Living with Chronic Pain

An empty wheelchair in an abandoned institution reminds us that chronic pain can make us feel empty and lost

Making Pain Worse

Her pain was excruciating. She’d had two surgeries in as many days, and the stabbing, stinging ache she felt was worse, she said, than childbirth. She was scared, too. Not only could she barely move her legs, but she had a fever. She worried something terrible was wrong with her, but the staff dismissed her complaints. To make things worse, her doctor was already trying to wean her off the pain medication, as if she were a drug addict. She felt desperate, abandoned, and judged. Old traumas surfaced. Although she would “never” do anything to hurt herself, she prayed for God to take her. She wanted to die.

A few days later, after compassionate attention from her nurses, time for her body to recover, and some deep breathing, she started to feel better. She discovered that if she could stay calm, her pain didn’t seem so bad. She could get through this.

No matter how terrible we feel, we can always make our pain worse. When we weave catastrophes out of our experience, when we see attacks where none are intended, we can become desperate. The anxiety and stress that result will intensify our pain.

The Context of Our Pain

Because the context surrounding an event impacts our stress, it also affects how much we hurt. Assuming that the patient’s memory was accurate and her surgery pain felt worse than giving birth, that may have been because, in her case, childbirth was a time of joy. Her agony had a purpose. That gave her strength.

Her surgery, however, while necessary, was frightening. Beforehand she worried about how things would go; afterwards, she felt harassed and abused by hospital personnel. Instead of waking up to a quiet, peaceful recovery, she felt as if she were living a nightmare. Lost in her fears as she was, her distress was magnified.

But this pain would pass. It was not chronic. The patient would heal, and she would feel better than she had before the surgery. Life would pretty much get back to normal.

The Exhaustion of Chronic Pain

When we have chronic pain, or a chronic illness, that is not true. We can’t just hold our breath until we get back to our lives. Sometimes things are good as they’re going to get. There’s a new normal, and we have to get used to it, or we’ll be miserable.

Most of what I know about chronic pain I have learned from talking with and caring for others. However, I’m not a stranger to pain. Because of a car accident, then a fall that exacerbated the old injury, I have dealt with nerve pain that can make my thigh burn.

Even now, if I stress the muscles too much, I feel distracted by a stinging or an ache, but it’s nothing to the suffering I felt at the height of my infirmity. At that time, I could find no relief. At the end of my workday, I felt so tired, I couldn’t think. Managing my symptoms took intense concentration. Focusing on the stories of patients, doing a few chores, left me dull and weary, and I rarely got more than two hours of sleep at a time before the pain woke me.

That experience gave me a new appreciation for the way pain and illness limits us. Whether our pain is emotional, spiritual, or physical, it takes a lot of energy to contain it. Somehow, in the face of our affliction, we must carry on with our lives, be nice to our loved ones, laugh a little, find some pleasure. It’s hard, and we can do so much less when we are dealing with chronic pain than when we feel hearty and healthy.

An empty wheelchair in an abandoned institution reminds us that chronic pain can make us feel empty and lost

Despair and Discouragement

Yet even though I understand this in a way I didn’t before I re-injured myself, I have not experienced the despair and discouragement that can arise when our pain won’t go away or our illness is terminal. As a nurse’s aide, a massage therapist, and now a chaplain, however, I have taken care of and been present to those who know this first hand.

It isn’t easy to sit with someone whose anguish is unremitting. We like to fix things, so when pain has no solution, we can get frustrated. Medication does not always take away our suffering. Surgeries are not always effective. Sometimes we don’t get better. It’s hard to watch someone live through such misery. People whose pain doesn’t go away sometimes lose the support of those around them.

Chronic pain and illness can take other things from us, as well. We can lose physical abilities, dreams, hopes, our sense of purpose, our sense of self. On a practical level, we might have to give up our home or our car. We may forfeit our independence. Because of the way we pay for medical care in the United States, we can end up with enormous debt, which can feel like a threat to our survival. When we’re chronically ill, happiness can be hard to find.

Joy in the Face of Pain

Many of the patients I meet, however, including those with quadriplegia or constant pain, find joy in life. No matter what life brings us, we can create meaning. We can focus on what we have rather than what we lack. By striving to restrain our testiness, we can improve our relationships. We can learn better how to love. Finally, we can come to depend on a higher power, a divine essence, a sacred source of life.

