The 5 Stages of Grief and Chronic Pain

Elisabeth Kübler-Ross, came up with the 5 stages of grief model after years of working with terminally ill patients. I have found this model particularly helpful for understanding the journey we have been on with Greta’s chronic condition. It has kind of outlined our journey. We have not necessarily experienced these in any clean and organized order. The first 4 have been cyclical for us and the last one has slowly become the lasting one.

These are the 5 stages…

Denial is often characterized by the shock of first learning of a condition. It kind of protects us from the overwhelm of the loss. My kid has what?!?! It is the refusal to believe that this will be around for very long. The belief that it must be something else that can be more easily fixed. It is probably just a thyroid problem, a lack of vitamin D, an allergy to gluten…. We just need to figure out what the real problem is. Denial helps us to pace our feelings of grief. There is a grace in denial. And for many people maybe it is true that the diagnosis is off or the solution is easy, in which case, you are spared the other stages of grief.

Anger/Sadness I would say that for us this has often been a yo-yo of anger and sadness. Anger at how my child has been robbed of childhood, friends, and experiences…sadness at seeing photos of her before she had this pain…sadness picking her up from school and seeing the other kids milling about, carefree, anger that no doctors can figure this stupid thing out and guilt that I might have passed it on to her. Sadness that she might not be able to go to university, get married, have kids as easily as other people and plain old anger at God for letting this happen to her.

Bargaining/Desperation This often equates to bargaining with God or your higher power or the universe or Mother Nature, or whatever you want to call it. It also includes bargaining with your doctor. I pleaded and bargained with both. I pleaded with God to make her better, to give me more pain and ease hers. I bargained I would do anything, ANYTHING to make it better. As for doctors I pleaded with them to admit her to the hospital, to try medicines on her that she wasn’t eligible for until she was 18, to write referrals to send her to clinics in other countries that might be able to help.

Depression It is hard to know where to start with this one. It is a form of deep grief. It is when your fighting gives way to exhaustion. We all get there at different times. It can be scary. And you might need help. Depression is closely linked with chronic illness. It is a loss of hope. Maybe not all hope but a lot of hope. I needed professional help. So did Greta. And we needed medication. Me for a short while and Greta for longer. But this stage is when the turnaround happened. It was the understanding that we could not keep relying on others to fix this for us. It was the stage when we took things into our own hands. Because that is all we could do.

Acceptance. This is a long, hard place to get to. I might have seen glimmers of it along the way but to really get to acceptance and being willing to do what we can was a long hard road. In this stage emotions begin to stabilize and you begin to realize that despite the condition, you are going to be

ok. You can start to re-enter reality and participate in life. I don’t know if anybody could have said anything to bring me to acceptance sooner. And I am a counsellor!!!! I know about these stages!!!! Even so, it is not a head thing that you can learn and rationalize yourself through. It is kind of like a toddler who needs to wear themselves out with their tantrum before becoming reasonable again. This is the place where I hope you are meeting me, because this is the place where you can start to do the true work of participating in life again.

Maybe you won’t have to go through all the stages. Maybe you are able to move from anger to acceptance within a short period of time. I wish our process had been faster and less debilitating but, like so much in life, we do the best we can with what we have and once we know more, we do it differently. If you have tried many things that haven’t worked for your child’s chronic pain, you might also be coming to the place of acceptance and becoming ready to focus on improving your child's functionality and ability to participate in life again rather than waiting month and month and year after year for something to take the pain away. It is the point where you are no longer relying solely on doctors to solve the problem, but joining with doctors to improve the situation in whatever way you can. Hopefully one day there will be treatment that makes a big difference in your child’s pain. Until then, there are some concrete steps you can take to improve your child’s quality of life and regain your sanity. It has made a world of difference for us.

~ Carla

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