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!
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. Guilt is often bargaining’s companion. 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.”
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 of the healing process. Feelings of anger may seem endless, but it is important to feel it. The more you truly feel it, the more it will begin to subside and the more you will heal. 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!” 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. It is the appropriate response to a loss or 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, whereas 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 we loved, 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 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. 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”.