Some mystics have written about the ecstasy that comes from agony. In her book, The Complete Works of St. Teresa of Avila, Vol. 1, Teresa of Avila described a vision she experienced more than once, that of an angel holding a golden spear, the tip bright with fire. While she watched, the angel pierced her heart with the spear point, the fire burning her, the point sharp enough to take her breath away.

The pain wasn’t everything, though. She also experienced an almost unbearable love of God and an excessive sweetness.

This state lasted for days, during which all she wanted was to hug her pain to her, for it gave her a “greater bliss than any that can come from the whole of creation.” She felt great “raptures” that she could not resist, and her soul transported, sending her “into ecstasy.” [1] Indeed, the “distress” she felt was “so delectable” that she thought there existed “no delight which can give greater satisfaction.” [2]

The Sufi poet Rumi wrote, “Seek pain! Seek pain, pain, pain.” [3]

Pain and Transformation

Taken out of context, Rumi’s words seem to be telling us that pain, in and of itself, is good, and perhaps it is. But if we read his poem in full, we see that Rumi recognizes that pain is a path to love.

It has been said, by Elie Wiesel and others, that the opposite of love is indifference. In the same vein, Rumi warns us not to “sigh coldly in [our] indifference.” Instead, we must “Seek pain, pain, pain!” for at least then we will be alive, we will notice the world, we will be forced to pay attention. The pain, he believes, will bring the cure. Like a hunger that causes us to taste sweetness in coarse “barley bread,” pain increases our pleasure. Because of the pain that forces us to “become low,” we can drink from waters of mercy that run through the land, getting drunk on this “wine,” on the Beloved’s presence, on the love of the Divine. [4]

That, for mystics, is the point: pain leads us to God, which leads us to love, which leads us to joy.

The Modern Patient

Yet, as Ariel Glucklich explained in her book Sacred Pain, the modern patient does not understand this. Indeed, he seeks relief from pain. The mystic Julian of Norwich believed it is our separation from God that makes us suffer. As Glucklich wrote, we who live in our modern-day, scientific world, don’t see our suffering as “distance from Truth or the Beloved; it is the rupture caused to the person by the thwarting of his or her goals.” [5] In other words, we experience pain because we experience loss. We no longer have “happiness, prosperity, health.” [6]

For the modern patient, pain makes us feel broken. We don’t understand that if we can surrender to the bliss of God’s love that lies beneath our suffering, our heart and spirit will transform into something akin to bliss.

Creating Meaning from Pain

Reynolds Price was a poet and novelist who, because of a malignant tumor in his spine, became paralyzed from the waist down. For years, he endured terrific pain which was finally relieved with hypnotherapy.

As described by Thomas G. Couser, Price wrote about his experience in his memoir, A Whole New Life. [6.] Although he never recovered the use of his legs, he discovered a spiritual renewal. Couser notes that Price’s cancer was arrested, and he did at last find relief from his agony, so perhaps his ability to find the blessings in his chronic disorder are not as miraculous as they might be. That he was able to produce more literature than before, that he felt better loved and cared for, that he became more patient and knew something more about life, are all gifts he discovered in the midst of his suffering, but they are not so different from what many other such sufferers describe. When you become sick, you learn who your friends are; you figure out what is important.

Yet Price makes it clear that what enabled him to move on, to escape despair, to embrace those blessings his broken body provided him, was his “eventual decision to abandon the death watch by the corpse of [his] old self and to search out a new inhabitable body.” [7]

Recovering from Loss

In every pain lies a loss. To recover from loss, we must grieve. To find relief from our distress, to avoid getting trapped in despair, we need to let go of what was and embrace what is. If part of our present includes disability, chronic illness, terminal disease, or pain, to welcome that present feels counterintuitive. Our modern medical establishment does all it can to undo disease, limitations, discomfort. Sometimes this striving is successful, and that is not a bad thing.

Yet oftentimes our attempt to undo the past fails. We never return to who or what we were before the accident, the tragedy, the trauma. This is true however we have been changed. Because of this, if we cling to what we have lost, insisting we will return in all our glory, fantasizing that all pains will disappear with a prayer, then whatever meaning we derive from our suffering will be centered on our losses rather than on our growth. In this way, we can keep ourselves stuck in our pain. We can intensify our unhappiness.

