The Grieving Stages of Chronic Illness

‘When we lose who we were, to become who we are. ’

In this guide, we will seek to understand why we feel grief and how chronic illness affects us
mentally.

For a chronic health sufferer, there are many changes one goes through when health
impacts their life. The many changes one can go through can feel like you are losing yourself,
and others as you adapt your life and routines to incorporate your illness.
When speaking to health sufferers who are new to chronic illness, you’ll find that many will
go through the typical stages of grieving. Shock, Denial, Anger, Bargaining, Acceptance and
more. This guide is designed to support you through the stages and equip you with the tools
you need to regain control of your life with chronic illness.

Class Summaries
Class One: The Grieving Stages
Class Two: Fear Of Loss
Class Three: The Toolkit
Class Four: Acceptance

To begin, we will learn about grief and why we feel it.

What is Grief?
Grief, put simply, is a response to loss. Most often associated with death and the loss of a
loved one, grieving occurs when we lose something we valued in our lives and will never get
back. In the dictionary, the word grief is described as intense sorrow, especially by
someone’s death. And yet this is only the beginning of the discussion when it comes to
understanding why we feel grief in the first place.

To understand grief, we first must understand our own values and what we feel is important
to us. To most, the grieving stages are related to death and the loss of a loved one through
tragic circumstances beyond our control. But this is not originally where the grieving stages
came from.

Over the years, many scientists in the field of psychology have studied and produced models
that brings a structure to what the grieving stages are, what you can expect of each stage, and
the tools you can use to overcome each emotion so you can achieve acceptance. What most
do not realise that almost every grieving stage model is based originally on chronic health
sufferers and terminally ill patients

How do the grieving stages relate to chronic health sufferers today? We know that some of
the original models were based on terminally ill patients, but how do we, as chronic health
sufferers experience the stages in our everyday life?

For some health sufferers, they are born with their health issues and learn through others
that what they are going through isn’t a normal occurrence. For others, they have an illness or an injury that happened to them later in life, which shifted their entire life in a new direction as they
learn to adapt to their new circumstances.
It is here that I wish to bring another group of very important people into the mix. In this
guide, the focus is not only on the sufferer. The individual who has had their life completely
altered by illness. This is where I mention the families, friends, and support network that is
also affected when someone they care about is sick or injured, and how it can impact their
life too.

As a society, we underestimate the impact chronic illness can have on communities. When
one suffers, so do the others around them in many different ways. A father can grieve the
loss of who their child was before illness impacted their life, and can also feel powerless to
do anything. A friendship changes as the things you used to be able to do you now can’t, and
you have to choose whether you both fit in each other’s lives anymore. The
same can be said for any relationship. You may even have to change careers or leave work
entirely because you can’t manage the job you used to have with the circumstances you
have now.

When your life is impacted by chronic illness, the lives of those around you change, too.
When speaking about this with other chronic health sufferers, the common stories I hear are
the loss of friendships, relationships, and careers due to their own health. But an even more
important story I always hear is how lost a sufferer feels. They don’t know what their life is
about now, or what their purpose is, as they feel they had their choice taken from them.
Every chronic health sufferer will feel this way at some point in their life, the loss of who
they were to become who they are. And it is one of the most important stages of the
grieving process for chronic health sufferers there is.

If you cannot accept who you are now and learn to adapt to your health, you will never
achieve acceptance in any part of your life. This is the final and most crucial stage of grieving
for a health sufferer, and it is the hardest to achieve.

So how can you overcome this? How can you accept your new life and all the troubles that
come with it enough to be able to go on living a happy and fulfilling life?
We learn about it.

The Grieving Stages

In this class, I felt the best way to show the different grieving stages was to list all the
different kinds I could find. Explaining each one in detail before we move on to discussing
how we can each go through different stages, even falling back in to stages we have move on
from In the past.

Here is my list of grieving stages with descriptions detailing what someone can feel when
they are in that stage and why.

