Don’t Talk About That!

Here’s the biggest problem when you have chronic pain and you go to family dinners.

No. One. Wants. To Hear. About. It.

That’s not a problem if you have loads of other things to talk about – if you’ve seen lots of good movies, or you’ve read lots of great books, or you have a enthralling job, or you know oodles and oodles of fascinating people.

The thing is, if you’ve got bad chronic pain, you can’t really go out to see a lot of movies.Sitting for 2 hours in one place is kind of difficult, if not impossible.

And if you’ve got bad chronic pain, it’s hard to concentrate the way you need to when you’re reading really great books, so you can read one book over a really long period of time, or you can read lots of crap.

That enthralling job? Takes energy. Lots of energy. So much energy that if you do it every day, you’re probably not worried about dinnertime conversation topics, because you’re too fucking tired to go out for dinner. If your chronic pain is bad enough, you can’t do the job, at least not every day. And there aren’t that many really enthralling part-time jobs around. Or you don’t work at all, which is its own kind of embarrassing at family dinners.

As for fascinating people, you may know some from before you got your chronic pain. But if you’re in pain all the time, your friends tend to desert you (Hey, you, don’t stop reading! If you feel guilt for deserting someone who has chronic pain, I’m not letting you off the hook so easy!) and you don’t get out often enough to make new friends.

Often, your friends will be other people with chronic pain, many of whom you met online. And if the family doesn’t want to hear you talk about your chronic pain, they sure as hell don’t want to hear about your friends who have chronic pain. As for your friends you met online, they’re not “real”. If it weren’t for your chronic pain you’d have “real” friends, not people you met on the message board at the [fill in your disease] support group.

So you’re stuck at a dinner and someone says something relatively innocuous,  and you respond the way everyone else does, by talking about something in your everyday life, which should be innocuous and… someone tells you to shut up. Because they don’t want to hear about your chronic pain. Even if you’re not talking about your chronic pain, you’re just talking about something that makes it obvious you have chronic pain – they don’t want to hear anything about pain, or anything tangential to pain, or anything that makes them think about pain, or you, or your stupid pain.

If you don’t want to be told to shut up (and really, they will tell you to shut up), you have to police every word you say to make sure you don’t say anything that will make other people uncomfortable, which means you can’t talk about your everyday life, because your everyday life makes other people uncomfortable.

It’s hard to make conversation without ever mentioning anything remotely related to your chronic pain, because the thing about chronic pain is that it’s chronic. It’s not an abstract, it’s not transitory, and it’s not something you can leave at home when you go out to dinner. It’s part of your life, like eating and shitting and breathing.

So you are basically erased. You have to pretend your everyday life doesn’t exist. You don’t exist in that social space. What exists is a construct of you – a happy, shiny construct that has no pain. This often consists of memories of yourself before you got chronic pain. Or the parts of you that aren’t boring and irritating and discomforting and in pain. But it’s not the whole you, because that huge, chronic part of your life is a forbidden subject.

(One could argue that is what you have to do in every social situation. Point taken. But if you infringe on most other forbidden topics, it may be given a pass, or there may be an uncomfortable silence before someone changes the subject but rarely, if ever, will you be told to shut up, unless the topic is your pain or your disability.)

Don’t. Talk. About. Pain. Pain is forbidden.

And why not, eh? No one wants to sit around listening to you listing off your medical complaints. That’s what old people do, right? And the reason they do it is because they don’t have anything else going on at the moment. When you’re 90 and so few of the new movies are geared to your demographic and maybe reading is difficult and you no longer work and most of your friends are dead, and your rheumatism is acting up, that’s a major part of your life.

And when you’re 30 and your lupus is acting up, or your IBS is triggered, or your whatever has relapsed… well, you get the picture.

Now, talk of ailments is barely tolerated from the oldsters, and as soon as they’re out of the room, everyone mocks them for it. So, yeah, you better believe that if you’re 30 and you have chronic pain and you dare to mention it, you’ll be mocked for it the same way. Because old people talking about their ailments is not a function of them being old – it’s a function of them having chronic ailments, and those ailments being central to their lives.

