Sickle Cell Disease-Related Pain: A Physical and Emotional Battle Incomparable to Others 

Sickle Cell Disease: Fighting Unrelenting and Excruciating Pain

Have you ever experienced excruciating pain so intense it feels as if shards of glass are pumping through your veins alongside your blood? Or felt like your bones were cracking just as if you had fallen from a building, crashing onto solid ground? What about the burning sensation of a gunshot? Have you felt that? 

If you’ve suffered from sickle cell disease, you probably have—perhaps worse. The pain is unrelenting and excruciating during a sickle cell crisis. It is agonizing, but not without its life lessons. 

Seeing and Relating to the Faces of Pain

Through clinical and emergency room visits, sickle cell patients see the faces of pain—in themselves and in others who share these experiences and cannot hide the agony from the canvas of their features. Their pain exudes from their bodies, as they try to show others what they’ve been through—what they’ve withstood. 

Of course, when we aren’t in pain ourselves, we attempt—in vain—to empathize by putting ourselves in their shoes. We do this even when we are in pain ourselves. Attempting to relate to human faces, images, events, and emotions is a natural reflex. 

Our own emotions are linked to memories, sometimes of our own painful experiences. We want to understand the experiences of others, so we try to translate them into things that give us a sense of their meaning.

Translating Pain to Words and Numbers

Diagram showing pain scale level with different colors illustration

We can ask others to “explain” their pain so we may better understand it, but this is often fruitless and ineffective. In clinical visits, sickle cell patients are told to rate their pain on a scale of one to ten. Truly, though, pain cannot be measured in this way. It doesn’t translate to numbers and figures and doesn’t compare equally from person to person. 

We can try to express pain with words, but even the most extensive vocabulary will fail to explain its intensity at times. Words alone fail to paint a vivid enough picture of all-encompassing feelings of agony. When pain keeps growing in multiple ways and directions, physically and mentally, words simply cannot do it justice. This begs the question; is pain multidimensional? 

Different Pain Experiences Make Comparisons Impossible

We have various descriptors that can be used to explain and elucidate our feelings of pain and suffering, but do you think these are valid? Do they truly offer others a glimpse into our individual experiences of pain? Given the fact that many have not even experienced actual extreme pain themselves, they cannot possibly comprehend the full meaning of ours. 

The “8” on someone else’s pain scale could be the “3” of a sickle cell patient’s pain experience. Another may describe a very sore throat as “agony,” while a sickle cell patient has learned better through their suffering. This is not agony. 

Do not misunderstand me. No one’s experience of pain is being shrugged off or pushed aside, here. It is merely that people who have not felt as high a level of pain as those who have been combating sickle cells for years, have yet to meet the enemy inside themselves—or the suffering that accompanies this internal battle. 

Sickle Cell Warriors Can Tell You About True Pain

Memories play the most vital role in how each of us processes physically and emotionally painful situations. To cope with current situations, we can dig deep into our memories to focus on cherished past experiences that taught us to cope. Alternatively, we can bury painful experiences deep within our subconscious out of avoidance. 

Regardless of how we process our pain, these events resonate throughout our lives. There are situations so painful and distressing that they become unavoidable memories and, in fact, feel more realistic every time you recall the experience. 

Broken bones, childbirth, suffering a bad burn, or another injury can be some of the most excruciating events of someone’s life, but these memories still tend to fade with time… but, if you’re looking for worse, you need only ask a sickle cell warrior. They will remember their last pain vividly, and fearfully. They know how bad the pain can be, but they also know it can always get worse.

What is Sickle Cell Disease Pain Like?

Upon their early discovery, the oddly shaped sickle cells were assumed to be parasites. These inferred parasites were given the name “sickle cells” formally in 1917 when Dr. Victor E. Emmel confirmed that, “the cells were neither parasites nor other physiology artifacts.” With this information known, he suggested the name of the oddly shaped hemoglobin-based upon their shape. 

While these cells might not be parasitic themselves, the pain that sickle cells cause is somewhat parasitic, giving a sensation of a swarm of parasites surging through the body—attacking from inside. At times, a one-to-ten scale is simply not enough. The pain far exceeds the parameters of the scale, yet I still rate it around eight. The situation is well described by Jasmine Bailey, may she rest in peace, in her poem “Sickle Cell,” which states:

“Numbers have no bearing when your pain is more infinite than eternity.”  