Shock

Commonly considered the first of any grieving stage process, shock occurs when a sudden
surprising event impacts an individual’s life and throws it in to flux and disorganization.
When someone is in shock, it is incredibly difficult to think rationally and to organize one’s
life to immediately adapt to the change of circumstances. That is why Shock is considered
first before denial, as denial comes when disbelief of a situation takes hold.

Denial

When you're in denial about the loss, you try to convince yourself or others that the event
hasn't happened or isn't permanent. You know the facts, of course. If your spouse has died,
you might accept that it happened but then believe for a time that his death means nothing
to you. If your parents have divorced, you might try to get them back together even after
they've moved on to other relationships. Following a job loss, you might go back to work
thinking they didn't really mean it when they fired you.

Guilt & Regret

When the shock wears off, and the reality of the situation sets in, this is the stage where you
feel regret and guilt. Maybe the last conversation you had with that person was a terrible
one you wish you could take back. Perhaps your behaviour in response to the initial news
was terrible and you wish you could change it. Feeling responsible in some way for the loss
that has happened can be a part of the grieving process.

Anger

Anger is a typical reaction to loss. You may be angry with the person who left you, or you
may feel angry with yourself. You might express the anger by shouting at people through
sarcasm, or by showing irritation at everything from significant letdowns to minor problems.
This stage can also happen at any time, even after you go through a period of acceptance.
The benefit of the grief stages is that they help you deal with the loss and move on. Anger
can energize you to do just that.

Bargaining

At some point, you may find yourself bargaining, trying to get back what you lost. This part
of the stages of grief and the higher power help the person cope with the loss. People often
promise their God that they will live a better life if only they can take back what they lost. A
child may promise to pick up their toys and stop arguing with their siblings if their parents will get back together. Bargaining is a stage that sometimes brings up uncomfortable
discussions that go nowhere.

Loneliness

When feeling grief, we can feel that no one understands what we are going through, so we
begin to self-isolate from those who care for us. In this stage, you can become detached
from your regular routine, work, and social life as you just don’t see a point to getting out of
bed. This can lead to feeling alone when facing your grief and can develop into depression if
the person is left too long with their own negative thoughts.

Depression

Depression can present with any of the symptoms of clinical depression. You may feel sad
and cry often. You might notice changes in your appetite or sleep patterns. You might have
unexplained aches and pains. This stage can be too painful in a breakup in a relationship and
in the death of a loved one. If you're moving through these stages of grief, divorce can seem
like the end of your life, so it's natural to become depressed. It is a situational depression
that may soon pass naturally as you move toward acceptance.

Pain

Psychological pain from emotional trauma can have a physical impact on the body. When
your emotional pain is all consuming and you can’t cope with even the basic daily tasks, this
can lead to actual physical pain in the body. Chronic health conditions such as fibromyalgia
are believed to stem from psychological pain that was not addressed in a patient’s history
and is just one example of a physical response someone can have when in this stage,
especially if this emotional pain isn’t addressed.

Fear

Often considered the irrational fear of loss stage, this can be felt at any time before during
and after the stages of grief. Fear of loss can come when we worry about losing things,
people or even ourselves and is sometimes considered irrational since in life we tend to lose
those things anyway. Most times when we are fearful it is due to an unpleasant emotion
caused by the threat of danger, pain, or harm.

Acceptance

You understand what you lost and recognize how important that thing or person was to you.
You no longer feel angry about it, and you're finished with bargaining to get it back. You're
ready to start rebuilding your life without it.
These are just some of the examples you can find when researching the grieving stages.

Now we know what some of the grieving stages are, how do they apply to chronic health sufferers?
And what types of reactions can you expect from others who are processing their own grief
because of your new circumstances?

Fear of Loss

Before we move on to learning the tools we need to overcome grief and achieve acceptance
Regarding our chronic health, we must confront the hardest lesson in this course.

Fear

First, we must understand where fear comes from and why it is important to have the emotion of fear in life.

