Question mark held up in front of woman's face

Do I Have To Accept Living In Chronic Pain Forever?

Question mark held up in front of woman's face

What does it mean to accept living with chronic pain? And forever? How do people do that? Should they?

I struggled with these questions for years as doctors constantly told me that I needed to learn to accept living in chronic pain. I thought, How could someone have the audacity to label me as “a hopeless case” and define my future, my life? Did this mean relinquishing hope of getting better? Did it mean I needed to stop trying? I could not, would not, accept living in pain forever

As much as I had been rejecting pain, I had been also rejecting my body.  I was attached to something that no longer existed. I idolized and clung to my “perfect” body and my “perfect” life before my injuries. Before my back injuries and pain, I was fully living life, not merely existing. I did not want this “new” body. I felt unsafe in this body of pain and had lost control over it. Because of pain and physical limitations, I lost my health, my home, my job, financial stability.  But, over time, I began to realize that my body did not do this to me. It was suffering too, and trying to heal. 

I began nurturing my body as I would a beloved child or a sick family member. I began listening and responding to its needs. Through exercising, Feldenkrais work, Pilates, yoga, eating more healthfully, and gaining understanding of my activity tolerance so I did not overwork my body and cause more pain flair-ups, I began accepting and respecting my body.

Silhouette of person with head in hand surrounded by words related to depression

Chronic pain is as much a mental dis-ease as it is a physical dis-ease.

I needed to learn to accept my body and my Self.

Chronic pain creates not just physical trauma, but a disconnection from one’s Self. Grief is not just for those who have died, but for a loss of ones’s sense of Self, including one’s belief system and how one once defined his or her Self. Within my grief dwelled so many dimensions of loss–loss of abilities, companionships, independence, and how I defined my place in the world. I felt unlovable and inadequate–unworthy. Beliefs swirled in mind, such as: I had no value in society anymore. No one would ever want to date me. I could not go for long walks, or even walk on sand; no one would ever want to spend time with me. I could not be financially independent; I was worthless. All I had is my personality, but society defines people by their career and money. I had nothing to offer. How could I exist in society with pain and dis-abilities?

How could I heal from such catastrophic losses? By increasing my physical functioning, I thought. I changed my exercise goals, bought a stationary bike, and started biking for 1-minute intervals throughout the day, trying to rebuild my strength, thinking things would get better if I focused more on my body. Weeks passed and I realized that my new bike and goals were not healing grief. 

 

To move forward in my grief, I needed to let go of my false beliefs and misperceptions about myself–how I defined myself. Beliefs are stronger than thoughts, for they are thoughts embedded with feeling. We do not just think we are unworthy, we feel it to our depths. Often these beliefs start in childhood and are strengthened by other experiences, such as physical pain and trauma, because we define everything in relation to these beliefs.

Healing from grief and its psychological consequences due to trauma, is a process, a journey–a birthing–of the Self. I needed to open my heart to myself, without judgment. With compassionate awareness, I embraced the experience of my Self. I acknowledged, experienced, and de-tached from my emotional pain, the negative self-perceptions and the stories that I had created.  Underneath, deep down, I found resilience, wisdom, and self-love. Then, I began to accept the true value of my Self, limitations and all. 

From self-discovery evolved self-acceptance, and ultimately, self-love. 

When I began learning to accept and love myself, I began to accept my life. Through my inner journey, a new freedom impressed itself upon me. I had nothing–no roles, labels, or judgments to hide behind. I am what I am. And I love myself for this.

I still look for treatments that will improve my well-being and decrease pain, but I no longer allow myself to be consumed by pain. I perceive it as separate from myself. Pain is a part of my life for the moment, maybe forever, but it is not who I am.

Is it pain or loss that we need to accept?

People have told me that once they accepted pain, they felt a huge weight lift from their shoulders. They could finally refocus from trying to find a fix to living life again. If you ask me today, “Do you accept living in chronic pain”, I will probably say no, but I accept myself and my life, because I, not pain, define who I am and the course of my life.

Perhaps, instead of patients being told to learn to accept living with pain, which usually causes a defensive reaction, maybe they can be asked: “What problems are you having related to pain?” and “How can we work together to mourn your losses and reclaim your sense of Self, feeling even more self-compassion, self-reliance, and self-empowerment in your life right now?”  After all, don’t we all need this, whether we will live in pain forever or not?