When you are old and talk about ailments, you are “being old”. When you’re not old and you mention ailments, even in passing, then you are boring. You are self-absorbed. You are gross. You are no fun at all. But you don’t have that cachet of age, so instead of waiting until you leave the room, they will mock you to your face, and tell you to shut up.

If you told Grandma to shut up you would be called rude. But if someone tells you to shut up, that’s okay. Because chronic pain is a drag, man.

My advice to anyone with chronic pain, or any disability, would be to stock up on all the good movies and great books and job experiences and terribly fascinating friends that you can in those moments when your chronic pain isn’t so bad, and that way you’ll have something to fill the conversation gaps.

Or just don’t go.

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Published in: on April 5, 2010 at 2:35 am  Comments (7)  
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  1. Hi Haleth. I read all your blog entries and appreciate your comments. One of the problems with pain is trying to get other people to understand that you really are in pain when they can’t feel it. There always seems to be this underlying suspicion that you are making it up, especially if you go to the doctor and they can’t find anything obvious (like your arm is broken in two or something). I’ve thought that wouldn’t it be good if doctors could actually empathically feel your pain, I mean really, “I feel your pain” and then know better how to treat it. But then who would want to become a doctor?
    Hugs

    • Thanks for commenting, G. I hope to deal with that aspect of pain from as many angles as possible – the “you’re faking it to get out of fill-in-the-blank” aspect. Because pain is felt only by the person experiencing it, cannot be measured or quantified, and is subject to such a wide variety of responses, there is a lot of disbelief and moral judging surrounding it.

      Sort of makes you wish there really were empaths and mind melds, doesn’t it? That would sure make it easier to get treatment.

      As to who would want to do that for a living… I could hack it, if it meant my patients would actually be able to get the pain relief they need. Heck, I’m used to pain anyway;)

  2. Thank you. Particularly as someone who’s been told I’m too young to have my disabilities, as well as the “Ouch” words that accompany them, this really resonated. Thank you.

  3. You’re welcome. I’d like to explore the age/pain/disability issue more in the future. Anything you could add to the discussion would be greatly appreciated. It’s time for those of us with the pain and the disabilities to speak for ourselves and not let preconceptions and stereoptypes stick us in a box.

  4. Hi!

    I wanted to add a different perpective and see if you relate.

    As a child, I used pain and illness as a way of getting attention. It exists and it is real, but I think I’ve tried to use it to get more sympathy.

    Just to give you background: I was abused daily and brutally every day by my mother, and my Dad used to completely ignore me.

    Unless I was sick.

    When I was sick as a child, my mom would quarentine me in my room and leave me alone all day, until Dad got home. She was so terrified of getting sick herself she would not come near me. (YAY!!:) Dad would come home and feed me, help me, read to me, give me medicine. So I got the attention from my Dad I never usually got, and mom avoided me. Win/Win, if you can call it that.

    As I grew older and I continued to have issues with different areas, particularly my hip, I felt much more embarrassed by pain or complaining. For one thing my father raised me with the idea that I should suck it up, take it, don’t favor it, keep moving.

    As an adult, inevitably people ask when they see me limp.
    I despise that. I know they think they are being nice, but I am so mortified by my explanation and sick of telling the same story over and over. I’m sick of hearing myself tell it. Sick of the expressions of horror and shock. One side of me wants to scream it’s none of your gd business- leave me alone. I’d rather suffer alone than have to endure the pity and distain of people.

    I was going through e-mails one day a year ago, and I noticed over the years how many times I talked about being sick or in pain. After several dozen messages I started to see myself in a new light.

    Not oh the agony I’m in, but “wow, look at how STRONG I am to endure these things and be alive, and so optimistic and pretty successful too.”

    I made a specific decision. I started a campaign inside my soul to be mindful of my thoughts about myself. I have some serious self-sabatoge issues from the past around that. For me, the more I speak about “poor me” the more I actually feel worse.

    That being said, I live with pain every day. Excrutiating pain. Pain that exhausts me and makes me feel like I cannot go on. Sometimes I can’t even breathe, my leg hurts so much, and sometimes I cry from the pain and a feeling of hopelessness. I’m 34 and I cannot grocery shop without the assistance of a cart. I have dark, awful days. I’m fortunate that my will is strong and those days don’t happen that often, but when they do they swallow me up completely and it’s nothing for me to spend all day thinking of ending my life. During that time it’s actually my Bunnies that pull me through, because I know they are depending on me. :)

    But the way I pull myself out? I have several things I do, if I can catch the mood change fast enough I can avoid the trip to the dark side.