Fear is an instinctive reaction to danger, pain, or harm. It is an emotional trait every sentient
creature on this earth experiences and is vital to survival. Young children are taught fear in
many ways by their parents, so they have better chances of surviving to adulthood. Fear is a natural response to our environment and is vital to the continuation of any species on
this earth.

But when does this fear become unhealthy?
Sometimes the fear of loss or losing something can be even greater than the loss itself.
Living in a constant state of anxiety can very negatively impact your life and how you
approach situations you come across. When you’re constantly afraid of losing something,
you can miss important opportunities because you already believe you won’t succeed in
achieving it. You may never start that project, apply for that dream job, or even start a happy
relationship because you can already see all the ways it will fail, all the ways you will fail,
which can lead to feelings of despair, which fuels the fear you already feel. When we apply
this emotion to the grieving stages, we can better understand why some become stuck.
Unable to move through the stages they need to, to achieve a level of acceptance that can
help them move on with their life.

So how do we overcome fear?
Overcoming fear is complicated. Understanding fear and why we feel it is the first step. The next is one of the hardest things a person can do: facing it.
When facing fear, some will think of scenarios that are commonplace and relatable, like a
fear of flying, spiders, dangerous animals, heights, and so on. But these fears are not related
to loss in most cases. This is where we make the distinction between fear and phobia. Where
fear is an emotional response to the threat of harm, pain, or danger, a phobia is an extreme,
irrational fear of or aversion to something. And both must be treated differently when it
comes to the grieving stages.

A phobia is a type of anxiety disorder. When someone feels persistent fear of an object or
situation, this can have an even more concerning impact on their life and must be treated
seriously. Unlike the above phobias that are considered normal fear responses, a phobia can
develop before, during, and after the grieving stages.

Put simply, a person who has suffered grief in their life can develop an anxiety disorder and
phobia of losing that thing again.

This is where a therapist or psychologist can also help you to dig deeper to understand why
you feel this way, and to help equip you with the tools you need to overcome these fears.
Speaking to people you trust, such as family and friends, can also be a great way of coping
when these fears surface.

Do We Need Fear?
In the end, fear is a healthy and natural response to an ever-changing world, and there are many resources out there now to help you recognize and overcome these fears before they become serious clinical issues.

This is where breaking down our fears to better understand them can help. This begins with
a few very simple questions. Where did the fear come from? When did you first feel this
fear? What situation, object, or person triggered the fear? Why am I afraid? And how can I
face this fear safely to overcome it?

To face your fears is to have the courage to create positive change in your life, no matter
what barriers stand in your way. Whether that is a phobia or fear, both are important when
understanding the grieving stages. And both have their own unique impact.

But what about others’ fear of you? And as chronic health sufferers, how can we support
Others in coping with their fear of loss for us?

Now that we understand how we process fear and why we feel it, we can move on to
understanding how our loved ones’ fears are impacted by our circumstances.

Communicating Health
When talking about health, the stories I hear the most often will be along the lines of: ‘they
don’t understand me’ or ‘I am sick of repeating myself and them, not understanding’, and so
on. Health is complicated. Especially when you factor in that every health sufferer is unique
and will face similar but also different challenges with their own health. Just like we have
trouble relating to someone with a different career or lifestyle than ourselves, if you do not
live with a chronic illness, it can be harder to relate to someone who does. So, we need to
have some compassion and understanding as sufferers, that others may never understand
what we are going through. But those who care about us will try too.

Unsolicited Advice
As a health sufferer, we spend a lot of time explaining our health and circumstances to
others, especially our family and support networks. And there is no shortage of advice, tips,
and tricks to learn when it comes to managing health conditions. Even when the advice is
unsolicited and overly positive.

Something you will often hear from a chronic health sufferer is that they are inundated with
unsolicited advice from others about their health condition and how they should or
shouldn’t manage it.

‘If you just eat right and exercise…’, ‘If you just stay positive…’, ‘I heard of this thing someone did on the internet that cured them of…’ and so on.

For many of us chronic health sufferers, this line of thinking can get old very quickly, as we
are regularly inundated with information that isn’t often relevant to us. And sometimes, the
advice we receive can even be dangerous to our health, as it can provide a false hope for a
cure that doesn’t exist.