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Bare feet kicking the water on the beach

My Story

Bare feet kicking the water on the beach

 “You are going to live in chronic pain the rest of your life,” the doctor told me.

In the doctor’s glasses I saw my reflection. I looked as I felt, crushed. “You’ll probably be on pain medicines the rest of your life…but at least it will help ease some of the chronic pain for you. We can also discuss you getting a spinal cord stimulator or pain pump to help ease the pain,” the doctor finished saying with an air of optimism. How could I even begin to fathom living with this horrendous pain, and for the rest of my life?

“What?!” I asked the doctor? “I had to “get by” by endless dosages of pain medicine?” My memory and concentration were already so impaired from all my medicinal cocktails. Tears swelled in my eyes as my heart began to drown in grief. Quietly and attentively I sat, but my mind raced in a tumultuous storm of devastation.

Already I had felt this indescribable, anguishing, chronic pain for too long. Previously, I had a low-back herniated disc from a work related injury as an occupational therapist. My L5 nerve was damaged after a forceful administration of an epidural was given to treat the herniation. Horror-struck, acid-like pain burned down my right lower leg and foot, which became paralyzed. My uncle, a neurologist, and another doctor intervened three weeks later and immediately a surgery was scheduled to remove the disc. The day of surgery, the neurosurgeon told me I had a 70-percent chance of never regaining any functional ability in my leg and foot. This number reverberated in my head as I prepped for my first of three back surgeries.

That surgery led to complications of a vertebral segment fracturing off, cutting through my dura, causing spinal fluid leakage, and two staph infections, one of which was osteomyelitis in my vertebra, eating it away and causing bone marrow inflammation and ceaseless, uncontrollable muscle spasms. This all went misdiagnosed for one month before I took a taxi to the emergency room and was admitted because I was in “too much pain to care for ‘myself’”. By the way, I called the ambulance and they refused to pick me up, stating I sounded “too young” to have these problems (I was 27-years-old at the time), and I “didn’t know what ‘I’ was talking about saying spinal fluid was leaking.” Thank goodness for my doctor calling the taxi for me…and paying for it! I received my second back surgery to take out the fragmented bone and repair the neural sheathe. Then I was given two months of oral antibiotics, with six weeks of intravenous antibiotics delivered through a PICC line (an IV line placed in my arm’s vein, extending to the heart, with the line’s opposite end attached to a medicine box that I carried around my waist).

Vividly, I still remember lying in my hospital bed in utter fear of moving. Even the slightest movement caused more spasms and pain to wrench through me. I was shamefully jealous of those patients I heard so easily walking outside my hospital door. Clutching my bedrail in agony, fighting my way through each convulsion, I clung to my belief that everything happens for a reason. My hope that I might discover an answer kept me going.

One day, my parents walked into my hospital room. “Your doctor is planning on sending you to a nursing home.”

women with head in her handsI was devastated, but it also ignited a survival mode that motivated me to spend every ounce of physical, emotional, and spiritual strength for the following 1-½ weeks to work with my physical therapist to learn to walk with my walker down the hall, and to climb 10 stairs with a cane. I was relentless.

Triumph! Elated with utter relief, my doctor discharged me home. Along with me came my walker, my cane, a bath chair, a hospital bed, assistive dressing devices, and the PICC line in my arm. That night, finally again in my own bedroom, I slept better than I have ever had in my life. But the next day I awoke to voices outside my bedroom door. My roommates were telling my father that I had to find a new place to live.  I was an unsightly inconvenience to them and they were “embarrassed to have friends over”.

Eleven months later, I sat in a pain specialist’s office to hear only despairing words once again. After working so hard to progress from using a walker to a cane, trying to get out of bed 1 hr a day, and teaching myself how to get over panic attacks from medical procedures and relentless pain, this stranger told me to accept the chronic pain. I would never achieve my dream of living pain-free.

