In 1969, the Swiss American psychiatrist Elizabeth Kübler-Ross published her groundbreaking book called ‘On Death and Dying’ in which she introduced the now famous ‘Five Stages of Grief’. Her theory suggested that there are five stages of adjustment after a loss, which are:
The theory as suggested by the book was to describe the five stages of grief in terms of a bereavement of a loved one. However, these five stages of adjustment have been applied to many areas that involve a loss, or a change in a person’s situation such as an end of a relationship and as most spoonies would be able to relate, these five stages of grief can also be applied to life after a diagnosis of a long-term chronic condition or the onset of a progressive disability – mourning the loss of good health, the loss of a future that we may not have as a result of the diagnosis as well as mourning for activities and other situations that was once was enjoyed but which may be prevented by the symptoms of the chronic illness or disability.
An example of these stages in action can be as follows:
We immediately are in denial of the new situation and cannot accept that it is true. In terms of chronic illness we may question the doctor and ask whether he is absolutely certain that the diagnosis is correct or even ask to be retested as we cannot accept the diagnosis as fact. We may also not be open to the new medications or treatments being suggested as that would mean the condition is real.
Like many others, anger is a regular feeling when living with chronic illness. We are angry at the illness itself due to the severe symptoms that it causes; angry at the limitations it places upon our lives; doctors who made the diagnosis as well as those who didn’t believe you. Honestly, we are often angry at people around us who are busy getting on with their lives and who are able to do all the things that we are no longer able to do. In my opinion, anger is one of the five stages that those living with chronic illness reverts to, especially during times when symptoms are particularly bad and in times of a flare.
Although anger stays for a while, we eventually progress onto the third stage which is bargaining. Often, when living with chronic illness we become lost in a world of “What if” and “If Only” statements. We want to return to the life we had before illness and so we attempt to make deals with our bodies. We promise that we will take all our medications correctly, and keep to a healthy diet as well as exercising regularly in exchange for the condition to disappear. We promise to do anything in exchange for a cure; anything to return to a normal life.
As times passes, however we slowly realise that bargaining isn’t working. As there is no sign of a cure or a return to a normal life we begin to lose hope and instead slide into a depression. This isn’t a sign of a mental illness however but a response to the loss of our previous life. We turn inward and withdraw from life, and get stuck in the fog of sadness, despair and hopelessness.
The move into acceptance is a slow and gradual process. To reiterate it is not a state of being perfectly fine with being chronically ill but is perhaps a state in which we have more good days than bad ones.
However, this is not a single process, however but one in which we often regress back to certain stages and the need to work through them all over again, especially at times when the condition gets worse – and so we are back at the denial phase and need to work through all the stages just like we did after the initial diagnosis. As the condition gets worse or we go through yet another flare we are essentially mourning the loss of a piece of ourselves whether it be the loss of mobility, freedom, loss of relationships or the loss of a career.
This need to move into acceptance is brilliantly summed up by a famous quote by Joseph Campbell:
This post is about acceptance – to acknowledge the changes in our situation; the ongoing changes in our health. It is not about being completely fine or deliriously happy about the illness or disability but rather about finally recognising and acknowledging the permanence and reality of life after diagnosis. To learn to live with the illness as best we possibly can and readjust to the new reality and as the quote above suggests to let go of the past and the plans we once had and to embrace the life we have now and move on the best way we can. Acceptance is not about giving up.
I thought about the ‘Five Stages of Grief’ recently after a day out with my Personal Assistant. As my regular readers may be aware, I have had to start using my wheelchair on a much more regular basis, especially when out for hours due to the worsening weakness in my legs. Last week, my personal assistant commented how much more confident I seemed since I started using the wheelchair and how I seemed to enjoy days out much more. A reason for this is because I am in the wheelchair, I am not constantly on edge that my legs will give way, or on the days when I am bad I am not waiting for my legs to collapse.
However, as my regular readers will know, I live with constant dizziness and regular bouts of vertigo and as a result of the constant movement whilst in the wheelchair, it was very difficult for me to use it. So why do I seem so much more confident using the wheelchair than sitting down, and enjoying being out much more when it causes such symptoms? One possibility is that as suggested by the theory discussed, I have finally accepted that I need the wheelchair. Perhaps, I have finally moved through the these five stages and now accepted my new reality. Before, I was also not only worried about the wheelchair’s effect on my vestibular systems but also worried about the judgements of other people, however, that no longer is a concern of mine and happy to be in the wheelchair. Perhaps, it is much easier to live with a new situation when we have accepted that new situation. We need to embrace the new reality to live life to the fullest despite any limitations that chronic illness has placed upon out lives.