Difficult emotions and a degree of stress are inherent in any relationship: husband-wife, parent-child, domestic partners, LGBTQ+ relationships, boyfriend-girlfriend, employee-boss. This is part of life. Some of us are good at handling difficult emotions, some of us struggle, some of us simply pretend they don’t exist. Adding a loved one’s chronic pain to the relationship magnifies the difficulty and intensifies the stress. But one thing is clear: failing to deal with difficult emotions can lead to a whole range of negative consequences, which can be loosely categorized as “caregiver burnout.”
Burnout of employees, teachers, health care professionals, and even famous athletes has recently become a hot topic in the media. For example, tennis player Naomi Osaka and gymnast Simone Biles have publicly shared their stories.
Understanding burnout: A recognized ailment, with widespread repercussions
Burnout now has its own specialized language: depressive symptoms, compassion fatigue, vicarious trauma, secondary traumatic stress, and secondary victimization. In fact, according to the World Health Organization’s International Disease Classification (ICD-11), burnout is now categorized as a “syndrome” that results from “chronic workplace stress that has not been successfully managed.” This definition certainly applies not only to employees, but also to us as caregivers. Yet each of us are different; each of us comes with our own backstory and our own baggage.
Burnout has been defined as “a state of mental, emotional, and physical exhaustion” but this definition may seem overly grandiose for what is a perfectly natural phenomenon. As caregivers, we can become stressed out, exhausted, and overwhelmed by our role. We can experience any number of symptoms, including anxiety, excessive stress, fatigue, insomnia, sadness, anger, irritability, changes in appetite, social isolation, guilt, helplessness, depression, and detachment—all while failing to realize that this is a common syndrome. This is the world of the caregiver. No one trained us for this role. There is no job description.
The U.S. Pain Foundation recently conducted a nationwide survey to better understand the public health crisis of chronic pain. A total of 2,378 individuals responded, 3% of whom were caregivers. Less than 40% of caregiver respondents felt confident in helping the person they care for manage their pain safely, and nearly all—94%—face barriers in helping care for the person with pain.
Caregivers themselves are also struggling. Approximately 54% said they either do not have a good support system in place or keep everything to themselves. A staggering majority reported feeling helplessness (96%) or feeling overwhelmed (80%); roughly half to two-thirds also reported feeling exhausted, fearful, stressed due to financial concerns, and guilty.
Building resilience: The importance of a self-care practice
But the world of the caregiver need not be all doom and gloom. There may be no magic bullet, but there is plenty we can do to make our lives easier and relieve stress. The first step is to recognize the problem, and the second step is to deal with it. Winston Churchill famously said: “We are still masters of our fate. We still are captains of our souls.” Less famously, I say: Don’t let your loved one’s chronic pain turn into your chronic stress.
As caregivers, we need a strategy to deal with our own emotional stress. No strategy is perfect, so we must choose the strategy that works for us. It can be multiple strategies, but lack of action is not an option. We must take care of ourselves if we want to take care of our loved ones.
What works for you? There are countless programs, roadmaps, workshops, webinars, books, and TED Talks. What do you choose? My tip is look for solutions that you like doing. Do you like meditation, yoga, and mindfulness, or do you prefer rock climbing, hiking, and biking? Do you prefer to read books, listen to podcasts, or binge-watch Netflix? Choose whatever will help you lower your stress and strengthen your resilience.
U.S. Pain’s recent survey asked what activities caregivers do to make sure they take care of themselves. The most common responses included: participating in hobbies such as gardening or crossword puzzles (56%), exercise/sports (53%), proper nutrition (39%), socializing (38%), and spirituality (35%).
Resilience is a much-used term, and it has different meanings for soldiers, psychiatrists, and philosophers. For our purpose as caregivers, resilience includes self-care and has four main components: regular physical activity, healthy eating, active relaxation, and adequate sleep. It may sound obvious, but caregiving is highly demanding work, so as caregivers we need time to recuperate. This is not a luxury: it is a necessity. As they say, a car won’t run if there is no gas in the tank.
In addition to strengthening our resilience, it is important to recognize our limits and do a reality check of our personal situation. Most of us do not possess superpowers, so we must acknowledge and accept our potential for caregiver burnout. We must accept that our lives have changed, adapt to these changes, and set realistic, achievable goals. It may be uncomfortable, but we should accept that we may need help. Where possible, we should turn to others to handle some tasks. When possible, we should find someone we trust, such as a friend, relative, co-worker, or neighbor, to discuss how we feel. We can’t do it all on our own.
Finding community: Gaining comfort from others who understand
Finally, the best advice may be to seek support from our peers—other caregivers. The U.S. Pain Foundation hosts a free monthly support group for caregivers or care partners of individuals living with chronic pain. Facilitated by trained leaders, one of whom is me, participants share information about their experiences and as well as personal tips on how to deal with the toughest issues, spanning the whole range from managing doctors’ visits, to coping with isolation, to suicidal ideation. These support groups provide a haven for sharing feelings, learning to adjust to our changed lives, and discussing coping mechanisms. Each month, a different topic is chosen, and everyone attending has the opportunity to talk. Our mission is to provide a clear structure and purpose… and isn’t that precisely what caregivers need?
-Malcolm Herman, Director NCCPPP, Co-facilitator Caregivers/Care Partners Support Group, U.S. Pain Foundation