As someone who has lived with chronic pain for ten years I worry. I worry about my health and future, I worry about my ability to be fully present for my kids, and I worry about my spouse and the load he carries. When my pain first became chronic his elevated role in our family became critical. He did more driving, more cooking, more laundry. More, more, more. When my pain became so persistent that it impacted my mental health with depression and anxiety setting in, his responsibilities for daily activities were only part of the challenge he faced.
Fifty million people in America live with chronic pain, pain that lasts more than three months. These individuals are five times more likely to experience depression and anxiety than those without pain and are at double the risk of suicide. Isolation, elevated stress, and loneliness are also common for people living with chronic pain and because the medical system does not regularly address the biopsychosocial nature of pain, these problems persist and have deep impacts on relationships and caregivers.
When I was at my darkest times with chronic pain, I felt helpless. Feeling helpless can lead to acting helpless which added caregiver burdens to my spouse. Many days I could not get myself out of bed as I felt the pain and my sadness about it was too great. I participated in limited activities like tending to my clients through my health care consulting practice and avoided family and social activities as well as activities that contributed to our home. In this avoidance, I thought I was allowing my body the rest it needed but I’ve since learned that avoiding movement and isolating oneself can further exacerbate chronic pain and deepen depression and anxiety. This creates a vicious cycle, where my lack of activity and worsening mental health exacerbated my pain and my pain aided my deteriorating mental health.
My husband watched as I declined, and he kept picking up the pieces. We spent years like this, but we didn’t have to. Four key strategies that can help caregivers and their loved ones include:
- Learn about the biopsychosocial nature of pain. The complex nature of pain involves many factors including the brain’s capacity to become hardwired to pain, and social and emotional issues. The Pain Management Workbook by Dr. Rachel Zoffness provides an excellent tutorial on the biopsychosocial aspects of pain and is a useful tool for caregivers and those living with chronic pain, helping to unveil pain’s complexities. As caregivers learn about the multi-faceted nature of pain, it will become easier to support their loved ones with tactics that address all aspects of pain care.
- Explore pain reprocessing and other therapies. In The Way Out by Alan Gordon, LCSW, readers can learn about the neuroscience of chronic pain and how Pain Reprocessing Therapy (PRT) is a proven technique to teach the brain to unlearn chronic pain. Several pain coaching and therapy programs are grounded in this model which has been found to provide significant relief to many chronic pain patients. Caregivers should also evaluate other therapies that have been proven to help manage chronic pain include Cognitive Behavioral Therapy (CBT) and Acceptance Commitment Therapy (ACT).
- Evaluate health care system stigma. People living with chronic pain experience stigma in their health care regularly. This impacts the patient’s access to adequate care and their perspectives of their care and overall mental health. Caregivers should evaluate whether stigma in care is occurring which may be shown by underassessment or underestimation of pain by providers or skepticism or even dismissal of patient suffering. Caregivers can seek out specialists who focus on the biopsychosocial model of pain care and advocate for such care to avoid stigma.
- Assess your own pain and mental health. Like all types of caregivers, chronic pain caregivers can experience stress, isolation and burnout. Chronic pain caregiver burden is correlated with patient pain intensity, anxiety, depression, and lower self-efficacy. Also more than half of caregivers’ struggle with their own pain which will impact caregiver mental health and ability to serve in the caregiving role. Self-evaluation is important, and caregivers should consider assessing their own care needs and seek out appropriate health and mental health supports.
- Join a support group. The hidden nature of chronic pain can be isolating for those living in pain but also for those that support them. Connecting with others that understand can be incredibly healing and supportive. The U.S. Pain Foundation hosts a regular free support group for chronic pain caregivers providing opportunities to share challenges and coping strategies.
When I finally became aware of the evidence around the biopsychosocial nature of pain it was a turning point for me and my spouse. In learning that nearly all chronic pain has a psychological component, I was able to seek out mental health supports including chronic pain coaching and pain counseling. This helped me see that the way I used to handle my pain would never work and moving my body, avoiding isolation, and acknowledging my emotions would help me feel better and allow me to engage more fully in my family life and surroundings. There are times my husband may still carry a heavier load, especially when I am having a pain flare, but his caregiving responsibilities are more manageable now and I am certainly more present in our family and relationship.
Image: ID 321890739 | Caregiver © Yuri Arcurs | Dreamstime.com
Published with permission by Pain News Network
Mara Baer
Mara Baer is a writer, speaker, and health policy consultant offering services through her women-owned small business, AgoHealth, LLC. She serves as a member of the National Pain Advocacy Center’s Science and Policy Council and has lived with Neurogenic Thoracic Outlet Syndrome or nTOS for over 10 years. She has also recently launched a chronic pain newsletter called Chronic Pain Chats.
