When Caregiving and Abuse Go Together for People With Chronic Pain

by Jennie Shulkin, J.D. and Heather Martarella, Psy.D.

Netflix’s “Maid” tells the story of Alex, a 23-year-old mother, struggling to make ends meet immediately after fleeing an abusive relationship. She spends the next few days physically carrying her toddler from place to place, sleeping in her car and on the floor of the ferry station, and then finally lugging furniture up to a room at a halfway house. The viewer is struck by Alex’s determination to not take the easy way out and return to her abuser, despite facing intense emotional and financial hardship when attempting to obtain governmental assistance, care for her toddler, and hold a strenuous new job as a maid.

Without being able-bodied and healthy, Alex might not have been able to break away from her abuser and gain her freedom. Now imagine Alex with the added challenge of incapacitating chronic pain.

Chronic Pain and Potential Power Imbalances With Caregivers

Chronic pain is defined broadly as pain that lasts longer than six months. The CDC estimates that over 50 million Americans live with chronic pain. Of course, there are varying degrees of chronic pain – ranging from backs that ache when sitting too long to constant, widespread pain that makes working, socializing, and caring for family members or even oneself very challenging. For some, chronic pain is incapacitating, such that basic, everyday tasks require enlisting a caregiver.

Like chronic pain, caregiving exists along a spectrum and takes many different forms. Caregiving can mean performing basic tasks like preparing food and facilitating bathing; it can mean emotional and financial support, or it can mean helping someone schedule and attend medical appointments. Many cannot afford paid caregivers around the clock, meaning that family members and/or romantic partners often fill the role by default.

The resulting power imbalance between unpaid caregivers and those with chronic pain can become extreme and even abusive. In many ways, this type of coercive control is not dissimilar from more typical domestic abuse where dependency is a key reason why the victim does not leave the abuser. Often an abuser intentionally creates an environment where the victim is socially isolated, financially destitute, and living in fear of losing access to food, shelter, and/or custody of shared children.

Similarly, when people with chronic pain are unable to work, they may become financially dependent on their caregivers. And when pain prevents them from participating in normal social activities or the stigma of chronic illness makes it difficult to relate to healthy people, those with chronic pain may become socially and emotionally dependent on their caregivers. To make matters worse, separating from a caregiver might severely limit a person with chronic pain’s access to medications that a caregiver typically picks up, as well as doctors’ appointments and treatments to which the caregiver provides transportation. For those with severe chronic pain, the act of physically removing themselves from their environment and setting up an independent home is simply impractical.

True Stories of Caregiver Abuse

Various people experiencing chronic pain have described in therapy how their caregivers created inescapably toxic environments. (Details changed for privacy.)

— Marcia, a Russian-American, middle-aged woman with multiple sclerosis, low back, and sciatic pain, successfully obtained a divorce from her abusive husband but remained financially dependent on him. Prior to experiencing severe chronic pain, Marcia was a middle-class, financially independent, professional woman. Following chronic pain, Social Security Disability Insurance payments became her only income source. While determined to live alone, she still depended on her ex-husband to find her an apartment, pay rent, deliver groceries and medication to her, drive her to medical appointments, and much more. In return, he demanded that her Social Security checks be signed over to him. He frequently and cruelly withheld portions of these payments – for example, deciding which months he would cut off Internet access and cable. He frequently demanded added payment in the form of sexual favors, leaving Marcia with little choice but to comply if she wanted a roof over her head and food and medication in her cabinets.

— Josie, an Asian-American, middle-aged woman of low socioeconomic status was pressured into exaggerating her pain from rheumatoid arthritis in order to obtain higher doses of opioids. Unless she supplied a steady stream of opioids to her partner and caretaker, he subjected her to frequent beatings. She refused to report him to the police because she feared losing her home and custody of their child.

— Sarah, a German-American, a mother of three young children in her 30s, had fibromyalgia (causing widespread pain throughout her body) and migraines. Her husband was an alcoholic who emotionally, physically, and sexually abused her. Unable to work after chronic pain incapacitated her, her income was derived from private disability benefits, and then once those expired, state disability benefits – until those too ran out. She was denied federal Social Security benefits. From then on, she depended on her husband for all of her financial needs. She dreamed about a divorce, but in the state where she lived, spouses must be married a certain number of years before alimony becomes an option. She was several years away from reaching that benchmark. So she stayed with her abuser – sometimes arriving at therapy with black eyes and stories of emotional abuse. He criticized the pain medication-induced weight gain, as well cursed her when couldn’t complete household chores. He also forced sexual intercourse despite significant pain and protest.

— José, a Latino man in his late 20s, had been injured in a motor vehicle accident. He underwent a few failed spine surgeries that left him walking and moving around with great difficulty. He spent most of the day in a recliner that maximized comfort for him. José’s shame of his unrelenting injury and his changed physical appearance prevented him from socializing, which caused his wife to also feel socially isolated since she seldom socialized without him. She became psychologically abusive towards him – withholding meals he could not prepare himself, calling him “nothing,” and reinforcing that nobody cared about him. In addition to needing her help with his basic needs, she confirmed his belief that nobody else would accept him in his condition, and he became too fearful to leave the relationship.

Where People With Chronic Pain Can Turn for Help

There are no existing resources specifically for domestic abuse victims with chronic pain or a physical disability. The only option is to utilize general domestic violence resources, which is physically and emotionally strenuous for even able-bodied people. For many people with chronic pain, this may create barriers to availing themselves of these resources.

Additionally, the reality of requiring active caregiving means a person with severe chronic pain would need another loved one to take on the role or have the financial means to hire a paid caregiver. That, too, is a barrier to leaving an abuser.

While the least direct pathway, often the best way for those with chronic pain to gain independence from an abusive caregiver is to lessen the reason why caregiving became necessary: the chronic pain.

This is no easy feat, but working with an interdisciplinary treatment team, including a medical doctor, physical therapist, psychologist, and pain coach to create a customized treatment plan is often the most effective way to achieve pain-related goals. While the role of doctors and physical therapists is intuitive for many people experiencing persistent pain, neuroscience research demonstrates the immense benefits of pain psychology and pain coaching in reversing chronic pain patterns and rewiring the brain out of pain. Especially for those who also experience domestic abuse and other trauma, the role of pain psychology and coaching cannot be understated.

Making meaningful progress with pain management plus functional improvements might mean the difference for some people with chronic pain becoming able to care for themselves and extricate themselves from abusive caregiving relationships.

Jennie Shulkin, J.D. is a Harvard Law school graduate with experience working with domestic violence victims as a government prosecutor and volunteer attorney. She herself has a complex case of chronic pain and is the cofounder of a rising company providing comprehensive and interdisciplinary, virtual healthcare services to people with chronic pain.

Heather Martarella, PsyD, is an experienced pain psychologist, has led multidisciplinary pain rehabilitation programs, and is collaborating with Shulkin on their new chronic pain company.