What Do You Mean You Have Chronic Neuropathic Pain?

Today's post from lifeinslowmotionblog.com (see link below) looks at a dilemma which faces us all when confronted by disbelieving or ignorant faces that don't have a clue what we're on about when we go on about neuropathic symptoms. It's human nature - people match what they hear our pain involves, with what they have experienced in their own lives. Only we know how different neuropathic pain is and how much it can influence our daily lives for the worse. The article talks about a 'communication dilemma' and indeed that's exactly what it is. Just explaining that 'chronic' pain is not a measure of how severe the pain is but a description of something that just never goes away, (chronic meaning, long-lasting) is difficult enough. This article attempts to put the problem into context and help us feel better about the situation when it comes to dealing with other people's opinions.

Explain Your Pain: The Communication Dilemma
Posted on July 30, 2015 by lifeinslowmotion

Hi Folks, I’m starting a new series called “Explain Your Pain” which will attempt to address the difficulty of explaining our chronic pain to our family, friends, and others who need to be in the know. In this first post “The Communication Dilemma” I lay out the problem, and in future posts I will give some thoughts on how to move productively move forward to explain our pain.

Something about chronic pain is mind-numbingly difficult to describe. Something about describing our chronic pain experience leaves us feeling ashamed, alone, and misunderstood. If you struggle to explain your chronic pain to family, friends, and loved ones, you are not alone.

We all have memories of those tongue-tied moments, those seconds that stretched into minutes, as we sifted through our brains to try and find the right words. The words never seem to come.

We all have those relationships that are just not the same, because we have never been able to find the right words to explain why we have suddenly become so unreliable, always cancelling plans.

We all have those tear-stained memories of feeling so misunderstood and so judged that we are unsure if we will ever talk to that one friend again.

We can all remember conversations that were intended to bring clarity and understanding but somehow ended up only adding to the overall confusion.

If you have chronic pain, you are familiar with this communication dilemma. You are familiar with the gap that exists between our intimate experience of chronic pain and how much our family and friends know about our daily experience. You are familiar with the gap, but so far have been unable to bridge it. So far, words have fallen short.

What about chronic pain is so impossible to describe and so difficult to comprehend? Why do conversations about chronic pain feel unnatural? Why is this communication dilemma a common and overarching theme in the lives of so many who struggle with chronic pain? Perhaps if we can begin to answer these questions, we can figure out how to move forward in this quest to explain, in this journey to be known.

Describing chronic pain is difficult because it requires that we put objective and concrete words to a subjective and abstract experience.

At first glance, chronic pain appears to be a tangible and physical experience, but this is not the full story. Our chronic pain is certainly physical, and it feels concrete to the one who experiences it, but in a somewhat paradoxical sense, it is also incredibly subjective and abstract.

Why? These paradoxical qualities exist simultaneously because of the discrepancy between what we experience and what the people around us see.

Chronic pain is tangible to the person who feels it, but abstract to the person who cannot see it. We are the only one who can feel our own pain, and depending on the type and severity of our pain, those on the outside are often unable to see any tangible evidence of what we are experiencing. Because no one can see our pain, the question of whether the pain is real or as bad as we say lingers between our relationships and underlies all of our conversations. And so people wonder, in silence or out loud, “If it cannot be seen, is it actually there?”

Our pain cannot be seen and it cannot be objectively measured beyond a wildly inaccurate 1-10 scale that means something different for each person who uses it. Because it is a subjective experience that cannot be objectively measured, the word of the chronic pain fighter must be taken as true despite no apparent evidence to confirm.

Because there is often no evidence of what we experience, our pain behaviors and responses to our pain are used to confirm our lack of sanity instead of the presence of our pain. Our grimaces, limps, and our groans, as well as our decisions to spend all day lying on the couch or cancelling work in response to something that is invisible are used to prove that we are exaggerating, crazy, or seeking attention, instead of serving as evidence for our pain.

Describing chronic pain is difficult because society has little understanding of the difference between acute and chronic instances of pain.

The terms “acute” and “chronic” as used to describe pain are not a part of our societal vocabulary. And because these important descriptive words have not become ingrained in our vocabulary, people tend to think that pain is simply pain.

When people believe that all pain is the same, this poses a huge problem, because most peoples’ experiences of pain are of the acute variety. When people hear the word “pain,” they then draw on their own experience of acute pain to understand our experience of chronic pain. They make the grave mistake of assuming that chronic pain and acute pain are more alike than they are unalike.

