goes through it? I can understand the hardship that you may be going through but that doesn’t mean someone else can’t experience too.

When I responded to this, I took the analogy away from struggling to complete tasks and to something that most people will see as a “real” disability [yay, disability hierarchy!!!!].

I do not have a chronic pain condition, nor do I get migraine headaches. When I’m in pain, my joints ache. I feel tired. My muscles are sore. I want to lie down.

I take some over-the-counter drugs, or have a bath, or nap, and usually wake up with little to no pain and go about my day.

When Don talks about his experiences, he talks about being in pain. His joints ache. He’s tired. His muscles are sore. He wants to lie down.

He takes a wide assortment of drugs: two doses a day of 12-hour morphine, a daily dose of oxycodin, the associated drugs to deal with the side-effects of both of those, and a few other things lying around for “breakthrough pain”, one of which we have to sign for before we take it out of the pharmacy, and another of which our regular pharmacy doesn’t carry routinely. He’s a full-time wheelchair user so he can leave the house more than once every few weeks. He spends most of the day lying down.

We use the same words to describe our pain.

Dorian also uses the same words to describe his difficulties in completing tasks that I do. When I’m procrastinating, I’m quite happy to tell anyone who will listen (and several who will not) that I’m procrastinating and having troubles and words won’t come and make my essay/blog spot write itself now please.

But my troubles are not the same as Dorian’s, anymore than my pain is the same as Don’s.

We just use the same words.

My point isn’t that people with disabilities need to use different words or that currently non-disabled people need to use different words. It’s that words come with context. When Don says he’s in pain, he’s typically talking about his chronic pain condition. When I say I’m in pain, I’m typically talking about having sat wrong for a few hours.

Context matters.

By 8 April, 2010.    language, normality, social attitudes   



16 Comments

  1. Thank you for this post, Anna. I think you really got at something which I wasn’t quite able to articulate in my post (which is what resulted in some of the…less-than-great responses I got). Context matters.

    I’d like to point out, in passing, that that comment is from a family member (my sister). Which throws an additional complication into the situation, and makes the dynamic really, really weird.

  2. I have to admit, when I read that post I was struck because it so precisely described my experience of what happens when I’m not getting something done that I want to be getting done. An experience that I know for sure isn’t universal (because I know a few people for whom it’s a baffling idea), but which also seems pretty common among friends and family members whom I’ve discussed it with. That doesn’t mean that it’s exactly the same as what Dorian is experiencing, but is there also room for discussing commonalities that turn out to exist even where we think they don’t?

  3. I think It depends on what you want to accomplish when discussing those commonalities.

    There’s commiserating with folks you know who are in a similar situation, and then there’s telling someone with a disability you know how they feel.

    It’s not like I don’t talk about being in pain with Don, but when he’s talking about being in pain, I respect that we’re not talking about the same thing. I think that part is important.

  4. Anna, you make some very good points. Also, I want to say that of course, no matter how similar you think your experience is to someone else, your ideas about your experience do not override that other person’s lived experience. Even with other PWDs, it sometimes gets frustrating when they think they can relate, but then go on to use their own experience to dictate mine. I’m sure I do that the other way around sometimes, too.

  5. My favourite experience with this was when I tried to explain how my clinical depression had caused me to need more semesters to through university. I tried to explain about troube with concentration, trouble sleeping, inability to retain knowlege and the general struggle to motivate myself.

    Her response was that she totally knew what that was like, and maybe she had depression, too because sometimes she really hated studying and had to talk herself into doing it. Because having a bad week at uni is totally the same as not being able to get up and dressed for a month.

    I don’t deny that she has trouble with studying, but no, that’s not the same. Even if we use the same words to express what is going on with us.

    I have found in the past that I have an easier time with people asking questions instead of simply proclaiming their thoughts as fact. Like, someone asking me “Is your depression like (this thing that zie has personal experience with)”. I can deal with that much better, because I can explain, maybe along the lines of “well, it is like that but with all these other things combined”. It makes me feel that the person is respecting that I know my own experiences best and is just trying to use her own as a point of reference, instead of proclaiming that zie has the exact same experiences.

