The stages of living with a chronic illness, disability or pain

[Bananas5]

Something we could all benefit from listening to....it explains so much

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

[AmandaLG]

Hi Pat,

A great post..it is definitely a process people go through when diagnosed with chronic conditions, my daughter is looking at this very thing for her Masters degree. She did undergraduate at Cardiff and her final dissertation was on this subject. She interviewed a group of volunteers at a Fibro/CFS support group for her research and the data she collected very much supported that people living with chronic conditions do go through a grieving process for their "old life" and suffer the same as those coping with grief for a loved one.

So pleased that this information may be of use to people in understanding their feelings and the process we go through in learning to accept what we cannot change and ways to try and improve our daily lives.

One point that did come out of her study is that overall people with chronic pain and fatigue conditions were (eventually) accepting of the limitations of their conditions and had positive attitudes to life in general.

So we are an upbeat if tired and pain filled bunch!

Amanda

[Bananas5 in reply to AmandaLG]

Very interesting and thanks Amanda. I should include disability in the heading as that fits me rather than chronic pain.

Acceptance is the ultimate goal and far too many never reach it. Having been involved with research and campaigns for those with CP many say their accept their lot when in fact they don't!

My own David who broke his back over 30 years ago, has Ankylosing spondylitis and much much more - lives with relentless pain but is still angry for a lost life.. And judging by posts on these forums...most want that life back too.

And as his carer I miss that life too but the past is in the past so leave it there.

x

[Shazzzy]

I remember reading about Elizabeth Kubler-Ross many years ago, an amazing female pioneer in the medical community. I should imagine her ideas on the process of death are very similar to what disabled and seriously ill people go through, as well as many others. It is a coming to terms with a situation you have to eventually accept to find any peace within yourself. I have seen people who do not accept their situation thrashing about themselves blaming others, becoming bitter. It is not pretty and it does nobody any good least of all the person concerned. I would definitely recommend reading what EKR had to say, she was a very caring and intelligent human being.

[Bananas5 in reply to Shazzzy]

Totally agree. All loss is relevant. Even as we grow older we think about childhood and where have the years gone. And look how young Policemen are!

I hoped people would read it and think but sadly too many are lost in their own grief or want a magic cure

x.

[Bananas5]

Cast your mind back to before he was diagnosed with MND. He astounded his peers with the work he had done and papers he had written.

Like us all he adapted. He knew what he wanted to do with what he had and how he could do it.

In life we all change and adapt. Maybe getting married. Or having children. Or moving. It matters not whether you have a disability or chronic illness. You go with what you can do and get help for those things you can't.

x

[Springwater]

Pat just read your post it was very helpful to me I learned alot thank you for sharing it lots of love lorraine xxx

[Bananas5 in reply to Springwater]

Glad it helps explain what you go through. And even more...hope you come through intact!!

x

[waylay]

Thank you for this

[uggycat]

Very good insight

[Annunnaki]

Hi.

I was directed to your post. You write really well and explain the stages as applied to chronic illnesses well.

Most people don't realise how this applies to EACH and EVERY loss in our life, from loss of limb to loss of mobility, sight or even ability to do things like you explain. I've got a drafted post exaiming how this apply to Mental illness I need to finish and post.

Hope you have a Happy Easter or Cellebration of Your Tradition. Hugs. 💗

[Bananas5 in reply to Annunnaki]

Thank you. Most welcome and glad it makes sense. Be interested in hearing your MH post and where, if, it differs.

Yes we have Easter albeit in warm all year round sunshine!

Pat x

[Annunnaki in reply to Bananas5]

I'll post it here too then.

Sun...shine? What's that?? I cant clearly remember... 😜

Maybe we should swap places! You'll be helping my memory so much! 😀 💗

[Edwina47]

All very true,but it takes a long time to come to terms with chronic pain because we always think we will be better by tomorrow,not worse as in many cases,we don’t want to accept we can’t do the things today we did yesterday,having had chronic back pain for several years & 2 back operations,I am worse now,but have come to terms with it now,at least I am able to get up & go out not always on my own,but realalise that so many people aren’t able to do this,which makes accept what I have & feel so blessed to be able to get around ,enjoy your day

[Bananas5 in reply to Edwina47]

Acceptance is a stage many many people never reach. Understandably too. But by adapting what yu can do with what you want to do is perfectly possible.

x