The first step in tackling any problem is awareness. The concept of total pain is helpful to increase our awareness of the many ways a serious neurologic illness can cause suffering. Total pain refers to the idea that a serious illness causes suffering through physical, emotional, social, spiritual and practical challenges. This in turn helps both to expand our vision of where suffering arises and to focus our efforts to improve quality of life. As a starting point it can be a relief just to name your problems, to know that other people have faced similar struggles, to have encouragement to explore these concerns, and to learn that others have found ways to address these issues.
To use an example from Parkinson’s disease, many people find the change in ability to do activities they used to find effortless distressing. This change may be associated with grief, worries about the future, and social isolation. By simply naming these issues, they transform from nagging and invisible sources of suffering to concrete problems that can be talked about, shared, and challenged.
The second step in applying the palliative philosophy is taking an inventory of your values (e.g. family, church, nature, social justice), your strengths (e.g. creative, loyal, kindness, courage), and what’s most important in your life (e.g. spending time with your spouse, travel, contribute to local community center) to shape your care plans and priorities moving forward. Staying connected to who you are and what’s most important in your life in the face of a life-changing illness may take some adaptation but for most people it’s worth it. For example, you may not be able to flyfish the way you used to but perhaps you can still enjoy your favorite fishing spot or teaching a child about the art of flyfishing. Making time to take a step back to look at the big picture can make a very real difference in how you cope with your illness and the quality of decisions that you make.
The third step in applying this philosophy is determining whether you can address it through cure, control, coping or compassion. Cures include a true cure of your illness (e.g. elimination of seizures after epilepsy surgery) or a complete treatment of a symptom (e.g. elimination of constipation through dietary changes). When cure is not possible, containment, or partial treatments, might be. As an example, people with chronic low back pain might not be able to eliminate their pain but may be able to control it through physical therapy stretches and taking pain medications a few times a week to allow participation in important activities.
Coping refers to strategies to live with symptoms or situations that cannot be changed. Coping strategies could include finding a support group, meditation, prayer or focusing on activities that you can still do that bring you joy. Compassion literally means to suffer with and can be expressed through acts of kindness, understanding, and acceptance. You can seek compassion by sharing your struggles with a trusted partner, friend, family member, religious leader, or therapist. You can also practice self-compassion by not judging yourself harshly, practicing self-kindness, and being aware that you are neither alone nor at fault for having a serious illness.