 Each Crisis, and Each Part of Every Crisis, Brings Stronger Pain

During a sickle cell crisis, each level of pain breeds a new devil, a stronger demon. Rating the pain as a ten on the scale provided seems worthless. It feels like you’re merely saying, “The scale has already erupted. ”Whereas, looking back to when the pain was just a level one game; each level was easy to fight until level six… Now, you’re surrounded and outnumbered.

The discomfort feels like a parasite invading your body, sending vigorous waves of pain that prick and claw at your insides. It takes the form of a sea whose waves are merging, joining to become a heavier force—soon becoming unbearable. You cannot possibly stand up to that kind of pain. You can merely sit back and watch it grow as the pain takes on a life of its own. Seeing the pain engulf your entity and witnessing it devouring you slowly is just the start of a sickle cell crisis. 

Additional Hurdles to Physical Activity

Soon, you learn the additional hurdles that sickle cell confronts your physical activities with, including reducing your ability to walk, hindering lung function, and invading alveoli and bronchi holes to block breathing. If it’s in your arms, it affects the ability to move those body parts even an inch to reach out for comfort.

Pain has a dark sense of humor. Sometimes, you can feel each sickle cell in your body laughing at your struggle as it takes more away from your daily life. 

In an article titled, “Pain: History, Culture and Philosophy,” by Murad Ahmad Khan, Fauzia Raza, Iqbal Akhtar Khan, published in the Acta Medico-Historica Adriatica Philosophy  stated, “Pain is one universal existence. Despite its long and venerable history, the true nature has not been precisely conceptualized.” 

SCD-related pain is often misunderstood; its unpredictable, its rebellious, You never know what may happen, when and how long it will stay.

The Characteristics of Pain

The pain, despite its many drawbacks, has a bright side to it. We all grow through pain, whether it’s physical, emotional, mental, or even spiritual. The sickle cell crisis is not just a physical condition, but an emotional phase too. It is a stage that everyone, at some stage of life, has experienced. We face similar trials and tribulations in the face of poverty, illness, relationship issues, and other life challenges. 

Pain has a unique way of faltering your life, taking you away from your plans, and causing you to stumble into the darkness. On the other hand, pain can be somewhat prideful. It is stubborn, boastful, and selfish; just like the lyrics in Prodigy’s song, which state, “You can never feel my pain.” Your pain is yours alone, and there is something slightly comforting in that. No one can claim to know your pain.

Growing Emotionally Through Long-term Pain

Each of us grows through our pain, becoming veterans at handling the emotional trauma that pain causes, which has far more deprecating effects as compared to the physical infliction itself. Pain can affect mental health, leaving sufferers spiritually defeated… but we can learn to work around this. 

How, though, can we master our pain and acknowledge the subjective experience? Every crisis, someone always says to the sickle cell patient, “Just breathe through it.” It is as if breathing is now the easiest thing to do… meanwhile, the pain is sinking its fangs into each labored breath. In some cases, the pain has its own pulse, and each breath only escalates the pain until truly, nothing exists but the pain. 

This can be summed up by Arne Johan Vetlesen thoughts in the book The Philosophy of Pain, in which he states: 

“All that is real is the body, the body consists of pain, the body is pain and pain is the body. Everything else is non-existent, non-important lightness itself. The pain is intensified until it mimics death, where all sensations point towards death as the real and away from life.”

Pain has a way of stopping your life, leaving you feeling you’ve lost a war, and that everything is over for you. The pain pulls us out of reality, placing us into a dimension of aggravation and indignation, trapping us where we stand.

Pain Doesn’t Have to Stop Life

When faced with such an excruciating level of pain, it feels like life must stop, everything is over, and the war is lost. We’re pulled out of reality and lose our focus. Then, we fall into a pattern of overthinking. Life becomes nothing more than a series of thoughts like:

“How am I going to pay my bills?” 

“My cousin’s party is next week. I can’t be in a crisis now.” 

“I have a paper due, now is not the time to go into crisis.”

Overcoming pain is one of the biggest life lessons. Pain is a mystery; you never know how long it will stay and how long it will last. Rest assured, you will be a stronger person for it in many ways, despite the level of discomfort associated with it.

How have you grown from your worst pain? Would you give that personal growth up to not have felt that pain? Tell me your thoughts in the comments.    

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