The Unseen Victims of Chronic Pain: The Emotional Toll of Caregiving

By Mark Odlum

Mental health is often inextricably linked to the chronic pain experience. One aspect of chronic pain that is sometimes overlooked is the mental health of caregivers or care partners. Like the patients they care for, care partners are also faced with mental-health challenges: many share their feelings of frustration, hopelessness, and depression at navigating a broken health care system, compounded by limited sleep and, often, difficulty getting time for themselves.

Organizations such as the Diverse Elders Coalition are determined to help care partners with these social and medical challenges.

“In the midst of the pandemic, we did some research, and the top two challenges that were identified by caregivers in our communities were mental health and social isolation,” says Didier Trinh, the director of policy and advocacy at the Diverse Elders Coalition. “More than half of the caregivers we surveyed selected ‘Taking care of myself ’ as their biggest concern, and almost half of our diverse caregivers wanted more emotional support, which just underscores the mental health strain and social isolation that was brought on during COVID.”

Unfortunately, he notes, this can lead to a domino effect, especially when individuals living with chronic pain or other health issues, and those caring for them, face disparities.

“Overall, there is a lack of culturally responsive resources and services for diverse caregivers,” Trinh shares. “This has the ripple effect of hindering their mental health, which then affects their physical health, and then in turn can affect the well-being of the people they’re providing care for.”

So, where can care partners turn? There are avenues for support, according to Keisha Lewis, a health program liaison with the National Caucus and Center on Black Aging.

“I think relying on groups…to talk about the challenges we’re dealing with, and encouraging our caregivers to know that it’s OK if you’re stressed out or if you’re dealing with depression—this reinforces that your own mental health is really important,” Lewis says.

Self-identify as a caregiver or care partner

It can take some caregivers or care partners a while to realize and accept that the term applies to them, but it’s important that they do, as there may be untapped formal support services at their disposal. While this may seem simple, many people don’t even realize they’ve assumed this specific role, especially in diverse communities where there are other cultural dynamics at play, Trinh says. And it’s not always a spouse: care partners can be friends, family or “chosen family,” and community members who feel culturally obliged to help.

“More help is great, yet it’s also unpaid and can go unacknowledged,” Trinh says. “This exhaustion can lead to resentment as well as mental health issues.”

If you’re a care partner, try to ask yourself every day: How do I feel? Am I sleeping? Am I exercising? Am I talking to anyone other than the person I’m caring for?

Caregiver or care partner support groups

Support groups can be an invaluable resource. There are many types of groups, and they often are geared toward the exact type of support you may need. For example, some communities have groups for Limited English Proficiency care partners, seeking to provide culturally competent services and resources to those who are not fluent in English.

There are also groups for those caring for individuals with specific types of conditions, such as migraine, arthritis, or Alzheimer’s disease. In addition to medically specialized groups, there are groups designed for older care partners, as well as care partners in the LGBTQ+ community.

Given the high level of distrust with regard to formal services, diverse family care partners oftentimes rely on support groups within the community to learn more about resources that may be available to them. It is important for service providers to meet diverse individuals in their communities to resolve or reduce distrust and to inform them of accessible services, Trinh says.

“It starts with community,” he notes. “Whether you come from the same background, race, ethnicity, or age demographic, talking to others in your community with similar experiences…can be immensely helpful for your mental health.”

Lewis adds: “For caregivers in diverse communities, especially in my own Black and African American communities, relying on our faith, family, friends, churches, and local Black fraternities and sororities is very important. The emotional and physical support is priceless.”

Talk to someone

If you have health insurance, speak to your provider about stress, anxiety, and depression. Therapists, treatments, and medication can help with the mental-health challenges of caregiving, but navigating the system can be overwhelming.

“There are a lot of resources, but how do you navigate them? Where do you start? That is one of the challenges,” shares Angie Boddie, director of health programs for the National Caucus and Center on Black Aging. “Many assistance programs are tied to one’s economic status, and [making] $1 more may disqualify you. That information isn’t readily available. I always ask my [group] presenters: Is this service available to everyone? Who pays for this, private insurance or Medicare/Medicaid? The same applies to caregivers and mental health services. Are the services free? How often can I get them? Is there a copay?”

You can get the answers to these questions by talking to your provider, your health insurance company, and others in your community who have already navigated the complicated health care situation of being a care partner, made even more complex by the American insurance system. If you want to make it easier for care partners and individuals living with chronic pain alike, vote for and work to elect politicians who champion more accessible health care and paid family leave. Ask questions, stay informed, and remember: you are never alone.