The invisible backbone of chronic pain care is barely staying afloat.

Across the United States, millions of unpaid caregivers and care partners for people living with chronic pain are doing the work of nurses, case managers, and social workers—with zero formal training.

They are the unseen workforce holding up our chronic pain care system.

And they are drowning.

The Numbers Speak for Themselves

According to survey findings from the U.S. Pain Foundation’s 2025 report, The Hidden Struggles and Needs of Chronic Pain Caregivers: 

• 69% of caregivers felt unprepared to manage chronic pain care
• 58% struggled to navigate the health care system
• 81% lacked adequate resources or support

These aren’t isolated cases—they are evidence of a collapsing infrastructure that has offloaded medical complexity onto families, without the tools to handle it.

A Role They Never Trained For

The 107 caregivers and care partners surveyed painted a stark picture of just how many different hats they had to wear to support the individuals they’re caring for. They’re managing complex medication regimens, coordinating between multiple doctors, decoding insurance policies and battling denials, advocating in emergency rooms, and keeping meticulous medical records.

All without any education, training, or real guidance or support.

Many shared their experiences in their own words:

“[I need] assistance in communicating with doctors… getting them to truly understand chronic pain: the impact to the patient and caregiver, encouraging them to dig deeper for medical answers and solutions and to think outside the box, encouraging them to not just follow the rules but to treat each person as an individual.”

This isn’t caregiving—it’s crisis management. And so many are left to fight this battle alone.

Navigating a Maze Without a Map

Chronic pain rarely involves a standalone condition. Caregivers often face a tangle of overlapping diagnoses, multiple providers, and conflicting medical opinions—with little coordination between them. 

Doctors don’t talk to one another. Records get lost. Advice contradicts.

“Every physician says something different… it is hard to NOT have a diagnosis, or to be ridiculed when the specialist doesn’t believe what another specialist indicated you have—or don’t have. It’s very disconcerting.”

The system is fragmented, and the burden of connecting the dots falls squarely on the caregivers—those least equipped to do so.

Medication Management Under Pressure

More than a third of caregivers reported difficulty managing their loved one’s treatments and medications. They’re tasked with handling controlled substances, navigating side effects, and contending with pharmacy delays.

Meanwhile, many also faced barriers rooted in stigma. Fear of having their loved one labeled “drug-seeking” shadows every appointment and pharmacy visit, and jumping through hoops like pill counts and urine screens can feel demeaning. Finding a new doctor, particularly when controlled substances are involved, often seems impossible.

“My wife has a life but is DEPENDENT on her medicine… I have lost 25 pounds worrying if this will be the last month she gets treated with medicine that works for her.”

This level of anxiety is not rare. It’s a constant undercurrent for caregivers who know how crucial chronic pain care is for their loved ones’ well-being—and how little backup or recourse they would have if something goes wrong.

Who Are These Caregivers and Care Partners?

They are spouses, parents, children—often middle-aged or older, and overwhelmingly unpaid. 

From the data:

• 57% care for a spouse or partner; 26% care for their child; 7% care for a parent
• 21% have been caregiving for over 20 years; 38% for 6-20 years
• Over half provide care for 16+ hours a week; 28% provide 30+ hours of care
• 43% live with chronic pain themselves; 85% reported physical strain from caregiving

“Can I qualify for someone to come in to help clean? What happens to her when I die? We have no one.”

This isn’t just about burnout. These individuals are fighting for their loved ones’ very survival—and their own. And they’re too often fighting alone.

Training Isn’t Optional—It’s Vital

Caregivers aren’t asking for miracles.

They are desperate for help that any functioning system should already provide:

• Basic training in pain management
• Guidance on effectively communicating with health care providers
• Education on medication management and safety
• Access to mental health resources for caregivers
• Financial support or assistance
• Legal support for navigating disability benefits or workplace accommodations
• In-person respite support and time for themselves—even just a few hours a week

“My health is crumbling due to the stress… having some help navigating that would be great.”

The requests are modest. But for those struggling to provide care, the potential impact is immediate and life-changing.

Caregivers Show Up. The System Must, Too.

“It’s been hard dealing with a loss of income, putting repairs on hold, taking a lot of time off to take my wife to the doctor… You do not want to go down this road. I’m not very hopeful at this point.”

Caregivers are doing medical work without clinical tools. They are advocating for survival without institutional backing. They are juggling the careers they need to support their loved ones with the medical demands that don’t care about a 9-to-5.

They are managing chaos without training. They are giving their all, every day,  and getting little help in return.

“Caregivers, parents, friends need to have resources and the knowledge on how to recognize when it becomes too much for the person they are caring for.”

If we want better outcomes for those living with chronic pain, we must not overlook the people who care for them.

Because showing up for a loved one shouldn’t have to mean going it alone—untrained, unprepared, unsupported, and unheard.

To learn more about the U.S. Pain Foundation’s Pain Awareness Month initiative, click here.