But it is possible to get stuck in despair not so much because we cling to the past as because we cannot imagine a future that is less terrible than our present seems. The patient who, after her two surgeries, felt trapped in the horror of her pain was, for a while, unable to find hope. Partly this was because the traumas of her past intruded on her present, leaving her lost in time. Feeling battered and assaulted, she could not look beyond the terrible moment. She could not believe that this, too, would pass.

Beyond Brokenness

Tragedies, accidents, and traumas change us forever, but that doesn’t mean we will always feel broken, lonely, desperate, or miserable. We can grieve, we can let go, we can create a joyful meaning out of any suffering.

One patient I met with felt afflicted by the traumatic memories that assailed her. Nightmares disturbed her sleep. Anxiety wracked her body. Intrusive thoughts disturbed her days. She felt scared, empty, victimized, hopeless. Her pain was as terrible as any physical pain she might have endured; perhaps worse.

She’d been told there was no “cure” for post-traumatic stress disorder. Whether or not that is factually true, it is not the case that one need endure the symptoms of PTSD in the same way for all time. This patient didn’t realize there’s a difference between curing an illness and healing it. She didn’t understand that though her symptoms might not go away completely, she could still find relief.

There are many ways to reduce the pain of trauma, including counseling, journaling, meditation, creative expression, prayer, and grounding exercises. The pain might not disappear, but it can matter less. We can learn to notice it and let it go. We can learn to live with it and even to welcome it, for just as physical pain can draw us closer to others and to the divine, so can psychological pain. As Rumi tells us, when we are in pain, we are not indifferent.

Faith in the Possibility of Growth

This young woman didn’t believe her life could change, that she would ever be free of her misery, that she could experience “post-traumatic growth,” that she could reclaim life, even thrive. She felt her life was over.

As we talked, she shared her thoughts about God, about meaning, about hope and hopelessness, about relationships. What seemed to help her most, however, was when I told her that “just because we feel stuck doesn’t mean there’s no way out.”

In that moment, she realized she didn’t have to see the way for the way to be there. She just had to trust it would become clear to her when she was ready.

With attention, prayer, and rest, the woman recovering from her two surgeries discovered a way out of her misery. Although she still hurt, she didn’t attach to her pain the same message of rejection and betrayal that, the day before, had turned her pain into intractable suffering. Instead, she realized her pain was simply the firing of nerves, a message that something was wrong. She should pay attention. That would help her focus on self-care and healing. If she heeded the message of her pain and did what she needed to do to recover, the pain would eventually go away.

What Does Chronic Pain Tell Us?

When we experience chronic pain, the message is a little different. Maybe we can’t walk. Perhaps we get lost in flashbacks or nightmares. There might be residual illness we need to attend to. But the acute harm is over. We no longer need to fight illness or seek a cure for our injury.

In such a situation, what good is our pain? How does it help us?

Maybe we can get a clue by looking at how phantom pain works. It seems that when we’re missing part of our body, our brain continues to signal that missing part to move. Not being there, however, the limb can’t respond. Still, the brain keeps trying. Eventually, the insistent firing of nerves meant to produce movement end up producing pain instead. [8]

There’s no way we can grow another arm or leg, but our persistent pain is letting us know we haven’t finished dealing with it. We need to find a way to live with the body we have. That includes minimizing our sensation of pain.

Biofeedback helps some people. Setting up a mirror to trick the brain into thinking that there are two legs moving instead of one works, at least for a while. Acupuncture alleviates pain for some, as does massaging the remaining limb or inserting electrodes in a person’s spine. Virtual reality goggles can trick the brain into thinking the missing limb has returned.

In other words, we can relieve the pain by changing the story we tell.

Telling a New Story

Changing our story can include convincing ourselves that the sensations we experience aren’t pain. They’re just sensations.

I sometimes use this technique when the stinging in my thigh gets bad, though talking to myself that way helps only for so long. If something is irritating those nerves, I can notice the feeling, allow it to be what it is, and ignore it. For a while.

