Grief's A Revolving Door When You Live With Chronic Pain

This post was originally posted on Blogger July 13, 2024.

Chronic pain has brought numerous challenges beyond the obvious physical aspect. Without a pain-free day since March 2008, the toll is immense. In fact, Honestly, it’s been so long I've forgotten what it feels like to be without pain.

For pain warriors like myself, grief is a constant, insidious companion that is as chronic as my physical pain. It's a relentless cycle of loss, like a revolving door that never really stops to let anyone off. I've been through this emotional wringer countless times, and each loss erodes a little piece of me. The sudden realization of lost abilities is particularly devastating, often triggering depression. Each subsequent loss compounds the emotional burden, fueling anxiety about the future. I worry about the impact on others and I put pressure on myself to adapt quickly so that I impact others as minimally as possible.

These ongoing physical and mental losses disrupt my daily life. Some losses are more pronounced than others, but all contribute to my overall well-being. Having recognized the pattern of grief cycles, I've experienced multiple iterations, and fell into a pattern of perpetually grieving those losses, with each a painful reminder of who I once was. I feel a heavy sadness for the person I might have been without these accidents and the life that could have been.

Chronic pain-related grief doesn't follow a structured or predictable pattern. It's both agonizing and familiar, creating a strange rhythm of loss and recovery. While each person's experience is unique, the repetitive nature of grieving can lead to a form of desensitization. Years of enduring this cycle have made it my new normal, and I struggle to find lasting acceptance.

The accidents themselves were deeply traumatic. My body endured frequent, often weekly, excruciating medical tests and treatments, compounding the physical and emotional toll. These very painful tests and procedures went on for 6 years and caused me severe medical and physical trauma and PTSD. On top of the medical trauma I experienced in those first 6 years, I endured the trauma of living with constant pain and it’s sharp fluctuations up when I move my body or something touches my legs.  That trauma has not gone away, and only amplified, making the unknown nature of my condition overwhelming.

The rapid progression of CRPS from my ankle to my legs initiated the first of many grief cycles. I've grappled with this over the years and am actively seeking acceptance. By working through these cycles, I hope to lessen their impact and move forward with my life. Embracing myself as I am, despite the devastation of chronic pain and illness, has been a challenge. However, with taking more small steps forward than steps backwards, I’m starting to see progress. This newfound momentum inspires me to persist, even when results are slow. Overcoming deep-seated grief and PTSD is a major goal, and I'm committed to this process.

The grief cycle I describe is all too familiar for those of us living with chronic pain. It's so common among people with chronic illnesses that the well-known "5 Stages of Grief" by Elizabeth Kübler-Ross has been adapted specifically for our experiences. Jennifer Martin, PsyD, outlined these as the 7 Stages of Chronic Pain and Illness in 2015. This framework has been incredibly validating for me and countless others, confirming that our feelings were real not a sign of madness. These stages are: denial, pleading and desperation, anger, anxiety and depression, loss of self and confusion, and finally, acceptance.

It’s terrifying to lose abilities, and it’s easy to catastrophize and imagine the worst when these losses occur. Watching myself transform from a fully capable, productive person to someone limited and constantly in pain was devastating. Before my accident, I was deeply involved in sports—goalie for hockey and field hockey, catcher and shortstop for softball. I excelled at my job as a 911 operator and was training to become an RCMP dispatcher. I was also very active with my husband and kids. When the kids were toddlers, they all used to come to my games and watch me play. In fact, just two weeks before my accident, I bought a new set of goalie skates for an upcoming tournament I was excited about. I’d used the same skates since starting as a goalie in the 1990s, and I was thrilled to use the new ones. Unfortunately, I only got to wear them once.

In my experience, the grieving process is complex and cyclical. As one phase of grief begins to conclude, others may emerge, overlapping and intertwining in unexpected ways. They find a rhythm and this can create a whirlwind of emotions, making it difficult to see beyond the present moment. As this emotional weight accumulates, the future can loom large, filled with uncertainty, fear, and despair.

