Chronic pain is not limited to physical suffering: it is also a source of invisible losses, affecting much more than just the body. It alters daily life, relationships and, often, the very identity of those who suffer from it. Every day, people faced with persistent pain, whether due to illness, accident or any other condition, struggle not only with the pain but also with a sense of mourning: for the life they used to have, the energy they used to have, the projects they can no longer pursue.
In this article, we explore the complex grieving process that many people experience in silence. We will shed light on the impact of chronic pain, both physically and emotionally, and how this suffering can be transformed into a genuine path of resilience. Using scientific data and testimonials from people who have been through this ordeal, we will seek to better understand this phenomenon, while providing you with practical, research-based solutions for learning to live with pain while honouring these losses.
What is chronic pain bereavement?
Definition of bereavement
Bereavement is a natural and complex process that occurs when a person faces the loss of a significant element in their life. This loss may be physical, emotional or even symbolic, and the grieving process enables the suffering to be managed, the loss to be integrated and, ideally, a new path to adaptation to be found. In the context of chronic pain, bereavement is not simply about the loss of an optimal state of health, but can encompass a whole range of losses that affect the person holistically, both physically and psychologically.
Chronic pain is often associated with a silent grieving process. Intense physical symptoms are the starting point, but it is the emotional repercussions that complicate the lives of sufferers. The inability to participate in normal life activities, the change in personal identity, and the loss of life projects are all dimensions that make up this grief.
Types of bereavement
There are different types of grief that people with chronic pain may experience:
- Mourning the loss of self : a sense of loss of self occurs when chronic pain alters the self-image. It becomes difficult to recognise oneself in one's former abilities and passions, leading to feelings of confusion or disorientation.
- Mourning the loss of quality of life : chronic pain can mean giving up activities that used to bring joy and satisfaction. This may include hobbies, sports, travel or social outings. This loss creates an emotional void that can be difficult to fill.
- Mourning dreams and ambitions : when life goals and aspirations can no longer be achieved because of grief, it creates a sense of lost future. The grief associated with the abandonment of ambitions can be profound and prolonged, creating a feeling of stagnation.
- Mourning the loss of functional capacity : losing the ability to carry out the tasks of daily life, such as work or personal care, is a form of bereavement that has a direct impact on dignity and autonomy.
Why bereavement is often underestimated
Despite the scale of the suffering, the bereavement associated with chronic pain is often underestimated and poorly understood. Society tends to focus on physical pain, leaving aside the emotional and psychological aspects. The losses suffered by chronic pain sufferers are not always visible, making them less recognised by family and friends, colleagues or even health professionals.
This lack of knowledge can lead to feelings of isolation and frustration, as bereaved people often feel misunderstood and invalidated in their experience. It is crucial to recognise that bereavement linked to chronic pain is a reality that deserves all the attention and support possible, so that those affected can find strategies for navigating this difficult period.
The stages of mourning applied to chronic pain
The Kübler-Ross stages
Elisabeth Kübler-Ross, in her seminal work On Death and Dying (1969), described five stages of grief that are often used as a framework for understanding the emotional response to loss: denial, anger, bargaining, depression and acceptance. Although these stages do not necessarily follow each other in a linear fashion and not everyone goes through them in the same way, they offer valuable insight into how individuals may respond to bereavement. In the case of chronic pain, these stages take on a specific meaning.
- Denial: This stage is marked by a refusal to acknowledge the reality of chronic pain. For some people, it can be difficult to accept that the pain will not go away, and they may look for quick fixes or ignore the symptoms in the hope that they will go away on their own. This can lead to a worsening of the situation, as pain management is delayed.
- Anger: Frustration, injustice and anger are common emotions at this stage. People may feel irritated with their own body, with the doctors who have not found a solution, or even with their loved ones who do not understand their situation. This anger can also be directed at oneself, accompanied by feelings of guilt and self-blame.
- Bargaining : At this stage, the person tries to find compromises or negotiate solutions. This may mean constantly looking for alternative treatments or promising to make drastic lifestyle changes in the hope that this will help relieve the pain. This phase can also include thoughts such as ‘If I do everything recommended, my pain will eventually go away’.
