(Perceived) Suffering

Yellow sticky note with text, "The reason it seems like no one understands what you're going through is because no one understands what you're going through."

Pain is inevitable. Suffering is optional.

I’ve seen this quotation before in a few contexts and attributed to different (ish) sources (or un-sources). It’s a multifaceted and sometimes emotionally charged concept for me, and today, I’m particularly thinking of it in terms of outward appearances.

Very often, there’s a discrepancy between the amount of pain I have and the amount of pain others perceive me as experiencing because of the degree of suffering I exhibit. Sometimes this results in folks thinking I’m in more pain than I am; other times, the result is people thinking I’m in less.

It’s like there’s this Magic Rule™ that people in pain must display a great deal of (visible) suffering. To do otherwise results in others dismissing the pain as “not that big a deal.” Which, when the others in question are friends, acquaintances, or random strangers on the Internet — relationships where there’s not really an inherent power hierarchy — is usually not a big deal to me. I am pretty well at peace with my decisions as to how to respond to stuff like this and do so according to the individual situation. (With the caveat that one reason my close friends get to be my close friends is that they generally believe me when I tell them about my own self, and I would be taken aback if someone close to me suddenly reversed that.) However, when there is a power imbalance present — as with a patient seeking treatment from a health care provider — this divide between perceptions can have big time concrete consequences. It is often tearfully frustrating to have providers dismiss or under-manage pain because I’m “holding together” or “functioning well” at the time of the conversation.

This brings me to a tricksy bit of aforementioned Magic Rule™: While people in pain must display a great deal of visible suffering, displaying too much suffering, or the wrong kind of suffering, or the right kind and amount of suffering but at the wrong time (and “wrong” can mean either “inconvenient” or “too convenient”), renders claims of pain suspicious and potentially exaggerated or invalid. When I’ve burst into tears after having doctors decide I’m “holding together” too well for different pain management — because I was frustrated as that wasn’t what I’d told them and because the thought of continuing on the same ineffective regimen was piss-my-pants scary — some former (for a reason) providers deemed my tears “staged,” and thus that I was manipulating them because I wanted more drugs. Which, yes, I wanted more effective pain relief, but I don’t consider expecting my health care provider to provide health care manipulation, exactly — more like doing one’s job.

The appropriate type and amount and timing of suffering depend a lot on who is observing and interpreting and judging said suffering. It’s a clusterfucking guessing game that is not terribly compatible with being in significant and chronic pain, but we don’t always get to choose whether or not we play.

On top of all that, here’s this perplexing truth: Sometimes, even when I am in a great deal of physical pain, I am not suffering as much as — or in the precise ways that — others expect me to be experiencing. For some people, at least, there’s a narrow and rigid “right” way to be in pain, only that way is not always what serves me. Sometimes there’s a feeling of guilt or other unease that places tension between what I want and the boxes others want to check off for me.

At work this morning, I mentioned not wanting to deal with stairs because I was having a pretty bad pain day. (For whatever reason, going up and down stairs aggravates my hip pain in a way that walking on the flat does not.) At lunch, to one of the same coworkers, I mentioned having tentative plans to see a movie tonight. My coworker blinked at me and said, “But I thought you were in pain?”

It’s certainly possible that she thought my prior statement suspect. However, it’s also possible that she simply couldn’t wrap her experience around a situation where one fairly short activity (stairs) is less possible while another comparatively long activity (movie) is more possible. Similarly, I’ve also found, when I’ve talked to folks, that it can be difficult to imagine enjoying anything while in pain — and ostensibly one goal of watching a movie is enjoyment. Enjoying life, however, doesn’t always fit into ideas about the “right” way to do the whole pain thing. I’ll admit, sometimes it’s damned difficult for me to enjoy things while I’m in pain, and there are certainly days when I turn into a huddled, miserable wretch.

But not every day is like that, and I think it’s utterly human and worthwhile to seek joy, even in the midst of pain. And yes, I am certainly defining “joy” as “cheap beer and a claymation zombie movie,” which is the Movie Event that got postponed after all on account of end-of-week fatigue. Because who doesn’t need preposterous zombies? They let me realize that even if I hurt, it is still better than awakening the undead and having stop-motion Play-Dough brainz ooze out my skull.

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I'm here. I like stuff. Some other stuff, I like less.

Posted in MenstroMonster, non-asana
4 comments on “(Perceived) Suffering
  1. L. says:

    I really appreciate this post.

    I’m often faced with a real dilemma in making choices about how much to express my pain. First, as a daily migraineur I spend a lot of time being on the edge of pain – such that I’m not feeling shitty *yet*, but I could get there at any minute if I make a wrong move. It can be hard to explain to people that even though I’m not in a lot of pain right now, I need to take it easy. Second, there is the fact that expressing suffering often actually increases my pain – for instance, I can never let myself cry about a migraine, because the swelling in my face will increase the pain several fold. Even basic things we tend do as humans, like wrinkling our forehead muscles or tightening our shoulders with the experience of pain, will make my pain worse. So I have to maintain the kind of physicality I’d have in a pain-free state, and this tends to look as though I’m relaxed and feeling fine.

    • Tori says:

      I have a similar sort of experience. My pain tends to be centered in my pelvis and — when not “okay” but not terrible — tends to be helped by gentle movement. And it’s sort of tricky to explain to people: 1) no, I am not getting up and moving just because I’m bored/tuning you out; 2) no, I don’t actually want to be sitting right now as lack of (gentle) movement usually makes things worse.

      And it sort of strikes me as odd because I am usually expressing suffering in the way that is natural and therapeutic for me. But because it usually doesn’t match what other people think I “should” be doing, it’s often questioned.

  2. kat says:

    There is also the wonderful double standard of thinking you are fine because you are not complaining, but getting upset if you DO complain because they are sick of hearing about your depressing icky medical issues.

    • Tori says:

      Very true.

      In situations where I don’t verbalize it, I get told to speak up more.

      In situations where I do, I get told to shut up more. In nicer words, but the sentiment is there.

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