The Experience of Grief in Chronic Pain/Illness
Written by: Stacey McDonald RP (Qualifying)
In Canada, one in five people will experience chronic pain at some point in their lifetime. It’s more difficult to find statistics for chronic conditions due to the wide range of illnesses that may fall under this umbrella such as IBD/IBS, migraines, diabetes, and connective tissue disorders - however some studies estimate that 12.9% of Canadians self-report that they have 2+ chronic conditions. These numbers show us that the likelihood of us experiencing or knowing someone who is impacted by chronic pain or chronic conditions across their lifetime is all but guaranteed.
Oftentimes when we think of living with chronic pain or chronic conditions, we are quick to think about the many ways in which the physical symptoms impact our lives or the lives of those we know that are living with them. While those physical symptoms are incredibly limiting, frustrating, and require a whole lot of re-negotiating and adjustment, the mental toll of living with chronic pain/conditions is often the most enduring.
Those that live with chronic pain/conditions have a higher frequency of experiencing co-morbid mental health concerns such as depression, PTSD and anxiety. In addition to these conditions, it can be common to experience low self-esteem, low self-efficacy, anger and feelings of disempowerment. However, an often overlooked experience for those living with chronic conditions is that of grief.
“Grief turns out to be a place none of us know until we reach it.” - Joan Didion
Far too often, we associate grief only with the loss that comes with death. However, there are many more experiences that can result in grief. One of those is the development and diagnosis of chronic pain or a chronic health condition, and while this feeling can be labelled “grief” it may be unlike any grief you have experienced previously, and in many cases can be more enduring. In fact, in a study by WebMD, 24% of those who were diagnosed with a chronic condition reported still intensely grieving more than 12 months after diagnosis - more than any other category .
With diagnosis of chronic conditions comes a lot of change and uncertainty. There is no part of one's life that does not experience immense change once a diagnosis occurs, from relationships to work to identity. While these experiences need to be grieved and processed, they should not limit your ability to function, especially after considerable time has passed. This is where therapy can often be helpful, especially working within approaches such as Acceptance and Commitment Therapy (ACT) which helps you accept your feelings and experiences without staying stuck, allowing you to live your life according to your values just with the necessary changes to accommodate the needs of you and your chronic condition (e.g. rest!).
While Erich Lindemann’s grief work specifically addresses grief due to loss of a loved one, we can adapt these tasks to outline the necessary processes to grief related to a diagnosis of a chronic health condition.
Emancipation from Bondage to the Deceased- This task can be adapted to suit chronic conditions by thinking of it as having strong connections to who we were before the diagnosis, symptoms, etc. This connection is what is linked to all the negative emotions and reactions we associate with grief. In Lindemann’s description, we must move on from these connections in order to be able to move through normal grief and build new relationships, however, that task is something that is disputed. Most of us will never fully move on from loss whether that is of a loved one or a previous identity that has now changed due to illness. That’s entirely normal, and I would argue that this stage should involve more of the task of “growing around grief” as outlined in the image earlier. We are emancipated from the connections to our past self in small ways that allow us to move forward and create new, fulfilling identities and lives with our new needs and values taken into consideration.
Readjustment to a New Environment in Which the Deceased is Missing- When you lose a loved one, your world is both completely changed and also still the same. The same can be said for receiving a diagnosis of a chronic condition - your partner, job, home, pet, interests may not have changed but you, your needs and your values may have. So in order to move forward, we need to adjust how we go about living in the world that is mostly the same to suit our different needs. For example, you may be able to work from home to avoid the fatigue you get from commuting or you may need to use mobility aids in order to participate in hobbies you love like sports.
Formation of New Relationships- While it may be necessary to form new relationships after a chronic health diagnosis, this task could also be adjusted to include forming a new relationship with yourself both identity wise and your body. Chronic health conditions can feel like your body is betraying you, and many will learn to disconnect in order to remove themselves from some of their pain. As we learn to live with grief we can get curious about who we are now, what we value, and how we want to move forward.
Just like the death of someone close, a lot of reorganising and renegotiating happens when you’re coming to terms with a chronic health diagnosis. This is where connecting with others is important, whether that is through a support group, loved ones or a therapist having someone to process all these changes can be beneficial for your mental health and help you to avoid some of the more long-term psychological consequences of grief, change and living with daily symptoms.
Resources/References
https://www.canada.ca/en/health-canada/corporate/about-health-canada/public-engagement/external-advisory-bodies/canadian-pain-task-force/report-2021.html#fn1 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4910465/
https://cpa.ca/docs/File/Sections/Hospital/Chronic%20Pain%20Role%20Clarity-Psychology.pdf https://whatsyourgrief.com/grief-work-grief-theory-erich-lindemann/