- Depression: This is often the most difficult stage, marked by feelings of deep sadness, despair and loss of motivation. Chronic pain sufferers may experience depression as a result of the realisation that their lives will never be the same again. This can also be the time when psychological support becomes essential to prevent prolonged negative effects on mental health.
- Acceptance: Contrary to popular belief, acceptance is not a state of happiness or resignation, but rather a place of reconciliation with reality. Acceptance in the context of chronic pain means recognising and understanding that pain is part of daily life, but that it does not have to define the whole of existence. This allows the person to find strategies to manage the pain better and live more fulfilling lives in spite of it.
Alternative approaches to bereavement applied to chronic pain
Mourning as a non-linear process
Unlike the Kübler-Ross model, which describes bereavement as a series of distinct stages, some research points to a more fluid, non-linear approach to bereavement. For people suffering from chronic pain, bereavement can manifest itself in emotional waves, with moments of regression and progress, and an oscillation between acceptance and despair.
The two-phase bereavement model (William Worden)
Worden, a psychologist and researcher, proposes a four-task bereavement model that can be adapted to people living with chronic pain:
- Accepting the reality of loss : Recognising the loss of life as it was before the pain appeared.
- Working through the pain of bereavement : confronting the pain, understanding that it is an integral part of the process.
- Adapting to an environment in which the missing person is absent : reinventing activities and routines adapted to the new reality.
- Recreating a new identity and pursuing a meaningful life : finding ways to redefine yourself and your priorities while coping with chronic pain.
Theory of the continuity of mourning (George Bonanno)
George Bonanno has suggested that bereavement is a dynamic and flexible process, in which the individual can oscillate between moments of resilience and distress. In his view, psychological flexibility and the ability to maintain a sense of continuity are essential to getting through chronic grief without becoming overwhelmed.
Approach to post-traumatic resilience
Studies have shown that some people, despite chronic loss and pain, find ways to bounce back and even positively transform themselves through their suffering. This approach focuses on personal growth, discovering new sources of strength and redefining oneself over time.
Particular difficulties
People living with chronic pain often face specific challenges as they go through these stages of grief.
- A transition between stages : In chronic pain, people can move from one stage to another in a non-linear way. For example, they may feel overwhelmed by depression one day, then feel hopeful and try to negotiate treatment the next. This instability can make the grieving process even more difficult to manage.
- Prolonged denial: Denial can last a long time for some people, as they continue to search for miracle treatments or cling to the idea that the pain is temporary. This denial can prevent pain from being managed appropriately and worsen physical and emotional symptoms.
- From anger to incomprehension : Unlike other types of bereavement, chronic pain can lead to a sense of injustice not only about the condition but also about the reaction of others. Chronic pain sufferers may feel misunderstood by those around them or by the medical system, which can intensify anger and feelings of isolation.
- Prolonged periods of depression: Depression can be exacerbated by periods of intense pain, treatment complications or stigma. It is therefore important to recognise that depression in the context of chronic pain may require tailored approaches, including cognitive-behavioural therapy, supportive therapy, or the prescription of antidepressants if necessary.
- Difficult acceptance : Acceptance is often wrongly perceived as a stage where you have to give up all forms of struggle. In the context of chronic pain, acceptance is a process that must be accompanied by active pain management and appropriate psychological support.
These particularities make the bereavement associated with chronic pain not only complex but also unique to each person. It is essential to understand that each stage can take different forms, and can be prolonged or reduced depending on the individual situation, but also on the support and resources available.
Emotional and psychological impact
Anxiety and depression: the relationship between chronic pain, anxiety and depression
Chronic pain is much more than a physical experience; it is also a major source of emotional distress. Studies suggest that up to 50% of chronic pain sufferers experience symptoms of depression, while anxiety also affects a significant proportion of this population. Anxiety can arise in response to the constant fear of worsening pain, the stress of daily symptom management, or uncertainty about the future. This chronic anxiety can amplify the perception of pain and create a vicious circle in which physical and emotional suffering reinforce each other.
Depression, on the other hand, can result from a loss of control over the situation, an inability to participate in usual activities and a reduced quality of life. Chronic pain sufferers may experience moments of deep despair, when the hope of returning to a pain-free life seems unrealistic. These emotions can be exacerbated by the lack of support and recognition from others, as well as by the difficulty of accessing appropriate mental health care.
