By Mara Baer

As someone who has lived with chronic pain for ten years, I worry about my health and future. I also worry about my ability to be fully present for my kids and spouse, and the load that he carries in our family life.

When my pain first became chronic, my husband’s expanded role became critical. He did more driving, more cooking, and more laundry. There was always more for him to do. When my pain became so persistent that it impacted my mental health, his responsibilities grew even more.

Fifty million people in America live with chronic pain. We are five times more likely to experience depression and anxiety, and our risk of suicide is twice as high as people without pain. Isolation, elevated stress, and loneliness are also common. Because the healthcare system does not typically address the biopsychosocial nature of pain – the biological, psychological and social factors behind it -- these problems persist and have deep impacts on our relationships and caregivers.

When I was at my darkest times with chronic pain, I felt helpless. Feeling helpless lead to acting helpless, which added to the caregiving burdens of my spouse. Many days I could not get myself out of bed, as the pain and my sadness about it were too great. I avoided family and social activities, and doing chores around the house.

I thought I was allowing my body the rest it needed, but I’ve since learned that avoiding movement and isolating oneself can exacerbate pain, and deepen depression and anxiety. This created a vicious cycle, where lack of activity leads to more pain and worsens mental health.  

My husband watched as I declined and kept picking up the pieces. We spent years like this, but we didn't have to. I now have five key strategies that can help caregivers and their loved ones:

1. 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, as well as social and emotional issues. "The Pain Management Workbook" by Rachel Zoffness provides an excellent tutorial on the biopsychosocial aspects of pain and is a useful tool for caregivers and those living with pain. As caregivers learn more about the multi-faceted nature of pain, it becomes easier find ways to improve pain care.

2. Explore pain reprocessing and other therapies: In "The Way Out" by Alan Gordon, readers can learn about the neuroscience of chronic pain and how Pain Reprocessing Therapy (PRT) can teach the brain to “unlearn” chronic pain. Several pain therapy programs are grounded in this model, which has been found to provide significant pain relief. Caregivers should also evaluate other therapies that can help manage pain, including Cognitive Behavioral Therapy and Acceptance Commitment Therapy.

3. Evaluate healthcare stigma: People living with chronic pain often face stigma in the healthcare system. This impacts their access to care and mental health. Caregivers should evaluate whether stigma is occurring, which may result in the undertreatment of pain by providers and skepticism about patient suffering.

4. Assess your own pain and mental health: Like other caregivers, chronic pain caregivers can experience stress, isolation and burnout. That burden is often correlated with a patient’s pain, anxiety, depression, and lower self-efficacy. Over half of caregivers’ struggle with their own pain, which impacts their mental health and ability to serve in the caregiving role. Self-evaluation is important for caregivers to assess their own medical and mental health, and to seek support when needed.

5. Join a support group: Chronic pain is isolating, not only for people living with pain but also their caregivers. Connecting with others who understand these challenges can be incredibly healing and supportive. There are many support groups online. The U.S. Pain Foundation hosts a regular free support group for 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. After learning that nearly all chronic pain conditions have a psychological component, I sought mental health support, coaching and counseling. This helped me see that the way I coped with pain would never work, and that moving my body, avoiding isolation and acknowledging my emotions would help me feel better and engage more fully in family life.

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.

Mara Baer has lived with Neurogenic Thoracic Outlet Syndrome for over 10 years. She is a writer, speaker, and health policy consultant offering services through her women-owned small business, AgoHealth. Mara is a member of the National Pain Advocacy Center’s Science and Policy Council and recently launched a newsletter called Chronic Pain Chats.