I’m sure some of you have heard of the five stages of grief developed by Elizabeth Kübler-Ross. Kübler-Ross developed these stages to explain the process individuals go through who are near death. But did you know that these five stages can be used to explain the process people go through when diagnosed with a chronic illness or chronic pain? Below, I will explain how these stages relate to those of us with chronic illness or chronic pain. Along with the “depression” stage, I have added anxiety because I think this is common in most of us who experience a chronic illness or chronic pain. As you read these, think about which stage you may currently be in. Remember, these stages are not linear. You can jump back and forth between stages depending on where you are at in your diagnosis.
Denial
In this stage, the world becomes meaningless and overwhelming. Life makes no sense. We are in a state of shock and denial. We wonder how our life is going to change and how we are going to live with those changes. Denial and shock help us to cope and make survival possible.
This stage can be dangerous for people with chronic illness/pain because at this stage if they are in denial about their illness or pain, they may not take the necessary steps to get themselves the treatment they need.
Example: “It’s not a big deal, it will go away”
Anger
Anger is a necessary stage of the healing process. Be willing to feel your anger, even though it may seem endless. The more you truly feel it, the more it will begin to dissipate and the more you will heal. There are many other emotions under the anger and you will get to them in time, but anger is the emotion we are most used to managing. Your anger has no limits and it may extend not only to your friends, doctors, your family, yourself and your loved ones.
Example: “This isn’t fair! I didn’t do anything to deserve this!”
Bargaining
This is the stage where we want more than anything for life to be what it once was. We become entrenched in “if only” or “what if” statements. Guilt is often bargaining’s companion. The “if only’s” cause us to find fault in ourselves and what we “think” we could have done differently. We may even bargain with the pain or illness because we would do anything not to feel it anymore.
Example: “Please just don’t let this ruin my life”.
Depression (and/or Anxiety)
After bargaining, our attention moves squarely into the present. Empty feelings present themselves, and grief enters our lives on a deeper level, deeper than we ever imagined. This depressive stage feels as though it will last forever. It is important to understand that this depression is not a sign of mental illness. It is the appropriate response to a loss. We withdraw from life, left in a fog of intense sadness, wondering, perhaps, if there is any point in going on. Depression after a loss is too often seen as unnatural: a state to be fixed, something to snap out of. Being diagnosed with a chronic illness or experiencing chronic pain is a loss – a loss of the life you once had. Depression is one of the many necessary steps along the way toward healing.
Having a chronic illness or chronic pain also may bring up feelings of anxiety; anxiety about what the future holds, anxiety about not being able to live up to expectations now that this illness or pain is present, anxiety about social situations, anxiety about medical bills, etc.
Example: “I’m going to be in pain forever so why even bother”.
Acceptance
Acceptance is often confused with the notion of being “all right” or “OK” with what has happened. This is not the case. Many people don’t ever feel OK or all right about having to live with pain or an illness for the rest of their lives. This stage is about accepting the reality of your situation and recognizing that this new reality is the permanent reality. We will never like this reality or make it OK, but eventually we accept it. We learn to live life with it. It is the new norm with which we must learn to live. We must make adaptations and alterations to our lives. We must find new things that bring us joy.
Example: “I’m not going to let this define me. I will learn to deal with this the best I can”.
Pat x
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Bananas5
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Hi Pat, that's a brilliant summing up, we have to be aware that a chronic illness diagnosis in physcological terms is classed as a loss. The other thing that slows the acceptance is when other losses occur at or around the same time, in many cases we loose our jobs , but to name one . I lost my dignity because they labelled me as having a mental illness, when in fact I have more than one chronic illness including ongoing pain. But Hey I survived and came through another pain prevocking illness to once again be treated like an idiot and told tests were alright when they are not. No wonder some of us patients crack and go under at times.Life goes on and some of us get fed up of being but through the same process just to come out the other end with the same outcome, pain pain and more illness and as you say some never accept. Dare I say have a happy Easter. Bye for now.