Feelings of guilt and isolation
The grief associated with chronic pain can also lead to feelings of guilt and isolation. Guilt often arises when a person feels that they are a burden to those close to them or that they are not fulfilling their responsibilities as before. For example, a person who can no longer participate in family or professional activities may feel guilty about not meeting the expectations of others, even if the pain is beyond their control. This feeling of guilt can be disabling, reinforcing isolation and social withdrawal.
Isolation is often the result of a combination of physical pain and the difficulty of finding people who truly understand what you are going through. Friends and family may not understand the extent of the pain or the fact that it is not simply ‘in the person's head’. This can lead to reduced social interaction, feelings of loneliness and loss of self-esteem.
Changes in identity: redefining the self in the context of chronic pain
Living with chronic pain often involves redefining oneself. People who have suffered from acute pain that has become chronic may find themselves having to adjust their vision of who they are and what they can achieve. Old social roles, such as active parent, accomplished professional or dynamic partner, may be called into question. This change can lead to a sense of loss of identity, where the person no longer knows who they are or what they are supposed to be.
Redefining oneself can be a difficult process, but it is also an opportunity to reinvent oneself and find new means of expression and satisfaction. This can include finding new interests that are appropriate to the situation, learning relaxation and pain management skills, or taking part in support groups that help to build a new social network based on shared experiences. However, it is important to recognise that this redefinition can be a long and non-linear process, with the person going through phases of resistance, acceptance and adaptation.
Management and support strategies
Mindfulness and relaxation techniques
Mindfulness and relaxation techniques are particularly beneficial for managing the stress and emotions associated with bereavement and chronic pain. Mindfulness involves paying intentional attention to the present moment, without judgement. This approach helps to reduce emotional reactivity to pain symptoms and to create a more serene mental space. Studies have shown that regular practice of mindfulness meditation can reduce the intensity of perceived pain and improve emotional well-being.
Useful techniques include guided meditation, which focuses the mind on the breath or soothing images, and progressive muscle relaxation exercises, which help to release bodily tension and reduce stress symptoms. Practising deep breathing is also a simple and effective method of calming the nervous system and reducing anxiety.
Importance of social support
Social support plays a crucial role in managing the emotional and psychological impact of chronic pain. Being surrounded by understanding people can reduce feelings of isolation and provide a sense of belonging. This can include close friends, family members, or specialist support groups, whether in person or online.
Joining discussion groups or dedicated forums allows you to share experiences with people going through similar situations, creating a space for validation and understanding. Specialist therapists, such as psychologists or mental health counsellors with expertise in chronic pain management, can also offer valuable support. These professionals can guide the person towards appropriate strategies for navigating the emotional and psychological challenges.
Therapies and support
Cognitive behavioural therapies (CBTs) have been shown to be effective in treating the emotional symptoms associated with chronic pain. CBT helps to identify and modify negative thought patterns that exacerbate pain and contribute to emotions such as anxiety and depression. A cognitive-behavioural approach can include techniques such as cognitive restructuring to replace unhelpful thoughts with more realistic and helpful ones.
Supportive therapy, which provides a safe space to discuss challenges and emotions, is also a valuable option. Therapists trained in this approach use active listening, empathy and positive reinforcement techniques to help people find their own solutions and build resilience.
Other suitable interventions include relaxation therapy or art therapy, which can offer creative and soothing ways of expressing pain and associated emotions.
Examples of self-care practices
Self-care is essential for maintaining physical and emotional balance. Here are a few simple, effective practices you can incorporate into your daily routine:
- Therapeutic writing : Keeping a gratitude diary or writing about your emotions and experiences can be a beneficial outlet for managing difficult thoughts and monitoring the progress of your pain.
- Meditation : Devoting a few minutes each day to meditation can help to centre the mind and reduce stress. Applications such as Headspace or Calm offer suitable programmes for beginners and advanced practitioners.
- Breathing exercises : Practising exercises such as abdominal breathing or alternate breathing can help to calm the body and mind. These techniques promote relaxation and help to manage anxiety.
- Gentle physical activity : Moderate exercises such as yoga or tai chi, which incorporate breathing and slow movements, can improve flexibility and stress management.