I've personally felt this burden as my chronic pain has evolved, presenting new challenges. Each change brings with it a wave of anxiety about the future and its potential impact on my loved ones. Watching one’s physical health decline is undeniably distressing. For me, the emotional trauma surfacing with these experiences has had a profound effect on my mental well-being, creating a vicious cycle of pain and distress. Without adequate support, it's easy to become overwhelmed and lost. Even with strong support systems, navigating these challenges can be incredibly difficult. Limited resources for emotional and physical care can exacerbate feelings of isolation, loneliness, and despair, creating even more obstacles to overcome. I’m thankful everyday for the support I have, I know not everyone is as lucky as me.

For individuals grappling with chronic pain or illness, losses are often multiple, ongoing, and permanent, making them exceptionally difficult to process and resolve. Unlike acute illnesses with a defined endpoint, chronic conditions present an unending series of losses. This is often termed "infinite loss," as it can profoundly and permanently impact one's quality of life forever.

The emotional toll of such loss is immense. These types of losses and grief can be elusive as daily reminders of past and present losses create a relentless cycle of grief. While acute illness is undoubtedly difficult, it offers the hope of recovery and a return to normalcy. In contrast, chronic illness, especially chronic pain, provides no such respite.

Neurological disorders characterized by periods of relapse, remission, or progressive symptoms can create a lifetime of uncertainty. This chronic state of anticipating what may or may not happen next is often referred to as the "limbo state." For many people, prolonged exposure to this limbo following a loss can be paralyzing and incredibly difficult to overcome.

It's important to remember that the seven stages of grief aren't a linear process. Everyone experiences grief uniquely, moving through the stages in their own order and at their own pace. For me, finding a path that allows for gradual progress has been helpful. This now means I am taking the time to fully process each stage before moving on to the next, with the ultimate goal of acceptance. 

Unfortunately, the familiar cycle of worsening physical symptoms and decreased function often triggers another round of grief. This pattern is especially challenging for those living with chronic pain, as it frequently accompanies new or intensified pain. It's a relentless process.

I didn’t fully grasp the impact of my chronic pain until it spread to both of my legs, and then again after the bus hit me. Early on, I learned to adapt as best I could to these losses. However, I’ve struggled to move forward because I’ve never been given the chance to properly grieve. Each loss and grief cycle has been interrupted by another loss and grief cycle beginning, and my grief process is constantly starting the grief cycle anew. It’s been difficult to find closure amid these ongoing and overlapping losses.

Knowing that your life has been significantly altered and could change further due to illness is incredibly stressful. The uncertainty of the future, especially when considering the next 10 or 20 years, can be overwhelming and frightening. It's natural for your mind to drift towards worst-case scenarios when faced with so many uncontrollable factors. Most chronic illnesses fluctuate in severity over time, and the potential for further losses on top of what you've already experienced is undoubtedly upsetting. I was 28 when my first accident occurred, and now at 45, I find myself wondering what the future holds and how my recent personal progress will impact that. I'm learning to avoid dwelling on those anxious thoughts.

Each stage of grief associated with chronic illness has distinct characteristics and can offer insights into one's current emotional state. Self-compassion and external support are essential for navigating these stages and increasing the likelihood of reaching a degree of acceptance. Unlike typical grief, the losses experienced by individuals with chronic pain or illness are often multiple, ongoing, and permanent, making it difficult to find a resolution.

The 7 stages of grief are as follows:

1. Denial. Usually accompanies a recent diagnosis and feeling of being in shock of that diagnosis. You wonder about the quality of your life and any adaptations you may need to make.

2. Pleading, Bargaining, and Desperation. In this stage, you are pleading and trying to bargain away your recent diagnosis. In this stage the sufferer also wishes really hard that they could go back to their life, before their chronic illness. There are also feelings of guilt and self blaming for getting sick or injured and wonder if they could have done more to prevent their illness. this feeling of guilt usually comes with bargaining as the person blames themselves for their situation.

3. The next stage is Anger. Everything I’ve read says that this is a crucial stage in which persons suffering chronic illness or chronic pain begin their healing process. It’s the stage we try and work through, and often don’t realize how angry we are until we start to address what chronic illness has stolen from us.

4. Anxiety and depression are next. Both of these settle in as your life changes and your chronic pain or illness solidifies. Feelings of uselessness, guilt and shame, and an intense sadness can cause a person to withdraw, and lose hope. I am super lucky in that I have quite a large support system right at home that I can access any time.

