A little over a year
ago, I wrote a post about the five stages of grief developed by Elizabeth
Kubler-Ross and how they could be applied to patients with chronic
conditions. Since that time I have
thought a lot about the feelings and reactions I had when I was diagnosed with
ulcerative colitis and the feelings and reactions I have had since my
diagnosis. I have also paid close
attention to what my patients have been through and are currently going through
and I decided that while the stages of grief are accurate, there seemed to be
some things missing for those of us with chronic conditions. As a result, I have added/changed some
stages. Remember, these stages are not
linear. While some people begin in the
denial stage, move through each stage and end with acceptance, many people jump
back and forth throughout the stages.
Please let me know what you think!
Denial and Disbelief
In this stage, we are in a state
of shock and refusal. 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” or “The doctor is wrong, I
don’t have diabetes.”
Pleading,
Bargaining, Desperation
This is the stage where we want more than anything
for life to be what it once was. We become fixed on anything that could make
our illness/pain go away or anything that could give us some semblance of the
life we once had. We become desperate
just to be “normal” again. Guilt is common
when bargaining. We may 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”.
or “If you make the pain go away I promise I’ll be a better person.”
Anger
After we conclude that our pleading and bargaining
is not going to result in a change in diagnosis, anger sets in. It is also an emotion that is often felt
later on when the illness/pain progresses or holds us back from doing the
things we would like. Anger is a
necessary stage in the process of healing. Feelings of anger may seem never ending,
but it is important to feel the anger. The more you truly feel it, the more it
will begin to subside and the more you will heal. Your anger has no restrictions and it may
extend not only to your friends, doctors, other medical professionals, your
family, yourself and your loved ones.
Example: “This isn’t fair! I didn’t do anything to deserve this!” or “Just
give me something that will make me feel better!”
Anxiety
and/or Depression
Feelings of emptiness and grief appear at a very
deep level. 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 or
that there is something “wrong” with you.
It is the appropriate response to a life-altering situation. We may withdraw from life and may wonder if
there is any point in going on.
Depression after a loss is too often seen as unnatural or something that
needs to be snapped out of. Being
diagnosed with a chronic illness or experiencing chronic pain is a loss – a
loss of the life you once had.
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”. or “I’m going
to be in debt forever. How am I ever
going to pay off these medical bills?”
Loss of
Self/Confusion
Having a chronic illness or chronic pain may mean
giving up some key aspect of what made us who we were. It may mean an inability to be physically
active like we once were. It may mean
not being able to be as sociable as we would like or it may even mean giving up
a career. You may wake up one day and
not recognize the person you are now.
You may question what your purpose is now, while before your diagnosis
it was so clear. This stage may occur at
the same time as Anxiety and/or Depression or it may be separate.
Example:
“I don’t even recognize myself anymore.” or “My career was my identity. Who am I without that?”
Re-evaluation
of life, roles and goals
Having a chronic condition often means giving up a
lot. We are forced to re-evaluate our
goals and futures. We are forced to
re-evaluate who we are as a husband, wife, mother, father, sibling or
friend. While we once had a successful
career that gave us a purpose, we may find ourselves beginning to question what
we can do for work in the future and how we can contribute to our
families. While we were once able to do
it all, we are now re-evaluating what absolutely has to get done during our
days and how we can accomplish these goals while still remaining in a positive
mood at the end of the day. Re-evaluating
your life, roles and goals is a crucial first step in accepting your condition.
Example:
“I may not be able to be a nurse anymore but maybe I could teach classes a
couple times per week.” or “I can’t be as physically active with my husband anymore
so what else can I do to show him I love him?
Acceptance
Acceptance is often confused with the idea of being
“OK” with what has happened. This is not true.
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 and it may never be OK, but
eventually we accept it and we learn to live life with it. It is the new norm
with which we must learn to live and we must go on despite it. We must make
adaptations and alterations to our lives. We must find new things that bring us
joy and hope.
Example: “I’m not going to let this define me. I will learn to deal with
this the best I can”.
(c) 2015 Jennifer Martin, Psy.D
