For those of us with chronic Lyme disease, pain often determines not only the process of discovery but the course of our recovery.For some the discovery of Lyme disease comes on gradually with perplexing fatigue and hints of unexplained depression, fatigue and pain – sometimes stabbing and excruciating, and other times a steady throbbing. As a vibrant and accomplished life unravels and becomes tarnished with illness the search for answers becomes imperative, and depending on a person’s circumstances, this search can be disastrous.
Throughout the journey demanded by Lyme disease there is the ever-present pain.
According to a psychologist Dr. Jennifer Martin, there are seven psychological stages of pain. You may be familiar with the Kubler-Ross five stages of grief or loss. Well, this is Dr. Martin’s list of the seven stages of dealing with pain (especially chronic pain) that she developed during her years of counseling people with chronic pain:
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 pain and illness because if they are in denial about their condition, 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.”
2. 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 and pain go away — or anything that could give us some semblance of the life we once had.
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 them anymore. Guilt is common when bargaining.
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 change the diagnosis, anger sets in.
Anger is a necessary stage of the healing process. Feelings of anger may seem endless, but it is important to feel them. The more you truly feel anger, the more it will begin to subside and the more you will heal. Your anger has no limits and it may extend to your doctors, family, friends and loved ones.
Anger is often felt later on when the illness and pain progresses, or holds us back from doing the things we would like.
Example: “This isn’t fair! I didn’t do anything to deserve this!” or “Just give me something that will make me feel better!”
4. Anxiety and 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 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 pain or illness may also bring up feelings of anxiety; anxiety about what the future holds, anxiety about not being able to live up to expectations, 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?”
5. Loss of Self and Confusion
Having chronic pain or illness 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 in life is now. This stage may occur at the same time as anxiety and 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?”
6. 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 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. 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 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 permanent. We will never like this reality and it may never be OK, but eventually we accept it and 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.”
It’s important to remember that 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. I hope that these stages give some comfort to those who are experiencing chronic conditions.
As a long-term sufferer of chronic Lyme I can add an eighth step.
Acceptance is important for dealing with the reality of a given situation , but there is always hope for recovery. While we suffer with the pain of Lyme symptoms it is important to journal the waxing and waning of specifics. Then you can see the progress over years of treatment and rejoice as you climb out of the pit of despair.
Don’t ever give up .
Note: Original article published in Pain News Network