  6. When I had the time and the energy and someone who was prepared to listen, I used to describe my pain like this:

    1. Have you ever had toothache? (And if they said no I substituted earache, tonsilitis or something until we found something within their frame of reference.)

    2. Have you ever had it over a weekend when you couldn’t get to the dentist/doctor for effective pain relief? Do you remeber that feeling? Of not being entirely sure the pain wouldn’t drive you crazy before you got treatment?

    3. Okay multiply that by about a hundred, and that’s your BASELINE level of pain. Twenty-four hours a day, seven days a week, AFTER you’ve taken your regular medication. I doesn’t matter whether you’re standing, sitting or lying down, that pain is going to be there. You can’t do anything about it.

    4. Now imagine that every so often, without warning – once or twice a day, or once or twice an hour, you never know which it’s going to be – someone comes along and punches you in the face. Those are your pain spikes – it might happen because you’ve been forced to sit in one position too long, or because you’ve had to walk ten steps further than you really can, or it might happen just because. And you can’t do anything about that either.

    5. How well do you think you would function under those conditions?

    And still only about half the people I took through that process really got why my pain was different from theirs.

    I had a conversation about a disability issue on my journal recently with a real-life friend, and she started out with the ‘oh, well, that happens to everyone to some extent …’ attitude. But over 4 days we talked back and forth about how my experience as a person with a disability was different from the ‘everyone’ she was talking about, and in the end she did get why the disability made a difference.

    But looking back I realised we could not have had that conversation in real time – face to face or on the phone. Her initial thoughtless remark made me so angry I had to take 24 hours to calm down before I replied to her. She in turn took another 24 hours to think about what I’d said, apologise and ask some intelligent questions about the issue. And then we really talked.

    If that had happened face to face, I wouldn’t have been able to articulate through the anger. I wouldn’t have been able to educate my friend, and our friendship would probably have been damaged by the incident. But because it was on my journal – not instantaneous communication – I think we’ve come out with a better understanding.

  7. My sister does this all the time. I’m sure her foot hurts, pain is pain.

    But I’m glued to the couch afraid to move and she whines about her foot as she gets ready to go out with friends.

    Luckily she hasn’t pulled similar nonsense with depression, because she’s not crazy and doesn’t need a shrink.

    Though her language yesterday was so similar to mine. “I’m afraid it (friend’s death) will hit me and I’ll cry and cry.” She doesn’t know what it’s like to have a bad mood come out of nowhere and leave you a tense mess, ready to snap and not knowing why.

    My mom – on her frustrated days – tries to draw connections between her pain issues and mine. But it never works so she drops it. All it means is that when we’re alone in the house together, it’s “who’s in worse pain? who will do the dishes? when is Becky coming back again? BECKY!!!!”

  8. Her attitude about therapy and psychology, not mine.

    In fact, I tend to interpret things as if people are depressed, when they’re really just stressed or homesick. This annoys my sister to no end. “See a therapist on campus, it’s bound to be cheaper than going through insurance! It won’t hurt, you know how messed up our family is.” “I’m not you.”

  9. For what it’s worth, Lauren, I’ve got diagnosed depression, and I started getting treatment because of problems with things like homework. I’ve pretty much always been able to get dressed, but I’ve been hospitalized and on six different kinds of meds. It’s never a good idea to say that you totally understand someone else’s experience, but neither is writing off someone else’s experience because theirs isn’t like you.

  10. I can think of a whole bunch of things that I want people who don’t have the same/similar difficulties as me to say instead of “I know exactly how you feel.” I, personally, prefer to hear “That sucks, dude.” Why is it so hard for people to understand that, sometimes, trying to empathize by comparing experiences isn’t exactly a good choice?

  11. Incidentally I’m commenting while in pain, (the lying down wrong type) the pain is fairly harmless (hello hot water bottle) but I get panicky and think of dying. You could easily dismiss it as hypochondria, if you haven’t been hospitalized while autistic, which is a frightening experience to know that doctors may not treat you if you can’t control your behaviour. Also drugs work differently on non-neurotypical people so they’re not usually an option which is also frightening.

