If you have ever lost someone close to you, you might have learned about the 5 stages of Grief, made popular by Elizabeth Kubler-Ross. Well Dr. Jennifer Martin, PsyD, wrote an article creating her own adaptation to these stages for people experiencing chronic pain or chronic illness. I found her adaptation particularly validating for my chronic pain & illness experience, after having written my own version of the grief I experienced, so I wanted to share them with you and go through each stage and how it relates to the chronic illness experience.
So What Exactly IS Grief? And How Is It Different For People With Chronic Pain & Illness?
Anytime we experience a major life change or stressor, such as being diagnosed with a chronic illness, we can experience feelings of grief & loss. With a chronic illness, sometimes you go through periods of feeling well with disease activity that can make the stages of grief start over. We can grieve the loss of our abilities, our identity and roles in life we might be forced to give up due to our physical needs. It’s important to recognize and feel these feelings of loss, so that we can release them and create new ones. Dr. Jennifer Martin PsyD, explains this process in her 7 Stages of Grief for Chronic Pain & Illness.
Anger: Once we realize that no amount of pleading or desperation will change our diagnosis, we start to get angry. Angry at having the illness, angry at the lack of a cure or treatment options, angry at the limitations it imposes on you.. the list goes on. It’s important that we allow ourselves to feel and express these feelings. We need to really work through this stage in order to start healing and move on to the next ones..
Anxiety & Depression: Dr. Martin describes this anxiety and depression as an ‘appropriate response to a loss or life altering situation’ and points out that this stage can ‘feel as though it will last forever’. I find this stage comes and goes with the repetitive cycle of worsening and then improvement of symptoms, like the ebb and flow of the tides. It’s important to recognize that we are grieving the loss of a life we once had, loss of abilities and wellness as well as experiencing anxiety about what our future holds. All of this is normal and it’s ok.
Loss of Self & Confusion: This stage is where we really start questioning who we are and where we fit in. We undergo a sort of ‘identity crisis’ where we ‘… may question what your purpose in life is now’, as Dr. Martin states. This can come on the heels of anxiety and depression or happen alongside it, but again, this stage is necessary for healing and is completely normal.
Re-evaluation of Life, Roles and Goals: Once we start questioning who we are now and where we fit in, we are inevitably forced to rewrite our life narrative by exploring new roles and goals for ourselves. We explore ways to incorporate aspects of who we used to be into our ‘new normal’ and start to mold our new purpose out of the ‘clay’ we are given to work with. For some, it’s exploring new career options that allow us to have flexibility and work from home, for others its finding small ways to do things we enjoy but not ‘overdo it’.
Acceptance: (I like to call this stage adaptation or integration) This stage is where we have fully integrated our illness into our lives and have come to the realization that while it may have to be a normal part of life for us, we can still grow and experience joy in our lives. This is not simply being ‘ok’ with being sick – which is why I tend to not like the word ‘acceptance’ – but it is coming to terms with and finding ways to integrate the illness without making it the ‘driver’ or the ‘main character’ in our life story. We find ways to properly manage the illness and care for our mind and bodies when we need to, but also find ways to be happy, experience new things and surround ourselves with people who understand our needs and help us achieve our goals.
It’s important to remember, as Dr. Martin says, that these stages do not always come in this order, nor do they ‘end’. Sometimes we can experience them and not return to earlier stages, but it is normal to experience ‘acceptance’ and then head back to ‘anger’ or ‘depression’ here and there depending on how our diseases behave and as life throws us curve balls. There is no ‘one size fits all’ way to grieve loss or life changes, we do the best we can with what we have.
Are you having a difficult time adjusting to your chronic health condition? Not sure how to make sense of it all?
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