It is Katie a simplified version to help people understand. We get so many who want a magic pill or to turn back the clocks.. And of course it has a knock on effect to those closest who also have to go through a loss.
I know how feel I had to diagnose myself I know a lot of us have to do that but I had told this Dr back in 1993 some thing wasn't right but in 2004 I had to go I'm there and demand something be done I was going partially blind in one eye there was numbness in my hands and feet. I mean really how ignorant can I doctor be well I guess I had one and I think if I had been listen to I wouldn't be in this state I think I still going there all the stages you are never done with any of them. If you don't know I have MS. Sorry I had to let that out my Uncle has passed away 8 days ago and he asked me to take care of his Affairs that was before I was diagnosed so it is very challenging and my brother and one sister are being idiots they seem to think he left monies somewhere. And I say if you find it let me know. He has not sorry there’s that anger coming out again. And this is one of the holiest time of year and to me it’s not being opus there’s another oneI better sign off now goodbye
Sorry to hear of your loss and the added stress to tie up the affairs of your uncle. Sadly everyone expects people to have money stashed away but that is often not the case, in fact some people don't even leave provisions for their own funerals, that's life sadly. Going back to your health, seems you have been suffering with the stress of poor diagnosis for a long time just like myself, to spite evidence to the contrary.It is very difficult to change a doctors trend of thought don't you think.? I recall many years ago a late freind of mine being treated as mentally incompedent when in fact she had a rare debilitating disease which neither of us could pronounce, fortunately when I wrote it down a paramedic beleived us, she had all the classic signs plus others in her family. Take care the doctors don't always get it right do they????? Hope expressing your feelings has helped you start to accept your losses don't feel you have to apologise you are going through a rough time, bye for now, will be thinking of you.
I am familiar with Elizabeth Kübler-Ross. I studied what she said when I did bereavement counselling in the 1970's. It is a model which has accuracy and inaccuracy.
I have to be careful because there is a difference in response in the Genders and there is a difference in response across different people as well as a difference in responses across age ranges. One needs to observe oneself. I am finding that my body state determines the emotion and I have a choice whether to remain in that state or to use movement techniques to move out of that state. Sleep has an influence on stress.
The human body is an engineering system. There are many subsystems in the human body. There is such a thing called a stress breakdown point below which we function and above which we fall apart. Our environment and social connections provide stresses. The affect of a long term health disability is that there are new skills which require to be developed. There is a brain which has components which can suffer from exhaustion and then refuse to function effectively.
Elizabeth Kübler-Ross reports symptoms that take place in particular environments. She reports symptoms based on a emotional model that we make assumptions that we have common words for emotions that can be understood. We do not. There are subtleties of depth and we can move in and out of emotional experience in a matter of seconds.
Antonio Damasio wrote a book: "The Feeling Of What Happens: Body, Emotion and the Making of Consciousness". It is a tough read because he is challenging the models of people like "Elizabeth Kübler-Ross". He is bringing back the William James model and improving upon it and correcting some of the errors that William James made.
"Antonio Damasio ... is a Portuguese-American neuroscientist. He is currently the David Dornsife Professor of Neuroscience, Psychology and Philosophy at the University of Southern California and an adjunct professor at the Salk Institute.[1] Damasio heads the Brain and Creativity Institute, and has authored several books: his most recent work, Self Comes to Mind: Constructing the Conscious Brain (2010), explores the relationship between the brain and consciousness.[2] Damasio's research in neuroscience has shown that emotions play a central role in social cognition and decision-making. "
Thank you, Johnsmith and bananas5 I find what you say is very helpful. In the past I have, unfortunately, made important personal decision based on singular information that had turned out to of been detrimental to my situation. ’Please note this was not information that was received from this group’. As such I personally find that when it comes to my health I have to be as analytical in my thinking as I can. From my personal perspective, I find this is only possible when I am presented with the different variables when forming a conclusion. For me these offerings of varied views on posted topics is what makes this site of such a value to me.