    I am fortunate that I have hip replacement surgery in a few months. That is offering me hope. I realize it is going to involve more pain, much worse pain, before it gets better. But the HOPE…of getting up pain free, being able to stand and walk for longer periods of time…that is what I hold onto.

    Also singing REALLY helps me. It opens my lungs and gets my blood pumping and the sensation of being that open is so theraputic and feels so good. I sing for my bunnies, while cleaning, especially if I am in pain which I always am when I’m cleaning.

    When I’m cleaning the apt, I have to take a break every 10 – 15 minutes to rest and gather myself. I have to rest to get control of my breathing and check my emotions. For me it is the utmost importance not to allow mysef to become emotional when I am in pain. I have to hold on and control it until I’m done with what work I have to do. It takes alot of will power, especially when my pain pills don’t help. Chores take forever but I keep telling msyelf I can DO IT, push through the pain, keep going. I picture myself as my astrological sign, a strong, stomping, fired-up bull, not about to give up or give in, head down, horns first, and f&^% you, hip pain, I will not let you master me! Those are literally my thoughts. Sometimes that is enough to keep me going.

    Other times I have to admit my situation and just rest. It’s a tough pill to swallow. But sometimes my body just will not cooperate, it’s beyond mind-power, and I can’t do it.

    Unfortunately those times have become more frequent recently. I am trying fiercely to harness what would be shame and turn it into motivation, to eat healthy, to do my pre-op excerises, to take my vitamins, and keep my attitude up. It’s all so that one day I can be normal again. Pain-free, if I dare hope.

    I also love meditation and self hypnosis. I have found this to be an important tool for me in dealing with pain. Going to my “happy place” (hint: it looks like an x-rated Andi in Wonderland) pulls me through many difficult situation both emotional and physical.

    OH! We should talk about that- emotional and physical pain, the differences and stuff.

    oxox I love you and thank you for letting me express these thoughts here!!
    -Andi :)

    • This is exactly the stuff I’m talking about here!

      Oh, Andi, how I wish things could have gone differently for you when you were a child. But they didn’t and here you are – smart and beautiful and strong. I hope you’ll continue to share your thoughts, and I really would love it if you could do a diary of this healing you’re doing. I know it’s going to be rough, but dammit, you’ll come out the other side with more mobility, less pain and a shiny new hip!

      Any time you need to vent or want to talk or would love to share, you know where to find/message/email/phone me. Much love.

  5. I do plan to keep journalling, and especially when I’m *in it*. I really want to write music as well. In the past when I’ve been in the worst situations is when I write and paint the best stuff.

    Thanks to heavy duty therapy I’m 90% ok with the past. I still occassionally get triggered but it is less and less.

    Yesterday the full unedited version of Disturbed’s “Down with the Sickness” came on, and I did an experiment: I listened to the terrible “bridge” part of it to check for my reaction. It’s the part where he’s screaming about his mom hitting him. I got a dull ache and a pain in my chest, but I was OK. The part that pleased me was the emotion I felt was anger (at how someone could hurt a child like that). This is progress because only 5 years ago, my reaction would have been cowering terror, fear and anguished brokenness. So in other words, now I can seperate myself as a strong adult woman, instead of instantly morphing into the child victim. This is a GIANT step forward, something I am very proud of. :)

    I’m so well trained from years of dialectic behavioral therapy that as soon as I felt the anger, I immediately started using breath control and within a minute I was fine and moving on to get the bad thoughts out. :) I really have come a long way, I think.

    But watching the news, hearing about a baby or a child that has been hurt, killed, or otherwise. I can scarecely control the anger sometimes. I get the urge to desperately hurt the adult perpatrator. Animals and kids- no matter when or where- I cannot tolerate them to be hurt.

    I know it sounds silly, but it cuts me to the heart even seeing precious dead animals in the road. Possums, skunks, racoons, all of them. I always say bless their precious spirits and give them peace and happiness in their next lives. All animals have souls, hearts and feelings.

    I will indeed keep writing! :)


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