Chronic pain often makes people mad. It’s not fair. You don’t deserve it. Chronic suffering gets in the way of everything we do and no one else can really ever understand what we’re feeling. It just never ends.
Having chronic pain creates a void and loss in our lives. In some ways it’s similar to Elizabeth Kubler- Ross’s “Five Stages of Grief.” But the five stages of grief were designed for the death of a loved one, not to help the emotions and loss people feel when learning to live with the impact daily pain causes.
So here’s our own:
1. Denial– Here we’re in a state of shock, refusing to accept the diagnosis, often lashing out at the messenger delivering the news. Were overwhelmed, wondering how our life is going to change and how we are going to live with those changes. Denial and shock initially help us to cope and survive. But this stage can be dangerous if it’s used to deny a condition that requires intervention. It may keep someone from taking the necessary steps to get the treatment they need or palliative intervention that may improve the situation. For example, some conditions like a severely compressed vertebra can improve with early intervention (see post on Vertebroplasty) and prevent future ones with long term intervention (see post on osteoporosis). Denial may make sense initially, but it never works in the long run for anything.
2. Bargaining– This is the stage where we want life to be what it once was. We can become fixated on anything that could make our pain go away – or anything that could give us some semblance of the life we once had. This is where less then reputable online or health practitioners promising total relief or cures can take advantage. If there was a pill or treatment that would take away all my pain, help me to sleep through the night, or get back to a more physically active life, I promise I’d share it with my patients. Here we may also find fault with ourselves and what we think we could have done differently. We may even bargain with the pain promising to do better if it resolves. Guilt is often a big factor. After one of my surgeries a family member told me it was all my fault. “You must have done something to rupture another disc, other people don’t have this problem.” As though I wanted another surgery or increased pain!
3. Anger– After we conclude that bargaining is not going to change the prognosis, anger often sets in. Anger is a normal and necessary stage of the healing process and often occurs when we start to see and feel how the chronic pain impacts our lives. Feelings of anger may seem endless, but it is important to feel them. The more you truly feel the anger, the more it will begin to subside and the more you will heal. This is imperative, without moving on it will extend to your doctors, family, friends and loved ones, adding more anguish to your life. Too often, providers are attacked by patients-“This isn’t fair! I didn’t do anything to deserve this!” or “Just give me something that will make me feel better!” Of course you’re right, but anger won’t encourage a positive response in anyone.
4. 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 “situational” depression is not a sign of mental illness. It is the appropriate response to a loss or a life-altering situation. Depression after a loss is too often seen as unnatural or something that needs to be snapped out of. Well-meaning friends and family can actually worsen this stage by implying we have that control. Being diagnosed and experiencing chronic pain is a loss – a loss of the life you once had. It 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 how it will impact your family and work, anxiety about social situations, and anxiety about medical bills. Questions like “how am I going to take care of myself, work, pay the bills?” abound. You’re not alone. We all deal with these questions. It is scary. I remember needing my fourth back surgery when my daughter was 3 and I was going through a divorce. Initially I put it off thinking I was doing her and my office a service. In the end I realized if I didn’t take care of myself I couldn’t be there for anyone.
5. Loss of Self – Having chronic pain may mean giving up some key aspect of what made us who we were. Wondering what life will be like now- will we be as physically active, social, still work- is normal. It’s like waking up one day and not recognizing who you are. It feels overwhelming trying to reconfigure your life and how you fit into the scheme of things like family, job, and friends. “What happens now?” swirls all around. Just know that with time you’ll find a place that works. One that replaces the old and makes sense for the new you. It doesn’t happen overnight. Take it day by day. Eventually the days will merge and you’ll wake up feeling confident in the here and now.
6. Changing Body image– For many, chronic pain also impacts us physically, causing unsightly scars or the need for assistive devices to function. After my first cervical fusion I was embarrassed to wear anything but turtle neck sweaters. Since my surgery was during May in Tucson, you can image my discomfort and looking like an oddity in 100 degree weather! It took awhile to realize no one else cared and I was actually drawing attention to the very thing I wanted to detract from. Using a cane or occasional wheelchair is still irksome and a work in progress.
7. Shifting Relationships– Remember, you’re not the only one adapting . Your loss and changes affect everyone around you. In many ways they’ll be going through the same stages of grief, just in different ways. Be mindful of their fears, as well as worries on how to help and not impede your progress. Talk openly and honestly about how things will change and still work for everyone. After I separated from her father, my daughter was clingy, constantly demanding to be held. At this point picking up a 3 year-old wasn’t an option for my back, but guilt wracked my sole every time she cried and threw her hands in the air. Finally I learned to grab a chair and let her crawl into my lap for a much needed hug. She had to adapt at a young age to a Mom with limitations. But she did. Eventually it just became a normal part of her life. If the situation warrants it, get help if necessary.
8. Re-evaluation of Life– Having chronic pain often means giving up a lot. We are forced to re-evaluate our goals and future. Who we are as a husband, wife, mother, father, sibling, child, boss, co- worker, and friend. 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. Prioritizing is a crucial first step in accepting our condition. Understanding that jogging may no longer be an option but biking, walking or stretching can be. Pick your battles and choose what needs to be done each day with your limited resources. Just remember to keep yourself in the mix. Each day, take time for you. Whether it’s a long hot bath, good book or time with friends.
9. Acceptance– Acceptance is often confused with the idea of being “OK” with what has happened. This is not true. Most of us are never OK with having to live with chronic pain for the rest of our lives. Instead it’s about accepting the reality of our situation and recognizing that this new reality is permanent. Nobody likes this new place. Most fight tooth and nail to resolve it but eventually we accept it, learn to live with it and move on with our new norm. We make the adaptations and alterations necessary and find new things that bring us joy. We refuse to let this define us. I am not chronic pain, I am a person who lives with chronic pain.
We may pass through, revert back or stay in any of these stage all our lives. One day more accepting than others. But understanding there is an end where life improves, holds value and purpose and where we can move forward is often all we have to cling to through the bad days.