I have listened to a post of yours silverbadger on another forum.. You suffered much in a very short space of time and made judgements based on info you had at the time. Hindsight is a rare talent most of us don't possess so you did right at that moment.
I have shared my post as a guideline to simplify what we go through. It can be analyzed and added to in depth but the feelings and emotions are still there.
In my own life I lost my sight over 30 years ago. Incurable, inoperable and irreversible. It has never changed so I have been able to adapt my life in such a way that I can do things today as I did last year or 19 years ago.
Yes you have to adapt what you can do now...not what you could do before your disability or illness. struck.
You have lost something precious which can never be restarted.
Thanks for the reply. A short term problem which we recover from - no depth is needed. A long term problem with no recovery - depth is needed. We need the depth to make the life changing adaptations.
A problem that is present now is that there are issues in research done before 2005. 2005 was the year that the scientific community started to publish papers on the medical fraud that existed in papers. Many Journals now when they receive papers on psychological issues demand a copy of the entire investigation results before they consider publishing.
I was at a conference a short time ago. An issue was raised concerning evidence based medicine. The issue being that there is an evidence based medical trial. When the medical expert uses the recommended treatment from the evidence based trial they never determine where the patient is on the population curve of results.
I am not sure why you need research into this simple evaluating.
It is an emotional feeling brought about by loss. Same as bereavement.
Do we need research into why we feel sadness? Anger? Blame? Isn't hard enough for most humans to come to terms with without in depth analysis?
For a while some years ago they would have 'counselors' outside the eye clinics in Scotland. They would offer help and support to those diagnoses with sight loss.
What I had living abroad was nothing.
Now I can look back and help others who have gone through similar to me. Of course the counselors have long gone. H&S stepped in.
We do. Because we need to make informed decisions. Everyone is different and are in different places. I now advise people against counseling with evidence to say why?
I am a strong believer in conversations involving understanding to look at situations.
"Real emotion" often means going nowhere fast when trying to solve problems and developing constructive strategies. I am into how do I change emotion and not dwell in that emotion? This is very different from the work of Elizabeth Kübler-Ross.
You don't have to go though anger and probably blame. We often do because we often lack the skills to let it all go. The skills of letting go can be taught and they lie in the religious traditions. Note: it did take me a long time to realise this because the teachers to teach the skill of letting go are few and far between. Often it requires many teachers because of the teachers are only available to give instruction for short periods of time.
I know how feel I had to diagnose myself I know a lot of us have to do that but I had told this Dr back in 1993 some thing wasn't right but in 2004 I had to go I'm there and demand something be done I was going partially blind in one eye there was numbness in my hands and feet. I mean really how ignorant can I doctor be well I guess I had one and I think if I had been listen to I wouldn't be in this state I think I still going there all the stages you are never done with any of them. If you don't know I have MS. Sorry I had to let that out my Uncle has passed away 8 days ago and he asked me to take care of his Affairs that was before I was diagnosed so it is very challenging and my brother and one sister are being idiots they seem to think he left monies somewhere. And I say if you find it let me know. He has not sorry there’s that anger coming out again. And this is one of the holiest time of year and to me it’s not being opus there’s another oneI better sign off now goodbye
That's OK we all rant at times. Are you angry cos your Uncle has died and your siblings arent supporting you? Or angry cos ou can't do what you want due to your MS?
I’m not angry about my uncle I know he’s in a better place because he was very sick he swas on dialysis 3x a week his body was shutting down. It’s my siblings he didn’t have much money and I have to deal with his bills. But all I hear from my brother is Sandra has the check book yes but the check book doesn’t have the money
Oh and yes MS doesn’t help at all I can’t run up the stairs to clean his apartment out and I can’t depend on him. Now you probably think I am bossy but when my dad died my other sister and I cleaned out his condo in one week. She lives out of state it’s just a big mess and no one is doing anything about it my son and his friend has done more I have to stop this isn’t helping me either. If you have anything helpful to say I would love to hear it.
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