But why do we receive this advice in the first place?
On my journey of chronic illness, I have noticed that many who give me this advice genuinely
care about me and just want to help in any way they can. They were afraid for me, and this
was their way of trying to support me. By trying to help me fix a problem that is causing
harsh challenges in my life. And even though the advice was frustrating at times, they meant
well and just wanted what was best for me.

Once I realised this, I noticed the grieving stages displayed in others towards me and my new
set of circumstances. My family's concern, guilt, denial, and sorrow for my new life, and that
they didn’t want me to go through the harsh realities of chronic health alone. Or at all.
This is where I found myself consoling others about my health.
There are many challenges, fears, and obstacles to overcome when it comes to chronic
illness. One of the greatest is reassuring others who fear for us and our health. To support
those who support us on our journey with chronic illness is an experience most don’t
expect, as the focus is usually on the sufferer.

Something To Remember
One of the first external factors impacted by your chronic health is your social group and
family. This is due in part to the new challenges you will face with chronic health. If you lived
a highly active lifestyle and socialized often before your chronic health adversely affected
you, you may notice that not only do your physical and mental limits change, but your
priorities may shift too. The things you were interested in before may hold no interest to you
now, or you may be physically incapable of doing those activities anymore.

This can be one of the toughest stages of chronic illness, as you may feel you are losing a
part of who you are, a piece of your identity, and in turn, the life you once knew. And this can
be even more severely felt when your social friendships and relationships are tied to these
lifestyles and hobbies.

In Class Three, we will learn about the grieving stages again, but this time, we will talk about some tools and strategies we can use to overcome each stage.

The Toolkit

Now that we have a better understanding of the grief stages, what they are, and how we
respond to fear and the impact it has on a sufferer and their supporters, we can now build
our toolkit to equip ourselves with the knowledge we need to overcome grief.

If you're reading this, you have already begun taking control by educating yourself on what
the grief stages are and how they can impact a health sufferer’s life. Now we learn the tools
we need to push through the stages of grief, to recognise when we are feeling a certain stage, and how to overcome it without letting it take over. And finally, how to become who we are
now so we can be happy and go on to achieve what we want in life.

Let’s bring up some of those grieving stages again. But this time, let’s talk about strategies
that we can use to overcome each stage.

Shock & Numbness

Shock: When a surprising event impacts your life, throwing it in to flux and disorganization.

An important thing to remember here is that you need to give yourself time to process what
has happened before tackling any of the other emotions that follow this stage. Get all the
facts of the event that has happened and seek support now from the right people. Health
care professionals and trusted family and friends are invaluable in this stage, as they can
help you to more easily overcome the stages that will come once the shock subsides.

Fear & Denial

Denial: Not accepting the reality of the situation.

This is a tough one. This is the stage where you have to face your fear and examine the
reasons why you’re afraid of the situation that has happened. It’s in this stage that most
health sufferers get stuck. Not believing that their health issues are as serious as they are
being told or disbelieving them entirely. This is the stage where many can develop unhealthy
coping mechanisms such as alcohol and drug abuse to help them escape the situation they
are in. This is where we must really face our fear and express our emotions and frustrations
in a healthy way and the best way to do this is to talk about them.

Guilt & Regret

Guilt and Regret: Feeling responsible and punishing yourself for it.

Feeling like you’re the one to blame is a terrible emotion to go through. There are some
circumstances where this point is unfortunately true. Maybe you have made poor diet and
lifestyle decisions that lead to your current health conditions or your actions resulted in
someone else getting hurt or contracting an illness. Either way, this is the stage where a level
of acceptance must be achieved and where you must forgive yourself for decisions made in
the past. The best way to do this is to explore those feelings of guilt, accept that even if you
wanted to, you can no longer change what has happened and to learn from the experience.
We cannot change what has happened in the past, but we can definitely ensure it never
happens again in future.

Anger & Pain

Anger: feeling frustration towards your current circumstances.

