In her 1988 research paper “The Social Context of ‘Nerves’ in Eastern Kentucky,” medical anthropologist Eileen VanSchaik wrote that in the late 19th and early 20th centuries, women reporting “nerves” or “sick headaches” would turn to “doctor books” for advice on their “feminine nervous systems.” There they were cautioned, for example, of the danger of “nervous prostration, excitability, fainting spells, most likely organic diseases of the uterus or womb, and many other distressing female troubles.”
Traditionally, in Appalachia, a diagnosis of nerves can mean a number of things: anxiety, disorientation, loss of energy, chronic discouragement. In her research in Appalachian North Carolina, Lisa Curtin, director of the clinical psychologist program in Appalachian State University’s department of psychology, still occasionally hears the term “nerves” used in the region to describe an affliction that’s often treated with “nerve pills,” commonly Valium or Xanax.
Nomenclature has evolved over time, but dismissiveness of depression lingers. As a teenager in the early 2000s, Carol Lemon was told to take her “crazy pills.”
Lemon, 34, has lived in Parkersburg, West Virginia, for most of her life. The oldest of three girls, she was pressed early into the role of mother figure. “My parents always worked,” she says. “My mom had two jobs; my dad had two jobs. So I was always looking after my little sisters.”
Everything that went wrong in the family, she says, was thrust upon her – somehow, ultimately, her fault.
It was too much. She was depressed; she recognized that. But no support was forthcoming.
“A lot of times,” Lemon says, “it was, ‘Oh, you just need Jesus. You need to get back into church.’ I’d get scriptures thrown at me.” Or: “‘You know better; your grandpa’s a pastor. You just need God.’”
The first time Lemon attempted suicide was at 18, after being sexually assaulted. “Nobody believed me. The cop said, ‘Well, you’re 18. He said it was consensual. Goodbye.’”
She was withdrawn; she was cutting herself. Her family would admonish her to “Get over it; stop acting like this. Take your crazy pills.”
She acknowledged, at last, that she needed someone to talk with. She sought help. “I wanted to live. Something in me wanted to.” Lemon was fortunate that behavioral-health services were available in her community; she found help at Westbrook Health Services in Parkersburg.
Barriers to seeking behavioral-health care in largely rural regions can be formidable. Foremost is the availability and accessibility of services. More limited access to campaigns that educate people about mental illness is a factor. The “tough-it-out” mentality endemic to rural communities is another barrier.
Scrutiny also plays a role. The close watch of neighbors, Curtin suggests, can lead to “at least a perceived stigma.”
“There’s an adage in rural communities,” she says, “that if you don’t remember what you had for breakfast, ask somebody else – somebody knows what you’re doing.” Many decline to seek care out of fear of judgment.
The onset of COVID-19 presents its own set of challenges: anxieties around health, finances, sheltering and uncertainty – anxieties that, Curtin says, manifest much like depression.
But recent research has led her and her colleagues to believe that women living in rural areas are probably more open to treatment than previously believed. She stresses, though, that providers must acknowledge the barriers women have faced to seeking and benefitting from care.
‘I’m Not Allowed to Be Depressed’
The reactions Carol Lemon encountered, according to research from Cutin and medical anthropologist Susan Keefe, are rooted in how depression has been historically perceived in central Appalachian communities. Not uncommonly, women experiencing depression believed, or had someone in their life who believed, “that somehow they weren’t right with God, or that this was a sign that they needed to work through something; that prayer would ease their soul,” Curtin says.
Then there’s the stigma. The fear, for example, of your car being spotted outside a mental-health facility and henceforth being perceived as a damaged person, a burden on your family. Or the fear of being judged fundamentally inadequate, a complainer unwilling to acknowledge that “life’s hard; get over it.”
Curtin says that self-stigma, the instinct to blame oneself when in distress, tends to be more difficult to overcome than external stigma. A woman might ask herself, Curtin says, “Why am I not strong enough to get past this?”
Michaela Johnson carried such a burden.
Johnson, 30, of Parkersburg, began experiencing depression after the birth of her third child, Jameson. It was a difficult pregnancy and a particularly hard delivery. Just before Jameson was born, she experienced her first panic attack.
“I kept thinking,” Johnson says, “‘If you can’t stop yourself, they’re gonna put you to sleep. They’re not gonna let you be on this table acting crazy.… They’re not gonna let you be a nut job. You need to calm yourself down.’”
She couldn’t catch her breath; she was certain she was going to die. “That went through my head: ‘I’m gonna die and my husband’s gonna be a single dad and my kids aren’t going to have a mom.’”
Jameson spent a month in neonatal ICU, two hours away in Morgantown, West Virginia. Johnson felt guilty about being away from her other kids and that her husband had to shoulder all responsibilities back home.
“My husband has depression and anxiety,” Johnson says, “so I worried about him.” She would tell her mom, “‘He won’t be able to do this; someone needs to keep him calm.’ I had to worry about him because he doesn’t worry about himself.”
And she was overwhelmed with the sense that “my body didn’t do what it was supposed to do.”
“I cried every day,” she says. “Every day.”
Claire Snell-Rood, a medical anthropologist now on faculty at the University of California, Berkeley, began studying the context of Appalachian women experiencing depression in 2013 as a postdoctoral fellow in the University of Kentucky College of Medicine’s Department of Behavioral Science. She says that many Appalachian women she’s interviewed have told her, “I’m not allowed to be depressed. No one wants to hear about it.” Her goal was to change that.