But all pain is not created equal. All pain is not the same. Chronic pain is vastly different than the more common experience of acute pain.

Chronic pain is a continuous and unrelenting experience, vastly different from acute experiences of pain. While acute pain has purpose, alerting us to bodily damage, chronic pain is often purposeless, our body’s pain system run amok. It is poorly understand that pain over time becomes magnified a hundred fold because of how it must be dealt with continuously and with no hope of a break. The hope that exists when pain is acute, that hope that the pain will one day go away gives strength to persist and keep going. However, this same type of hope for physical relief is not present when pain becomes chronic and may not ever go away.

Describing chronic pain is difficult because our pain is unpredictable and transforms over the course of an ever-changing story.

Our chronic pain is shifting and ever-changing. We feel one way on Monday and a different way on Tuesday. The intensity, quality, and presentation of our pain vary throughout the days, weeks, months, and changing seasons. New symptoms come and go. Old symptoms worsen and intensify. We have flares, relapses, setbacks, and periods of relative calm.

Because our pain is always changing, keeping people updated on our condition requires a continuous conversation. We cannot explain our pain one time and expect people to understand. With each new season, we have to supply updates and new information.

Our chronic pain is paradoxical and contradictory. It is a complex and multifaceted experience that is many times confusing even to those who experience it. If we don’t fully understand our own chronic pain, how can we explain it to others? We don’t know what triggers our pain or where that last flare came from. We don’t know how to explain why we felt good on Monday and bad on Tuesday, because we are unsure of the reasons ourselves. Oftentimes we are unsure if or how our various symptoms connect, and oftentimes we do not have a clear diagnosis. When we are dealing with conditions that we have a hard time explaining ourselves, we will struggle even more to convey what we do know to the people around us.

Describing chronic pain is difficult because long-term and unrelenting suffering makes people uncomfortable and sometimes people do not want to know.

Sometimes people do not want to understand our pain. Listening does not come naturally to people, and this is especially the case when the topic is one that makes people uncomfortable. Unrelenting suffering that may never go away makes people uncomfortable because they are unable to fix our problem or give us effective advice. Unrelenting suffering makes people uncomfortable because it inconveniences them and because when we suffer, oftentimes the corner edges of our suffering will affect them as well.

Sometimes describing our chronic pain is difficult because people do not want to listen long enough to fully understand. Sometimes people do not want to listen long enough to understand because our suffering makes people feel uncomfortable and they are unsure how to respond.

Describing chronic pain is difficult because we are too exhausted to keep explaining.

Because our pain is complex, confusing, and contradictory, it takes great energy to explain and keep people up to date. At times we feel able to explain our pain, but we choose not to because we want to save our precious energy for more important things. The physical effects of our chronic pain wear us down and exhaust us. We must carefully decide how we will use our small pool of energy, and sometimes explaining our pain doesn’t seem like a worthy enough endeavor.

For all of these reasons, we eventually reach a state in which we are no longer willing or able to attempt these difficult conversations. And over the years, we tend to move towards one of two tactics.

Instead of seeking to explain our pain, we start to complain about our pain.

We become so hardened and bitter towards those who never seem to want to understand that we move into angry and bitter complaining. Our attempts at productive conversations seem pointless, so instead we move towards ceaseless complaints of how horrible our pain is. Often this turns into a downward spiral as we push people further away, and confirm everyone’s beliefs that perhaps we really are crazy, exaggerating, and attention-seekers.

Instead of seeking to explain our pain, we burrow inward, shutting everyone out, living in silence.

Many of go into hiding. Explaining our pain has become such an exhausting and futile effort that we begin to live out our chronic pain in secret, hiding how much pain we are actually experiencing. Over and over again, we plaster a smile on our faces, pretending that everything is ok, when it is far from ok. We stop explaining because we are exhausted and need every drop of our strength to fight this pain that haunts us.

There is a third option. It is possible to move out of our silence without moving into unhelpful complaining. It is possible to successfully explain our pain. Most of our past conversations were unsuccessful because of the simple fact that we were not prepared, and I believe it is possible to prepared. Once we begin to understand the nature of our chronic pain ourselves, we will better know what topics are important to convey to other people. It is possible to speak the truth about our pain with confidence. It is possible to speak about our pain in a way that will enable others to truly understand.

Once we are prepared, explaining our pain will no longer be a hopeless endeavor.

Stay tuned!

http://www.lifeinslowmotionblog.com/explain-your-pain-the-communication-dilemma/