    The word “pain” may always be the same, but I think mental states get appropriated by wrong word usage. Like when we say “reading a sad story is so depressing” a person with depression (like lauren upthread) will have trouble describing their experience. They shouldn’t have to say “I have real depression.”

    One everyday experience that people don’t seem to get is sensory overload, I’m so tired of explaining that noooo it’s not the same as “annoying”.
    .-= Kowalski´s last blog ..Freedom of Speech =-.

  12. doorslam, you’re right of course that sometimes, problems with homework can be one of the first symptoms- in fact, they were for me. My field of study (law in Germany) actually has a pretty high rate of people becomming depressed, because of the amount of work, the severe competition, profs always telling us how hard it will be to pass the exams etc. My therapist sees several law students, many of whom suffer from anxiety about exams. It is hard enough for those who don’t have mental health issues. And while I do not have the personal experience, I am sure this is also happening with other fields of study.

    I shortened the exchange for posting here. We had a longer conversation about what her trouble learning was like, and she was basically refering to a one-time incident when she couldn’t motivate herself to learn that had happened a year ago.That’s why I don’t think her particular trouble learning back then was a symptom of accute clinical depression she has now. Which doesn’t mean that she could not possibly have any (mental) health problems, just that I don’t think that particular experience of hers compares to mine. And what really bothered me was that I had taken a risk by telling her about this, and it felt to me that she was minimizing what I was dealing with by saying that her one-time problem was just the same. And it is possible that my hurt made me more critical of what she said than I should have been.

    Thanks for calling me on it.

  13. “My field of study (law in Germany) actually has a pretty high rate of people becomming depressed, ”
    Oh dang, now I’m so tempted to joke about it (which I don’t want to obviously) German laws are so notoriously complex and numerous it’s obnoxious. I’ve a government pamphlet on disability rights laws. The pamphlet is actually a book, a *real* book.
    I’m not surprised to hear that people who study German law risk depression.
    .-= Kowalski´s last blog ..Capital N Neurodiversity =-.

  14. What I, personally, like to hear when someone is trying to commiserate is something along the lines of “I have had an experience sort of like that, so I can kind of relate in that I can imagine some of the ways it might be effecting you based on my own experiences” or “I know it’s not the same thing at all, but I once had X happen and it was a bit like that, and it made me feel Y, so I can understand why you’re feeling YYYYY”.

    Examples:
    My mom has obsessive compulsive behaviors but not the full disorder, so she “gets” a lot of my OCD stuff but also knows it’s much more life-encompassing for me than it is for her.
    My bestest friend has a lot of the same health issues as I do, and we’ll often admit that we don’t know for sure whose pain or fatigue or whatever is worse (if such a comparison can even be made), but we do know how much it sucks to live with such a thing, so we can empathize with one another.
    I get migraines on occasion, but some of my friends get much worse ones and with much greater frequency, so I use my own migraine experiences to empathize with what they’re going through – even while knowing their experiences are more severe than mine.

    I think that’s what many people are *trying* to do when they say things like “I know exactly what you’re going through.” None of us knows exactly what anyone else is going through, so it’s ridiculous to say such things. But we can use our own life experiences to relate to the best of our ability. It’s just so important to remember, in doing so, that the other person’s experiences are not Exactly like ours. Ever.

  15. There are ways that it can be done in good faith, and then there are times when “oh, yeah, I feel that too” is really just a way of silencing. It’s like they are saying, “please stop talking now, I know exactly what you are going through but I manage fine, so I’ll just assume that you can too and if you are still complaining it’s because you can’t be bothered/are too lazy/not strong enough/whatever to get through the way I did!” I feel like people more frequently use the second style with me when I talk about my mental issues than my physical issues.

    I’ve had both chronic pain and non-chronic pain. I know that I don’t always experience the same pain the same way, so how could anyone else possible know exactly what it was like? But I use the same words for both, too. And the most uncomfortable sensation I’ve ever felt I still call “tickling”, for lack of a better word. I suppose it is like colors; any word describing nervous system response to stimulus is going to be subjective.

  16. One time I found it easier to draw on healthy people’s experiences to make them understand what happened.

    When the calcium was low, my legs tingled all the time. The best way to express it to people was to say it was like when your legs fall asleep, only you can’t shake it off.