Thursday, August 12, 2010

Pain: Attitudes

**Likely to become the first part of a series of articles about multiple posts about pain, pain management, and whatever related issues stay in my head long enough to write about them. I thank you for your indulgence! On another note, this post is rather more stream-of-consciousness that I would like, but I decided non-linear writing was better than none at all. It may take a while before I really find a voice and style for me.**

Pain is a complicated issue. Depending on what you are dealing with, and your own personal tolerances, almost anything can cause pain. It cannot be objectively observed or measured. It is difficult to categorize, although we have tried: intensity, duration, origination, any sense of cause, and various descriptors (shooting, throbbing, stabbing, etc…). What I want to discuss here is attitudes about pain.

Often, before I even mention pain to others, I have to overcome classic attitudes I have internalized, the largest being “is this important enough to bother someone els with it?” followed by “am I being a wimp?” I have found that the fear of wimp-dom keeps many people from talking about their pain at all, or at the very least only to those people that are trusted. If I do not trust you, I will never bring it up at all, or I will bypass a pain related issue by making a weak overall health generalization, if forced (which I hate, thank you very much).

Having discussed this with other people in person, frequent reading about pain issues (particularly involving health care professionals), and my own personal experience, I find one major impediment to the acceptance of a personal declaration of pain. In the US, acknowledging pain is a de facto admission of lack of personal fortitude.*

Pain is pain, and if you have it, you already know that. If you have chronic pain, then you know that there is nothing in your life that it does not touch: emotional health, relationships with others, concepts of self and the ability to function at all to varying degrees. External responses to pain can vary from case to case. If you are screaming in pain with part of your tibia sticking out of your leg, the people around you will have two goals: one is to seek help for you, and the second will be to get you to quiet down. This quieting is multifold; to keep you coherent and avoid shock, and to comfort the unease other people feel at you displaying your pain. If you have chronic, invisible pain, you will likely be dismissed altogether, and experience a very uncomfortable social atmosphere as people (both internally and maybe even externally) wonder if your pain is ‘legitimate.’ If you talk about pain, people often seem uneasy and hurry to change the subject.

USians seem to have a Puritanical view of admitting to feeling pain, or having the audacity to *gasp* complain about it. This admission is seen as a lack of fortitude, or of character. Let me unequivocally state that there is no moral failing in feeling pain, nor in seeking help to alleviate it. None. Nada. Zero. You do not have to take any flak/guff/grief from anyone, including health care professionals, about insisting that you are in pain and need help. With the exception of medical professionals, you should not ever have to prove to anyone that you are experiencing pain. The health care system is more likely to take your pain seriously if they can find an underlying cause. Otherwise, you may be out of luck until they do. Be insistent, and do not let others negate your analysis of your own body and situation. You do not have to justify the use of any pain aid; not OTC analgesics, not opiates, not woo. Whatever works for you works for you, and may you have luck in finding that quickly, with a minimum of backlash.

Chronic pain =/= less of a person.

I have been in chronic pain for over a decade, from various and numerous causes, and have seen these attitudes consistently. So consistently, in fact, that when I do not see them, I tend to ask if the person in question has themselves has experience with (or with someone else with) chronic, unrelenting pain. Only a very few have acquired any sort of understanding without such experience.

I cannot begin to measure how much pain and misery I put myself and by extension, my family, through due to my own unwillingness to acknowledge that I needed help. Then I had to spend months convincing my health network of the truth of this. I think that talking to docs and whatnot about pain will probably be another post.

*I know I am both generalizing and specifying in ways that may be problematic, and I am interested in knowing how this plays out in other areas.

10 comments:

  1. One aspect of coping with chronic pain that I've observed is that even when you can get medical professionals to take your pain seriously, it seems that many of them fear DEA repercussions if they over-prescribe effective painkillers. Too, I think that there is not enough emphasis on medical education in palliative care, so many general practitioners are unaware of how best to provide effective care for chronic pain. By nature, they are trained to keep looking for a way to eliminate the underlying cause of the pain, and have difficulty adjusting to the concept that sometimes this just isn't possible.

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  2. I agree! Palliative care seems to be extremely undervalued, in my opinion. GPs also seem to be more uncomfortable in dealing with patients with chronic illnesses, even when they are gateway providers and coordinators.

    I have heard docs hint that they were worried about that, and I am looking at those DEA figures -- they are not really filtered, and I have to go through each instance individually to determine if each case is actually related to prescribing pain relief, because other offenses are also in the same list.

    I do plan on a more focused post regarding talking with your medical staff about pain, and the way I almost died because I screwed it up and they did not catch it. *sigh*

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  3. I'm British, and we too have an aversion to admitting pain. We 'must' carry on, push through it, be 'brave'. It's one of the final frontiers of the 'stiff upper lip' mentality.

