How Lonely Can Pain Be?

Today's post from www.psychologytoday.com (see link below) looks at a very important side effect of chronic neuropathic pain (irrespective of the cause) and that is loneliness. The psychological effects of long-term pain should never be underestimated and can be just as damaging as the physical problems. It's important to seek help if you can and not neglect it or try to shrug it off as being inevitable. In the end, many people end up in a vicious circle of pain and depression, each of which worsens as a result of the other. Well worth a read.

Listening to Pain: Finding words, compassion, and relief 
The Loneliness of Pain
Acknowledging the isolating quality of pain
Published on August 24, 2011 by David Biro, M.D., Ph.D. in Listening to Pain
David Foster Wallace, the acclaimed writer, suffered from depression. The first line of a short story he wrote captures one of the most under appreciated but devastating insights about the experience of pain:

The depressed person was in terrible and unceasing emotional pain, and the impossibility of sharing or articulating this pain was itself a component of the pain and a contributing factor in its essential horror.

Part of what makes pain "painful" is its privacy and unsharability, the feeling of aloneness. That goes for physical pain as well as psychological pain. "Nothing is quite so isolating," writes Robert Murphy in a memoir about his struggle with cancer, "as the knowledge that when one hurts, nobody else feels the pain; that when one sickens, the malaise is a private affair; and that when one dies, the world continues with barely a ripple."

This under appreciated feature (to that outsider, that is) is especially true for pain that persists, chronic versus acute pain. When you break a bone, the pain can be excruciating and isolating for hours or days, but once it lets up, you can return to the intrinsically social being that defines our species. When the pain goes on for months or years, as it does for people with back pain or fibromyalgia, it becomes more and more difficult to reintegrate oneself into a world that has no idea what you are experiencing.

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Pain causes this rupture because it inverts our normal perspective. Instead of reaching out to other people in work or play, we turn inward and self protective. This is an instinctive, understandable response. Something is wrong inside of me and so I must attend and focus on the threat and make sure it doesn't get any worse.

But while the pain inside looms so large for the person experiencing it, it is often invisible to the person viewing it from the outside, a doctor, a spouse, or a friend. Even when they see something wrong on the surface of the body, a bleeding wound for example, they don't "see" the pain, which may or may not be as severe as the person claims. And when there is nothing to see on the surface, in the case of migraine or neuropathic pain, the doubt only increases: How can one be sure? And even if the outsider believes the sufferer, it is difficult for him or her to imagine what it's like or how severe it is (how easily the pain-free forget past pains); or at times, the outsider simply doesn't want to hear about the pain over and over again: Enough already, what's so important to you is not so important to me.

When you combine a sufferer who sees only his pain with an outsider who can't see it at all, the result is a widening of the normal barrier that exists between people. A great wall has suddenly sprung up. I remember feeling just this way in the hospital during my bone marrow transplant when the pain was at its worst. Though I was surrounded by the people I loved most in the world, my wife, my family my friends, I might as well have been on another planet. They couldn't hear my screams. They had no idea what was happening on my side of the wall.

When we appreciate this essential feature of pain - that the loneliness can hurt as much as the "burning" or "stabbing" quality, and that the longer it persists, the worse the entire pain experience becomes -- we must recognize that there is more to do than surgery or analgesics. Of course, fix the disc problem if it can be fixed, and prescribe enough pain medication, but also try to breach the wall between patient and world that contributes to the suffering.

Simply listening can help by showing that there is someone who hears you, that you are not alone. Better yet, figure out ways to make pain more communicable and sharable -- through words or pictures or whatever other kinds of language can be summoned for the task (the subject of a future posting) - so that person on the other side of the wall is not only present but actually begins to understand what you are feeling. In this sense language can be as soothing as our most powerful medicines.

References:
David Foster Wallace, "The Depressed Person," (Harpers Magazine, Jan 1998).
Robert F. Murphy, The Body Silent: The Different World of the Disabled, (Norton, 1990).
David Biro, One Hundred Days: My Unexpected Journey from Doctor to Patient, (Vintage, 2001)

http://www.psychologytoday.com/blog/listening-pain/201108/the-loneliness-pain