Those of us who live with chronic pain are all too familiar with the five stages of grief described by Elisabeth Kubler-Ross in her groundbreaking work “On Death and Dying.” The loved one we grieve for, however, is not another person; rather it is a part of ourselves. We suffer our own losses as chronic pain robs us of the life we once knew. Many of us have been forced to abandon careers, lost friendships, and even ended marriages and given up homes as pain forces us to modify our activities and changes our relationships.
Not everyone goes through every stage of grief. Some people spend little time on a particular stage and get stuck on another stage. Many of us make it through after a difficult journey, only to fall back to a previous stage after a setback. We learn to follow where life leads us.
The first stage: denial
Our first response to living with chronic pain is to deny it. Whether it’s been six weeks or six years, we may deny that the pain will continue. “This isn’t happening to me” is a common thought. The emotions become frozen, and we may just go through the motions of living. It is difficult to cope with the pain because we do not acknowledge that it is an ongoing problem.
Like all the stages, this one can take a long time to get through. Denial can help cushion the emotions from the shock of hearing our diagnosis until we are better equipped to deal with it. Repeating the diagnosis (or the symptoms), studying the facts of the disease or condition, and talking with others with similar problems may help us gradually come to the realization that the pain is a part of our life.
The second stage: anger
Why did this have to happen to me? We may feel angry at the injustice of being the one with pain. Anger may be directed at others who do not have chronic pain or who do not understand its effects on us. If the pain is the result of an accident, we may be angry at the cause of the incident or the person who was responsible. Anger and envy can erupt as we watch others do the things we used to be able to do. We become frustrated that the pain continues month after month.
Anger is normal and good in that it helps push us through our journey to self-realization. What we do with the anger, however, is the key to our emotional health. Venting our anger by attacking others will only serve to damage relationships that may be vital to us. If we try to suppress the anger, we will end up damaging ourselves. We need to let the anger out by being honest about our feelings. Sharing thoughts and feelings with a support group or a sympathetic listener is the best way to get through this stage.
The third stage: bargaining
The “if onlys” have a way of taking over life if we let them. If only I didn’t have pain, I would …. If only there was a cure, I could … (fill in the blanks). Bargaining with God, with ourselves, and with our doctors is another normal stop along the way to acceptance. The only problem is that it doesn’t work. At some point, if we are to continue, we have to put the “if onlys” aside and acknowledge what is rather than what could have been.
Depression: the fourth stage
Depression, sadness, overwhelming feelings of hopelessness, frustration, bitterness, and self-pity have a way of creeping into our lives. Almost everyone who lives with chronic pain experiences these feelings. Medical intervention may be needed to overcome depression, especially when it persists for more than two weeks. Medication and psychotherapy can help a depressed person get back on track. For those with less severe depression, other techniques—such as crying and talking—may help chase the blues away. Crying is a tool the body uses to allow us to heal our bruised and battered emotions. Talking about our losses to understanding friends, loved ones, or spiritual advisers is another way of coping and helping ourselves.
Acceptance: the fifth stage
Finally comes acceptance. There is a fine line between giving up hope and accepting our condition. We don’t have to give up on our vision of a cure someday. But we do accept that our life, right now, involves pain and limitations. Once we accept that, we can get on with our lives and turn our efforts toward achieving our own personal goals. Says Nancy, a member of our chronic pain support group, “Lupus lives with me; I don’t live with lupus.” She accepts the limitations that lupus has put on her ability to do certain things, but she also does whatever she can to make the most of the life she does have. That includes volunteering for several organizations and putting on makeup to hide the pain on her worst days.
When we finally accept that the pain is not going away, we can plan strategies to make the most or our lives.
Sharon Michaud, a licensed social worker and a trained hospice volunteer, offers the following coping skills to help on the journey toward acceptance:
- Find a good listener, not someone who will try to fix things.
- Attend a support group. Other people who live with chronic pain will understand what you’re going through and can offer support, a sympathetic ear, and sound advice.
- This is one of the tools the body uses to heal.
- Learn to delegate. Tell people how they can help and what you need. Loved ones can’t read your mind, so if you want them to do something, tell them.
- Don’t suppress anger. Talk about it, explore it, and dissect it to find out what’s bothering you.
- Explore your spiritual side. Hand over your frustrations, sadness, and problems to a higher power.
- Practice meditation with or without music to release your mind and body from its preoccupation with pain.
- Don’t compare yourself with others. You are traveling your own journey; no one else can determine your pace or set your goals.
- Humor is a wonderful distraction and mood-lifter.
By Susan Dudley Gold. This article is based on a talk by Sharon Michaud, LSW, in 2007 to the Chronic Pain Support Group and on discussions by group members on the topic. The group, now facilitated by Ernest Merritt III, has been meeting since 1993 and now operates virtually via Zoom. FMI: www.painsupportgroup.org.