    I'll hold off on taking pills, berate myself for being 'lazy', then gasp in surprise when a doctor says "I wouldn't let a dog live like that, it's inhumane" after I indicate only a fraction of the pain I'm in. I almost fell off my chair in surprise when my claim for disability benefits were accepted without the need for appeal, when that almost never happens. I thought "Wow, I guess I am ill, not so idle, perhaps I should go easy on myself?"

    Do I? Do I hell! Will I reply, when asked "So how are you?" with "I wish I had a suicide button on my arm. I wish every nerve wasn't throbbing, that breathing didn't hurt, that I could escape this hell for even five minutes." No I won't. I'll say "Not too bad thanks, a bit achey, mustn't grumble" when what I really mean is "I'm in pain, I hurt, I'm vulnerable and scared."

    Thanks for cementing my thoughts with this post.

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  4. @Burtie -- thank you for your reply! I really appreciate you voicing your point of view. I kind of assumed that British attitudes would be similar, but I hate to generalize more than I already do.

    When folks (particularly bureaucrats or medical professionals) acknowledge the fact of my personal pain, it always surprises me too. I always shy away from emphasizing the sheer brutality that it can reach some times, you know?

    Again, thanks. I think the more we talk about stuff like this, the easier it gets to, you know, *talk* about stuff like this.

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  5. Because I have no firm diagnosis for the root cause of the pain I am in, I sometimes find it difficult to convince medical professionals that what I am feeling is 1. genuine and 2. what I am really experiencing.

    The main problem I find myself dealing with in regards to the pain I am in is that I continually blame myself for it. I obviously did something wrong to be causing it, so it must be some sort of punitive damage. This attitude makes it harder to talk about it and deal with it.

    Most of the time, I find myself wishing that I had a broken bone or an obvious open wound. It would be a lot easier if I could just point to a discrete cause of the pain and say, "Docs, treat that." Then they would and the pain would just go away. Hopefully.

    Until then, I'll take my meds and try to fight the need to blame someone for the pain.

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  6. @dqsweetie84 I understand, I went through that for a long time, and apparently am going to go through it a bit more. *sigh*

    Will you be mad if I tell you I thought about you when I wrote this, and hope that it helps you, as much as anything like this can, anyway...

    Gah, the blame game! And it seems you have to play it coming and going. When I really looked at it, for me, it came down to the idea that if /I/ had caused the pain, then /I/ could control it. So I was really trying to create control when I really had none.

    Yeah, I've felt that way too -- wished for some sort of physical manifestation that I could point to, both for docs to treat and people in general so they would at least /pretend/ to get it.

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  7. I have been dealing with low level chronic pain for years. I have always found it difficult to complain to my family about the pain, because I don't think that they actually believe that I am in pain, or that it means that I can't be as physically active as they are. When they all helped me move recently, I felt extremely guilty that I wasn't able to help doing the actual lifting a moving. So, inevitably, I ended up pushing myself to hard and was so wrecked the next day that I could barely move. And yet the whole time we were moving, I kept feeling like my sister was giving me accusing looks, like I was being lazy. It made the whole process more stressful.

    Also, I have often found myself worrying that the pain I feel is a result of hypochondria and I am not really in pain. I also struggle with this feeling when I am around people who experience much greater chronic pain. I feel bad discussing my pain when I know that those around me are in much greater pain. I feel like I don't have the right to experience and share my pain, when it pales in comparison to what someone else might be going through.
    ~tigerhorse

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  8. @tigerhorse It can be incredibly difficult to get others to acknowledge pain if they do not see just cause for it. Sometimes it really confuse me -- folks will disbelieve even people they normally consider to be very truthful. I have yet to understand it.

    Yeah, is it not strange that this goes so far that sometimes we will disbelieve *ourselves*?

    Ah, I think that it is good when folks with chronic pain talk about it. It is not anything to be ashamed of, you know? And it is not some Pain Olympics we can win or something, where the worst pain gets the talking stick. =) Ack, I mixed my metaphors there, sorry about that. I think of it as a bonding kind of thing, where we can be free and honest about what we are dealing with in our lives.

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  9. Also, when we, as women, go to the doctor for our pain, it is not unusual for them to suggest our pain is a result of depression or psychosomatic in some way. Few things in my life have made me feel as hopeless as that. It was as if they were saying what I was going through was not real, even though I was practically screaming "HELP ME!"

    AHodges

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  10. @Ahodges - Agreed. Since men are perceived as stoic, and often fight hard to adhere to that stereotype, when they site pain it is, in my experience,taken seriously.

    I understand. At one point, I had to undergo a battery of neuro-psychological tests and therapy to prove that I was not malingering (lying), a hypochondriac, suffering from Munchhausen's or otherwise had it all "in my head."

    When the results came back, I did something I do not think they had seen before. They started treating my pain, and I told them "This is funny, now that you trust me - I do not trust YOU."

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