Tears of acceptance – months of unknown

The turmoil of the unknown, living with pain, months/years of suffering, it’s a huge journey, something that I have never personally experienced for such a duration. Yet it is a common experience in everyday lives and is presented in many a clinical practice. Pain is the experience commonly presenting itself as a physical manifestation or disability to a persistent pain sufferer. It is fascinating how much pain can affect the human spirit, changing character, behavior and perceptions.  This post reflects a clinical experience……

It has always interested me what makes us endure pain and suffering. Is there really a finger we can place on it? Pain continues to baffle me because of the depth you can go to understand the multi-dimensional nature. I decided to write this piece after meeting a patient that had endured their pain for several months. Now this may not seem like a long time to some. There are those that have endured their pain for a lot longer, years. However, everybody’s circumstances are completely individual. This particular experience inspired me to write this post because of their journey.

Pain is multi-dimensional it is all-encompassing it is not just physical, even I sometimes struggle to make sense of this? It draws upon a multitude of components. Qualitatively it can be very difficult for an individual to separate an experience that has an unrelenting physical presence compared to an emotional presence. For example, despondency or depression that is often expressed through physical attributes. Are the two so very different? Indistinguishable to the individual that believes it is irreversible. As David Biro (2010) explains in his book ‘most simply defined, pain is an all-consuming internal experience that threatens to destroy everything except itself – family, friends, language, the world, one’s thoughts, and ultimately even one’s self.’ A powerful but very real statement to sufferer’s of persistent pain. Physically there is no relevance to that statement but it can be interpreted in such a way.

It’s a powerful statement, disturbing even, it describes the suffering and adversity of an individual in persistent pain, and yet the conception of that statement can so easily be disregarded and is often interpreted as a physical anomaly by a clinician for a number of reasons 1) the subjective explanation 2) education, 3) past experiences, 4) stigma 5) lack of understanding about the rhetoric of pain. As soon as a clinician and patient engage in conversation about pain in clinical practice, pain is presented and conceived as a physical anomaly. Are we doing something wrong from the outset? It is not just the physical destruction it affects a persons schema, their sense of self, their personality, their interaction with the world around them. Words, to name a few include isolation, ostracization, exclusion and disconnection.

The following is a narrative of a clinical experience….

The individual bursts into tears, I turn and crouch adopting a demeanor of empathy and ask, “are you ok?” The individual, lying on their back is safe, in a non-threatening position in a safe environment where a need for anxiety and fear is unnecessary. Incoherent, unable to verbalise their feelings the individual nods. Tears continue to stream down their face, the individual convulses as if forcing a great weight off their body and then, calm, slow breathing. I rest a comforting hand on the forearm of the patient and they utter several words, “I just want this pain to leave my body”

A real experience for the individual, a moment of catharsis finishing with a daunting question. A difficult task to explain that pain is a conscious experience and that throughout their journey there have been many experiences and circumstances that have compounded their symptoms, language that has confused and reinforced their beliefs that something is still so terribly wrong.

The individual, expressing frustration, continues  “I am not who I used to be, I endure this pain all because of one thing no one has explained to me what is going on, what is actually damaged or healed or how long it will take before I get better.  I am continually told it takes time, it takes time, time appears infinite when it comes to dealing with what I am going through.” 

Is this a choice? Does someone choose to endure pain? Is this is a result of confusion? So what had happened……….The individual had fallen on their shoulder 18 months ago whilst on her way to see her GP for an unrelated issue. This started a cascade of events that included physiotherapy, scans, injections, physiotherapy, surgery, pain consultants, proposals of further surgery and more physiotherapy. One question had still not been answered, “can someone please tell me what is going on, has it healed and when will the pain go away?”

Understanding this situation and explaining those answers to any individual is not easy. The first two parts of the question (explaining structure and function and tissue healing) may seem simple enough it is the final part of the question that goes beyond the skill set of many a clinician. It takes years of skill, knowledge and understanding to disseminate this information in a single session in the hope that it will make sense to the individual. To the untrained clinician recognizing our limitations is much more important as opposed to continually providing treatment with the best intentions.

Explaining pain requires a consolidated knowledge of science, art, philosophy, language and pain expression. Are we really skilled enough to be able to explain this? How do we explain this? Interestingly clinicians use rhetoric to explain pain every day. Metaphor is how we explain pain. Biro (2010) explains ‘Metaphor exchanges absence for presence, darkness for light, and silence for language.’ Metaphor helps us to make sense of our experiences it allows the individual to objectify their symptoms. What clinicians need to get better at is being able to explain the rhetoric of pain and pathology using metaphors that encourages reassurance and decreases fear and anxiety.

Individuals endure pain because of what they feel, experience, believe, hear, read, see, the list goes on. There is a biology to it but not in a way that can be treated through a single approach. Language, education, knowledge, understanding can create a sense of empowerment and independence, with an ability to make pain a background annoyance. Think of the analogy of the devil and the angel sitting on your shoulders. Once you can control the devil you are able to get on with life. Language, knowledge, etc can also do the opposite (reference, reference). Research provides clinicians with opportune approaches that are novel to treating disease, illness and pathology. Yet this can mean so little if language is misunderstood, metaphorically misunderstood.

Thanks for reading

TNP