- Break time : Taking time out to relax, listening to soothing music or doing something enjoyable (such as reading or taking up a hobby) helps to maintain a better mood.
Testimonials and personal stories
Stories from people affected
The grief associated with chronic pain is a reality shared by many people, who often cannot find the words to express it. Here are a few examples of anonymised accounts that highlight the challenges and stages experienced by those going through this ordeal:
- Person suffering from fibromyalgia : "At first, I didn't understand what was happening to me. The pain was constant, but the doctors had trouble coming up with a precise diagnosis. I was devastated by the idea that my life was never going to be the same again. I felt guilty for not being able to play with my children or look after the house the way I wanted to. For a long time I was in denial, looking for answers that nobody seemed to be able to give me. The support of my online discussion group, where people with similar challenges shared their experiences, was a breath of fresh air. Little by little, I learnt to accept the situation, adjust my expectations and take care of myself."
- Person injured in car accident : "The chronic pain took me by surprise. Before the accident, I was leading an active life, passionate about my work and hobbies. Afterwards, it was as if a part of me had died. I felt overwhelmed by sadness and anger. I lost a lot of relationships, because people didn't understand why I was no longer the same. It was through supportive therapy that I found the strength to redefine my identity and begin to accept my new reality. Today, although the pain is still there, I've learnt to find joy in the little things."
Lessons learned
These testimonies illustrate universal truths about the grieving process associated with chronic pain and what this can teach those going through similar experiences:
- The importance of recognition and validation : feeling heard and understood is crucial to moving through bereavement. People going through these trials can benefit from support that recognises the legitimacy of their pain, even if it is not always visible or understood by others.
- Adaptation is a process, not a destination : les récits précédents montrent que le chemin de l’adaptation n’est pas linéaire. Il y a des jours où l’on se sent plus fort et des jours où la douleur reprend le dessus. Accepter cette fluctuation est essentiel pour progresser.
- The power of collective support : Support groups, whether online or in person, offer opportunities for sharing and understanding that help to reduce feelings of isolation. Testimonies show that social support is a source of resilience and hope.
- Redefining identity : bereavement from chronic pain requires a redefinition of self. For some, this may mean finding new passions or skills that fit their reality, while for others it is the process of learning to accept limitations while exploring ways of continuing to live meaningfully.
These life stories remind us that chronic pain and the bereavement that accompanies it do not define the whole of a person's existence. Through adaptation, resilience and appropriate support strategies, it is possible to build a life that, while different, remains enriching and full of meaning.
Conclusion
Although the grief associated with chronic pain is difficult and moments of despair are inevitable, it is important to remember that moments of peace and rehabilitation are not only possible, but also attainable. Gradual acceptance, support from others and wellness strategies offer the opportunity to reinvent life despite the pain. These steps, although complex and sometimes lengthy, enable sufferers to restore meaning to their daily lives and find new ways to enjoy life.
If you're going through a grieving process related to chronic pain, know that you're not alone. There are resources and communities ready to support you. Don't hesitate to consult specialised healthcare professionals, join support groups or explore online resources to connect with people who share similar experiences. Seeking help and sharing your feelings can pave the way to better pain management and a richer life. Take care of yourself, because every small step towards healing is a step towards a more fulfilling life.
Want to know more? Here are some links you might find useful
Recommended books
- Déjouer la douleur chronique: Une approche scientifique révolutionnaire pour reconditionner son cerveau et retrouver le bien-être – Alan Gordon, Alon Ziv
- Loss Trauma and Resilience - Pauline Boss
- Living with Chronic Pain - From OK to Despair and Finding My Way Back Again - Dr. Dawn Macintyre
Links to relevant organizations or articles
- Quebec Pain Research Network
- Pain Canada
- Living A Healthy Life With Chronic Pain - Living healthy Champlain
- Alan Edwards Pain Management Unit
- The Canadian Pain Society
These resources are designed to support you throughout your journey, whether you're looking for information, coping strategies or emotional support. Don't hesitate to explore these options and ask for help when you feel you need it. You deserve access to tools and people who understand your experience and can support you on your journey.
If you would like to discover more content on personal and professional development, please click on this link to access other similar articles.