Eventually, though, the sensation intensifies until I can’t pretend the feeling is meaningless. Fortunately for me, I can reduce the pain by removing the irritant or moving my leg. The discomfort has driven me to change what needs to be changed, thus giving it a purpose. Even reminding myself that the pain isn’t meaningless helps me accept it.

To work with my pain in this way, however, can be exhausting. Day after day, moment after moment, whether our pain is physical, emotional, mental, or spiritual, unyielding sensations force us to pay attention to the hurt. If our pain is acute, lasting for moments or days, it’s not so bad. When the pain continues for years, the constant management of our symptoms, our repeated attempts to create meaning and purpose, our striving to build a life from what is left after the injury or the tragedy, can leave us with little energy left for anything else.

Living with Someone in Pain

That’s when we can get testy or depressed. We might isolate ourselves or let our anger control us. Despair can set in. In our longing for relief, we can turn to numbing addictions. When we feel rejected by loved ones or when it seems no one believes us, we can make our pain worse, elaborating on our miseries, trying to convince those around us of how miserable and helpless and hopeless we feel, as if that will draw people to us, will get us the care and compassion we need. So often we push people away when what we want is to feel loved. Scorn, impatience, loneliness make our pain worse.

It can be hard to be patient with someone whose suffering seems out of proportion to the harm endured. Chronic pain in particular can seem unreasonable. When the suffering doesn’t go away, we get impatient. We do this with those who are grieving the deaths of loved ones, who are besieged by past traumas, who have chronic diseases, who cringe with a pain we can’t see. Even when someone’s pain makes sense, we don’t like sitting in that pain with them. We don’t want to watch people suffer.

What the Person in Pain Needs

But what the person in pain needs is for someone to be brave enough to remain with them in spite of tears and wails, in spite of hopelessness, in spite of frustration. If we can be there for the person in pain, honor the suffering, acknowledge the fear and the sadness, if we can let the person be exactly as she is, then an amazing thing happens. There might not be cure, but the pain will recede.

Whether our pain is chronic or not, whether it is physical or mental, whether it arises out of our imagination or because of heartbreak or from some traceable physical disorder, what we tell ourselves about the sensations dictates how much we hurt. So it helps to learn to manage our thoughts.

For those of us who don’t understand chronic pain, who live with healthy minds and bodies, whose god is an uncomplicated and forgiving one, we can learn to help those who suffer from their pain. We can be patient, we can listen, we can sit calmly in the face of their agony. No matter how absurd their story seems, we can believe that, if the facts aren’t fully accurate, the distress they are feeling is.

From Pain to Joy

Feelings and beliefs are true. We may benefit from challenging our thoughts, from questioning our stories, but if we are a friend or partner to someone in chronic pain, it’s not up to us to do that challenging for her. Rather, we need to give her the respect and understanding she needs to challenge herself.

For us to continue with our lives, to feel worthy and hopeful, we need to learn to manage our pain. All of us have pain of some kind. Some of us have horrible pain that won’t go away. Let us be sensitive to one another. If we hold each other with respect, compassion, and tenderness, we might find that our pain lessens and our faith grows. Out of brokenness, something beautiful can grow. Out of suffering can come joy.

In faith and fondness,

Barbara

Credits

  1. Peers, E. Allison, trans and ed, The Complete Works of St Teresa of Avila, vol. 1, New York: Burns & Oates, 2002, 193.
  2. 192.
  3. Chittick, William C., The Sufi Path of Love: The Spiritual Teachings of Rumi, Albany, NY: State University of New York, 1983, 208, https://archive.org/stream/CHITTICKSufiPathOfLove/CHITTICK_Sufi_Path_of_Love_djvu.txt, accessed 7/25/20..
  4. Ibid.
  5. Glicklich, Ariel, Sacred Pain: Hurting the Body for the Sake of the Soul, England: Oxford University Press, 2003, 208.
  6. Ibid.
  7. Couser, Thomas G., Recovering Bodies: Illness, Disability, and Life-Writing, 193.
  8. Glucklich 56.
  9. Price, Reynolds, A Whole New Life, Boston: G. K. Hall, 1994, 188.

Photo by Doug Maloney on Unsplash

Copyright © 2020 Barbara E. Stevens All Rights Reserved

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