5. Loss of Self and Confusion. This is very real to people with chronic illness and chronic pain as we often define and understand ourselves by what we can do. I know I get caught in this thinking trap. Having a chronic illness, in my case, chronic pain, means that for many we can no longer do what we used to do and in the same way, and we have to figure out how to redefine ourselves, and become our “2.0” version. I call my comeback and new persona, Meredith 2.0. This stage can happen on its own or along with depression and anxiety.

6. Re-evaluation of Life, Roles, and Goals. This is where you try and figure out how to move forward in positive and healthy ways. For me that was finding apps for my phone to help me with my day to day things I struggle with, books to educate myself, and reaching out for help. Chronic pain has forced me to re-evaluate how I fit into the bigger picture of my fresh start. I question what it means to my day to day life in figuring out how to go about daily activities and tasks, with the adaptations and changes I needed to make. I worry what all of this looks like for me year after year.

7.  Finally we get to Acceptance. This is the final stage in the 7 stages of grief for chronic pain or chronic illness. This is something I am working hard towards achieving. I want to finally feel like myself, my new self, and in time I will get there. I am doing lots of things to work towards the self I want to be.

I’ve experienced all the typical stages of grief, each with varying intensity. Some emotions ebb as others rise, creating a complex rhythm. Acceptance, however, remains elusive. When grief is compounded, it can seem insurmountable, and finding acceptance this year has been a primary goal.

Chronic pain and long-term illness have drastically altered my life, including my relationships and sense of self. I am different, or feel different, like my brain feels different. It processes differently than it did before, and as such I've undergone a profound identity crisis. Once a proud and successful professional, I abruptly became unemployable. This happened as we were just beginning to build our family and future together. In an instant, our dreams and aspirations were shattered. This loss is a profound grief for both me and my family. 

I recently learned that individuals with unresolved grief often experience more severe and treatment-resistant depression and anxiety. This certainly resonates with my own experience. I’ve had to adapt to significant changes in my cognitive abilities. My mind tires easily, especially when tasks require complex thought or multiple steps, and I get confused easily and need things explained. Noise is a major challenge. Competing sounds send my brain into overdrive, making it difficult to concentrate and communicate. This often leads me to avoid social gatherings, particularly those with loud music or background noise. The fear of a public meltdown is overwhelming. I know these feelings might seem irrational, but they’re a very real part of my experience.

Living with chronic pain and the loss of a healthy, physically able body means certain things are now a permanent part of my life. I need to find a way to accept this reality. I can either resist these losses and focus on what's no longer possible, or I can learn to adapt and work with them. I choose the latter. My goal is to process each loss with acceptance in mind, ultimately integrating this acceptance into my life. To achieve this, it's essential to acknowledge the pain and understand the consequences of unacknowledged grief.

For many years, I struggled to fully comprehend the extent of my grief. My memory of the first five to six years is hazy, so I can't say for certain if I recognized it as grief right away. Perhaps that's why processing it has taken so long. I experienced sadness, depression, and guilt, but didn't connect these emotions to grief. It's common for chronically ill individuals to overlook the fact that anger, denial, depression, or guilt might be signs of grief.

I've learned the hard way that listening to my body's cues and setting more realistic goals are essential for maintaining my well-being. This recent shift has already made a positive impact on my life. 

Living with chronic pain is a complex and multifaceted journey marked by physical, emotional, and psychological challenges. The grief associated with these ongoing losses is a silent yet powerful companion, often overlooked or misunderstood. By sharing my experiences, I hope to shed light on the complexities of chronic pain and the profound impact it has on one's life.

While the path to acceptance is long and arduous, it is essential for finding peace and resilience. Recognizing and validating the grief associated with chronic pain is the first step towards healing. By understanding the seven stages of grief and allowing oneself to experience each stage fully, individuals can begin to rebuild their lives.

It is crucial to remember that everyone's experience with chronic pain is unique. There is no one-size-fits-all approach to coping. Seeking support, whether from loved ones, support groups, or healthcare professionals, is invaluable in navigating this challenging journey. By sharing our stories and connecting with others who understand, we can find strength, hope,and a sense of community.

Ultimately, finding a balance between accepting the limitations imposed by chronic pain and striving for a fulfilling life is key. It is a delicate process that requires patience, perseverance, and self-compassion. By focusing on progress, rather than perfection, individuals can empower themselves to live their best lives, despite the challenges they face.

Remember, you are not alone.