Anger is a typical and normal response to grief. This is the stage where we seek to find blame
for our new circumstances which can result in the destruction of friendships and relationships through our inability to accept the new reality we live in, and that someone
must be responsible for it. In this stage it is important to take a deep breath and step away
from those who you are feeling anger towards. This can be friends and family, for not
understanding us and our new circumstances. It can also be towards health care
professionals when we feel we are not getting the level of attention and treatment we feel
we deserve. The way to handle this stage is very delicately. Take a time out to analyse why
you actually feel angry and where that anger is really coming from. In most cases it comes
from a place of frustration that you cannot change your new circumstances, and this is a
completely normal thing to feel. Take a deep breath, think it through, maybe even write it all
down to help articulate your thoughts. Then express your frustration in a constructive way
that allows others to see where you are really coming from.

Bargaining

Bargaining: ‘If I just do this, I can get back what I lost’

This stage is very common to health sufferers and is potentially one of the most harmful.
This stage, similar to denial, is when a chronic health sufferer begins to accept, they have a
problem but will think they have the ability to cure it or fix it if they just had this one thing.
This is where scams and false media come into play, praying on the vulnerable to exploit
their fears with false hope that their health can be fixed with a magic pill or special diet.
These false hopes come in many forms and to truly come through the bargaining stage, you
have to accept that Bargaining is a line of defence against the emotions of grief. It helps you
postpone the sadness, confusion, or hurt. There are no shortcuts with chronic illness, and
the best defence against these false hopes is knowledge. Always consult a healthcare
professional and seek a second opinion if you feel you are not receiving the right treatment
for you.

Loneliness & Despair

Loneliness: ‘No one understands me or what I am going through’

Whether you are a chronic health sufferer or not, everyone knows what loneliness feels like.
This emotion comes from a place of not being understood and happens frequently to health
sufferers. When trying to explain your circumstances to either people you know, strangers,
employers and even healthcare professionals, there will always be a feeling of
misunderstanding, as no one can truly understand how your health impacts you. This is the
stage where you will notice your social circles start to change. People you were close to
before begin to drift away as you can no longer have the relationship you had before and
this stage can very easily keep you in the grieving stages as you feel like you’re losing even
more because of your health. Loneliness can be the hardest stage to overcome, as you will
feel this constantly throughout your life and journey battling chronic illness. But this is also
one of the most important emotions you will ever overcome! It’s through understanding
why we feel lonely that we can shed away all the negativity that is impacting our lives. This is
where new friendships can begin, ones with people who accept you for who you are now
and understand you and your health. This is also the stage to try new things. A hobby you
always wanted to pursue, volunteering to help others, even changing your career to find
more fulfillment in life. This grieving stage will be the one you fight the most, and yet it has
the power to change your life in the most unexpected ways. By realigning what you really
want now and what your new interests are into healthy activities. This is a great time to find a support group with fellow sufferers like you that you can build new friendships with and
get support from. And you never know who you may be able to help just by sharing your
story.

Depression

Depression: When nothing matters anymore.

Everyone has felt depressed at some point in their life, either because something didn’t plan
out the way you wanted it too or you had something that you really valued and now you
never see yourself having that again. If left unchecked, these dark thoughts and emotions
can turn into a clinical condition that can impact a health sufferer in even more ways than
their existing health condition. There is a reason why I say physical health and mental health
go hand in hand and you will find it hard to find a chronic health sufferer that doesn’t have
both a mental health and a physical health condition. There are multiple causes of
depression and the most common way to treat it is to talk about it. This may seem too
simple, or you may feel that no one cares what you have to say. Ever had someone say to
you “just cheer up and you’ll feel much better”? Every person who has ever suffered a
health condition has had this advice given to them and it only leads to more feelings of frustration and loneliness. However, the best therapy for someone feeling depressed is
speaking to the right person about how they are feeling. This can be a trusted friend, family
member, partner or therapist that can help you to better understand why your feeling
depressed and help you to become more motivated to push through that feeling. This is a great time to start planning achievable goals for the future, either through exercise, hobbies, a holiday and so on. Give yourself something to look forward to when you’re feeling
depressed,

Acceptance

Above are the main topics of grieving, and we could literally spend hours trying to go
through each and everyone. But these are the main areas you will experience as a health
sufferer. Which finally leads us to our last and final grieving stage.