Research shows that residents of largely rural central Appalachia are 25 percent more likely to experience mentally unhealthy days than the average American. Snell-Rood was interested in what that meant in everyday life in Appalachia and how it was addressed in a region with relatively few health-care resources.
With her colleagues, she conducted research on the prevalence of depression specifically among Appalachian women.
Women are almost twice as likely as men to be diagnosed with depression. Studies have associated the higher risk with biological differences and, Snell-Rood says, with “gender divisions of labor and the fact that women bear a lot of social burdens that are very stressful, especially in terms of caregiving.”
Some researchers, she notes, suggest that the rates are not so different between genders, that men just tend to present depression differently, through aggressive behavior, for example, with women being more likely to internalize and ruminate on their feelings, exhibiting symptoms more commonly associated with depression.
There are effective treatments for women in rural communities who struggle with depression. Johnson grew weary of berating herself; she realized she needed to talk with someone. She was diagnosed with depression and PTSD, and now sees a therapist weekly.
“At first, it was dealing with everything,” she says, “and now it’s more just like friendly banter.”
Meeting Women Where They Are
Properly treating depression in a rural community, Lisa Curtin says, requires not only services that are accessible but that are culturally acceptable, which often involves incorporating someone’s religious beliefs.
Curtin has had clients who’ve told her upfront: “I don’t care what religion you are; I just need to know that you’re accepting of me being Christian, and that it’s not going to be an issue for you.”
Some of the larger churches in her western North Carolina community offer therapy sessions with counselors who are professionally trained and identify as Christian. In interviews with them, Curtin learned that “they weren’t necessarily counseling people on their faith, but they could use tools that the client was already using, such as prayer.” Or the counselor might cite a verse from the Bible to reinforce that what they’re experiencing isn’t a failing and that they’re not spiritually remiss.
This is a cognitive intervention, Curtin says, “but you’re using the client’s language and what they’re familiar with, what’s meaningful to them.”
Another treatment option that can be particularly effective in rural communities is an integrated approach to care: offering behavioral-health services within primary-care or other medical practices. Curtin used to have a private practice in an OB-GYN office.
She says this integrated approach is becoming more prevalent, particularly in federally qualified health centers.
Much like the practitioners of treatment that builds from religious beliefs, Claire Snell-Rood set out to identify culturally appropriate avenues of expression and recovery in the region.
She chose to study a program called Wellness Recovery Action Planning, or WRAP. Women from eastern Kentucky communities met in group sessions overseen by community health workers from the University of Kentucky’s Center of Excellence in Rural Health in Hazard. The stipulation was that participants were already engaged in some manner of treatment, whether medication, counseling, or both.
The evidence-based WRAP model is designed to encourage overall wellness and self-management – to help participants develop simple, everyday coping strategies; identify early-warning signs of a mood change; and create crisis and post-crisis plans.
The overall-wellness focus was well received. The women individualized their care plans, defining which resources worked best for them.
Snell-Rood says that comfort with the word “depression” varied among participants, as did skepticism with “what it meant to accept a mental-health diagnosis or label.”
A WRAP precept is to minimize clinical terminology. The women embraced the fact that they could admit that they experience distress without “hooking themselves on to this wagon of clinical baggage, which in some ways can be really helpful,” Snell-Rood says, but can also generate un-welcomed perceptions.
“I think it’s a pride thing,” says Keisha Hudson, a community health worker and one of the facilitators of the WRAP sessions, of the reluctance of women in her community to accede to a diagnosis of depression. “You’re supposed to be a pillar, the glue that holds the family together. You’re not supposed to be weak.”
“We women take it all on – the children, the home,” says Carole Frazier, also a community health worker and session facilitator.
A core message of the WRAP program, Frazier stresses, is “that you shouldn’t be ashamed.”
Snell-Rood says that in the initial days of her study, it was difficult to get women to show up for interviews. “But once people sat down, I was amazed at how much they shared, and how many people were glad to have a space to talk about depression.”
When Carol Lemon first began seeing a therapist, she had some trepidation about being seen entering a behavioral-health facility. Now she shares her experiences on social media. “I wouldn’t be alive without this place,” she says of Westbrook Health Services. “I know I wouldn’t.”
“I’m a hairdresser,” Michaela Johnson says. “So I talk. I talk openly with people about it. I’m definitely not ashamed.”
Lemon says she has good days and bad – but more good than bad. “I’ve had to cut a few people out of my life for my mental health. That would be family. It’s still a work in progress.”
Each day, she reminds herself that she doesn’t want to go back to being made to feel that everything is her responsibility, her fault. “I do not want to live my life like that. I have to remind myself of that every day.”
The pressures and isolation of the coronavirus pandemic present new challenges for anyone confronting behavioral-health issues.
“The uncertainty and lack of control associated with COVID predictably relates to depressive and anxiety-related symptoms,” Curtin says. “Isolation, loneliness and limited access to social support” can also heighten the risk of depression.
Curtin says that since the outbreak, former clients are reaching out to therapists they haven’t seen for a while, “which is good, but certainly suggests people are struggling.”
“On the positive side,” she says, “some people report greater clarity of their values.” Rural communities generally offer easier access to uncrowded outdoor spaces, and Curtin is seeing people taking advantage, getting more exercise than before.
She also notes the critical role that telehealth has played in filling the face-to-face void. Therapists and clients have had to quickly adapt to services being provided via a computer or smartphone, and, Curtin says, have done so successfully.
Many throughout Appalachia have no access to the internet and no phone, a reality the pandemic underscores. Health-care professionals are advocating for a commitment to the expansion of broadband to the remotest regions as another integral tool in resolving the persistent disparities in physical and behavioral health.