My dream was my talisman. I prayed and pleaded to it every day and night. I wanted my life back, myself back. The doctors’ words stabbed my heart, but it was also what I needed to hear. Suddenly I was forced to confront my biggest fear–living in pain forever. Fears transformed into proactive anger. He had no right to define my future, my fate. I became determined to prove this doctor and all my other doctors wrong. I decided then and there that I would live a “normal” life without pain and without pain medications.

But my goal was not to prove wrong all my doctors (though it was quite a pleasant thought), but to prove wrong my own fears. To myself, I yearned to prove that I could and would heal myself. Eventually, a year later, I received a third surgery to fuse my vertebrae because my spine had collapsed onto my sacrum. Unable to live independently, I stayed at my parents’ house for six months, bedridden from pain and in a body brace.

Five years later, I turned 31-years-old, still in too much pain to work. I received therapies three to five times per week. On a monthly basis I became my own lawyer, begging worker’s compensation for the continuation of therapy. I wore a soft back brace (actually a waist girdle I bought), and any weight-bearing activity increased pain. I could sit for 1 to 1½-hour intervals, stand for 15-minute intervals, drove for 30 minute intervals, and I could walk on a level surface (without a cane!) about 1 to 1½ miles.

I am now 46-years-old, married, with a vibrant 6-year-old daughter, and able to work part-time. Pain is no longer constantly excruciating. Prolotherapy strengthened my sacrum’s tendons and ligaments so I can stand for a hour, exercise regularly, and pick up my six-year-old to hold her in my arms. I still go to  therapies and every muscle in my body always aches from tightness as if they are held in a constant grip. I take Motrin and a muscle relaxant only when I have pain flare-ups, which has changed from once-a-month to less often, with less predictability. I have been diagnosed with neuropathy, myofascial pain syndrome of neck and back, and adhesive arachnoiditis, in which my nerves from L3 down are adhered inside my spinal cord with scar tissue, but I do not define myself by it. I have a chronic, invisible illness, and you would not know the amount of pain I feel when looking at me. And this is what I prefer. For I am not my illness, I am the person you see who can be a kid at heart, has fierce determination, and who tries to live every day to the fullest.

Through the years, I redefined healing. I realized I did not need to accept chronic pain as much as I needed to accept my Self.

Inspire, courage, dream, harmony written on stones

For me, healing means healing the way in which I relate to pain and disease, and transforming these into something positive, not feared. I began to realize that I must find ease and inner peace within myself, despite what my fate holds. Healing must start on the inside before it can start on the outside. Pain is overwhelmingly powerful. It is physically debilitating, and it produces fear, which is mentally debilitating. But I have learned that pain and physical limitations do not define the essence of whom I truly am inside.

Loss and change gave me the opportunity to begin anew. I have come to realize that I can lose everything (my job, my apartment, my friends, a body I once understood), but never my Self. We each have the ability to consciously shape our experiences and our realities, and to evolve. I believe that when we undergo any type of traumatic experience, we must seize the opportunity to discover strength and wisdom within ourself that we otherwise could not or would not have known. Physical and/or emotional pain is a powerful gift–a tool–for self-discovery and self-knowledge. Pain is the paintbrush, experiences are the colors, and we are the artists. When we dispense of judgments of ourselves for what we can and cannot do, we learn to trust, to believe in, and to appreciate ourselves more fully. This is the foundation for creating the fine art of our life.

I still cry because of the intensity of pain and the accompanying emotional struggles. And yes, I miss running, skiing, and being as physically active as before. Of course I still struggle some days to find inner peace and happiness. Life is a university, and I am only a freshman. But, I no longer regret my journey. I am proud of my resilience and of the life I have created and continue to create despite chronic pain, and I probably feel more grateful for my body, my abilities, and my life than I would have if I had not been injured.

I know and love what is most important in my life: my family, my friends, and myself. I lost many friends when I first became “disabled.” I am greatly thankful to all my family and those friends who love me for who I am. We are each so special as individuals despite physical, mental, and/or emotional limitations. We all have gifts; why deprive ourselves and others of these?

Let us find compassion in and for ourselves so that we may fully embrace our life and feel a passion for all that is around us.

A kite is held down at one end, yet it still soars in the wind.

I wish you happiness, love, and laughter, and so many blessings,

Deborah A Rogers

Child flying a kite at sunset

 

 

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