Acceptance.

But here is where I leave this question with you. Do we ever really achieve acceptance? Or
do we learn to just live with some semblance of acknowledgment of our health conditions in
everyday life?

This is your final test.
Knowing what you know now, as we near the final lesson of this course, what is your opinion
of acceptance?

In Class Four, we will discuss the last stage of grieving, Acceptance.

Acceptance

A popular belief about the grieving stages is that when you finally move through each stage
and achieve acceptance, you are finished and can move on with your life. That complete
acceptance brings complete peace. But often this stage is never complete. Instead, you
might feel sad during death anniversaries or angry when you feel current circumstances
would work out so much better if you just had that thing or person with you now. When you
accept the loss fully, you'll understand the stages of grief better.

The unfortunate truth about grieving is that we will never truly accept what we have lost.
we only learn how to live with it. Over time, the pain of that loss can fade, but it is always
there, and you can, at any time, slip back into the grieving stages when a loss in your life
happens again.

The most important thing to remember about grieving is that you can live with the loss, and
it can make you stronger. This is especially true when we apply the grief stages to chronic
health sufferers.

Your life doesn’t have to be defined by your health!

I’m an artist, writer, content creator, and music lover. I enjoy spending time with my family
and friends, watching movies, and venturing out for a drink and dance at a pub or club. I love
the quiet time, just listening to music and curling up in bed with a good book for days on
end! I love to eat chocolate and go for long walks in nature, as well as travelling to see new
places and cultures.

Having a chronic illness is a part of who I am. And because I have better knowledge and control of it now, I can go out and live life the way I want to.

This is what I want for you, too.

But to do this, you have to accept your chronic illness.

This is one of the greatest challenges we face as chronic health sufferers. But this acceptance is crucial to you rebuilding your life and finding fulfillment again.

Losing Who You Were To Become Who You Are Now

Luvyabye!

Sharnii Elliott

Free Downloadables

After many years of battling chronic illness and having to make constant adjustments for my health, I have learned that sometimes there just aren't enough resources out there to help people who struggle with their health, whatever form it takes.

After trial and error and some advice from others in my circumstances, I created these documents that have helped me manage my health, keep track of my treatment plan, and create goals for the future.

I even created a Health Library of Chronic Health Conditions where you can research and learn more about common illnesses!

Medical History Template

By far, the handiest tool I have ever created for myself, The Medical History Template is a valuable resource you can use to track your health conditions, medication and treatment plans.

It is even a document you can give to doctors so they can quickly get up to speed about your health history and why you are seeing them now.

I cannot recommend this document enough! Especially for those of us who have multiple health conditions and take lots of medications, it can easily be updated to adapt with you and your health.

Enjoy!

Medication Questionnaire

Sometimes when we are overwhelmed by a new diagnosis or treatment plan, we can forget to ask important questions that can help is in self monitoring and reporting how we are going with the medications we are given by doctors.

Here is a handy checklist that you can add to at any time to assist you in getting answers to important questions about your health and treatment plans.

To Do List

Seems silly to have a to do list on this page but one of the early mistakes a health sufferer will make is trying to maintain old routines with new illnesses.

It can be an incredible stressful and even painful transition process to incorporate illness in to our lives, so setting realistic and achievable goals is vitally important to supporting our mental health while treating physical health.

Who Am I Now?

When we journey through chronic illness and adjust to the new reality, we can lose a sense of who we are and what we want for the future.

With illness disrupting our lives, we are sometimes unable to achieve the old goals we had set out to do, while new ones might come forth as priorities shift.

This change can herald a lot of confusion, and that is why I created the Who Am I Now? document.

This can help you do a little reflection, realigning your life and values to what you really want to do.

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