Grief and Chronic Illness
Last updated: November 2022
We most commonly associate the term grief with death. It’s used to describe the emotional state we experience when someone close to us passes away. In its simplest form, though, grief is our natural response to any significant loss. It’s experienced keenly by people at the end of relationships, on the loss of a job, or on leaving behind a beloved home.
It’s also something many people experience as part of a chronic illness like ankylosing spondylitis.
Diagnosis forces us to confront a different reality
There are limitations to accept, both in the present and in the years to come. The lives we mapped out for ourselves are no longer certain.
Symptoms like pain, brain fog, and loss of mobility change our concept of who we once were. People use different labels in relation to us, impacting our identity. Relationships can shift, work-life and financial stability can change. Our self-esteem is challenged as our bodies look, feel and function differently to how they once did.
Amongst all of this can be a deep sense of loss and an emotional experience of grief that is profound and painful. And like stress, prolonged grief can exacerbate AS symptoms and create a cycle of pain that is hard to escape.
Therapy can be helpful
Finding a psychologist who specializes in chronic illness can provide valuable support in working through these complex emotions. A therapist is an often overlooked but important role to consider for your healthcare team. This support can be particularly helpful when feelings of loss, anger, sadness, or depression are proving hard to shake.
We often hear about the Stages of Grief model first put forward by Elizabeth Kubler-Ross. Most of us who have experienced chronic illness could identify with aspects of denial, anger, bargaining, depression, and acceptance in our journey with AS.
In recent times there has been discussion of a sixth stage of grief not included in Kubler-Ross’s original text which caught my attention: that of making meaning.
Making meaning from suffering and loss also featured in Viktor Frankl’s book, “Man’s Search for Meaning.” In the past this would have made no sense to me. How can meaning come from the pain or loss of a miserable disease?
Since reading and exploring more I’ve begun to see great value in working through the grief of AS to find meaning. Like most things with this condition, it’s not a one-size-fits-all but a unique and personal perspective.
Permission to admit difficulty
Making meaning of chronic illness starts with the permission to admit that it’s hard, and that it’s absolutely worthy of all the emotions that accompany the experience. Positivity culture has tried to erase the reality of suffering, but denying pain and loss serves no one in the end. For everyone with AS this illness is now a part of our life story and not a source of shame or something to be swallowed in silence.
I have found meaning by working as a coach to help those with AS better self-manage their health. Others find meaning by advocating for AS awareness and reducing the delay to diagnosis.
Meaning for some people is found in the dignity they show each day while living in constant pain. Others will find meaning through their resilience in continually trying new treatment strategies for AS when all previous efforts have failed.
In its simplest form, meaning can be found in just acknowledging and working your way through the grief towards a new version of life that feels like you.
If you are finding the unresolved grief related to your own loss of health to be overwhelming, please reach out to support services in your area.
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