Acceptance: It’s not about giving up but living life despite chronic illness

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:

  • Denial
  • Anger
  • Bargaining
  • Depression
  • Acceptance

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.

 

 

The 5 Stages of Grief
The 5 Stages of Grief

 

 

An example of these stages in action can be as follows:

Denial 

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.

Anger

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.

Bargaining 

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.

Depression 

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.

Acceptance 

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:

 

 

imgres-1

 

 

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.

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12 thoughts on “Acceptance: It’s not about giving up but living life despite chronic illness

  1. I think you’ve applied Kubler-Ross’s principles really well to what it is like to have a chronic illness. And it is so true that we cycle in and out of the different stages. Each new change or new symptom has the potential to throw us off and yet the hope is that we move to acceptance more quickly as we progress.

  2. I ponder this a lot… My life is like a roller coaster, full of ups and downs and always moving in and out of these stages over and over again as sypmtoms come and go moment by moment, day by day, and year by year. I too have come to acceptance with using my wheelchair. My initial embarrassment and concern about what others are thinking has been replaced with gratefulness to be out and about at all! Sometimes “bad” things turn out to be blessings. Thanks for your post. 🙂

    • Thank you for your lovely reply Michele and am glad that the post resonated with you. I am the same as you, I find I am constantly moving between these stages over and over because of the introduction of new symptoms or the worsening of others, and trying to find acceptance of my health status is a constant battle, especially when hospital appointments come round and more tests are requested or the diagnosis is questioned and I am right back at the start again! I am glad that like me, you have accepted your wheelchair and are grateful for it – exactly how I have felt about it! It’s a new friend now – keeping me safe and away from any potential falls or accidents!

      Take care

      Rhiann xx

  3. Hi Rhiann,

    It’s very interesting to read how the stages of grief manifested in your life. I think acceptance is very powerful and liberating. I have also found that, after passing through these stages and reaching acceptance about my own health, I am more comfortable with things as they are and I’m learning to feel confident about the decisions I make — and learning to make harder ones. Judgment or fear of it really hinders, doesn’t it?

    -Ashley

    • Hi Ashley

      Thank you coming to the blog and taking the time to post a comment to the post, it really does mean a lot! I am glad that you have found acceptance with your own health and it has made you more comfortable and confident about where you are at with your health and in terms of making decisions regarding your care, etc. You are right, emotions such as the fear of being judged or fear itself really does hinder the decision making process and making new introductions in your life such as starting using a wheelchair or other mobility aids, but hopefully by truly accepting the need for them then the fear of being judged, etc will not matter.

      Take care

      Rhiann xx

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