(p. 24) Women with Serious Mental Illness, Resilience, and the Recovery Movement
Imagine you are severely depressed, wondering if there is any purpose to life, and having difficulty differentiating reality. You are taken to an institution where they lock you away from your loved ones, and provide treatments that only make you more depressed and scared. To add to this, a spouse or provider could decide to keep you there indeterminably. This has been the case for many women who have been retraumatized by their treatment experiences.
Over time, things have gotten somewhat better in our mental health system. Women have demonstrated their resilience and used their voice to speak out about the egregiousness of mental health service delivery and the marginalization of people with serious mental illness (SMI). In the recovery movement of the 1970s (also known as the consumer movement), people with SMI advocated for their rights after having been released from institutions (Davidson & Roe, 2007). They called themselves ex-patients, consumers, or survivors, and advocated for their right to be treated as more than just a mental health problem. These ex-patients became leaders in mental health policy reform.
Alongside this movement, the World Health Organization conducted research that found partial to full capacity for recovery among 25% to 65% of people with SMI, challenging societal and clinical beliefs that patients are doomed to a life as a “mental patient” (Carpenter & Kirkpatrick, 1988; World Health Organization, 1973). This research led to the realization that a mental illness was not necessarily a permanent experience that could take over one’s life. This was at odds with the hopeless prognoses assigned to many people who had been institutionalized for most of their life (Davidson & Roe, 2007).
(p. 25) What Does Recovery Mean?
In contrast to how the term has been historically used in the substance abuse field, recovery in the mental health field has come to mean recovery beyond the effects of having a mental illness (Davidson & White, 2007). It does not necessarily signify a resolution or elimination of all symptoms. Rather, it can refer to recovery from a life of stigma, marginalization, and oppression. From this standpoint, recovery means that a mental health challenge is only one aspect in the life of an individual with many assets, strengths, capabilities, and interests. People in recovery are viewed as having a desire for self-determination and the right to live a life of meaning as they so define (Davidson et al., 2009).
As people have engaged in these advocacy efforts, systems have become more invested in this shift in how mental health services are delivered. Recovery-oriented care has become the recommendation of the President’s New Freedom Commission on Mental Health (U.S. Department of Health and Human Services, 2003) and the Federal Action Agenda (Department of Health and Human Services, 2005). In 2003, President George W. Bush mandated this philosophy of care for the provision of mental health services in the United States. This change in national policy reflects increasing investment in the recovery process in psychiatric settings around the world.
Foundations of recovery conceptualize experiences of stigma and marginalization as rampant among those with SMI. The experiences of individuals may be as much about the effects of marginalization as the symptoms of mental illness itself (Anthony, 1993; Davidson, 2009). Leaders in the recovery movement put forth that all people with SMI have strengths and capabilities, and that everyone should be able to live a life of meaning.
Tondora and colleagues (2008) conducted research on the personal dimensions of recovery. They identified internal factors (insight, resilience, determination, self-managed care, empowerment) and external factors (peer support, social support, family). The following qualitative themes have also emerged from personal narratives of recovery:
• Reawakening of hope after despair
• Moving from withdrawal to engagement and active participation in life
• Active coping rather than passive adjustment
• Moving from alienation to a sense of meaning and purpose
• A complex and nonlinear journey
• Thriving, not just surviving
• No longer seeing oneself as a person primarily with a psychiatric disorder and reclaiming a positive sense of self.
The Substance Abuse and Mental Health Services Administration (SAMSHA, 2008) developed a National Consensus Statement on Recovery that identified the 10 Fundamental Components of Recovery. These components indicate (p. 26) that recovery is self-directed, individualized, empowering, holistic, nonlinear, strengths-based, peer-supported, and respectful, and instills both responsibility and hope. The idea is that these constructs of recovery can help individuals build a meaningful life beyond the effects of mental illness as they strive to achieve their potential and personal goals.
As one can imagine, a recovery-oriented care service delivery model has important implications for women. As we look back at the history of women in the mental health system and ongoing concerns with oppression, it only makes sense that transformation of mental health systems to recovery-oriented care could make an immense impact on the lives of women with SMI. Hence, the basic components of recovery-oriented care will be explored in the next section of this chapter.
The 10 Fundamental Components of Recovery
Experiencing Support from Others
The value of providing and experiencing support from others is multifold. Many times those with SMI have been isolated or separated from family, romantic partnerships, and meaningful relationships in the community. The stigma and marginalization that is a part of the experience of mental illness is disenfranchising. To be cast out and unaccepted by one’s community without core social support can in itself be debilitating. In Western culture the tradition is to offer inpatient and sometimes long-term hospitalization (Khandelwal, Jhingan, Ramesh, Gupta, & Srivastava, 2004). In contrast, many Eastern cultural traditions may keep people with SMI at home, in their community, or find other ways to incorporate them into daily life, such as by finding a place for them in their workspace (Jablensky et al., 1992). The World Health Organization has also found better outcomes in some studies of those in developing countries, where individuals are more typically cared for by their families and community members (Jablensky et al., 1992).
Relatedly, one of the most important elements of evidence-based treatment for those with SMI is family support and involvement, as highlighted by the Schizophrenia Patient Outcomes Research Team study (Dixon et al., 2009). Family psychoeducation has also been shown to consistently improve outcomes for people in recovery and caregivers (Dixon et al., 2001).
Experiencing support from others can also have multiple definitions, and support not necessarily have to come from one’s family of origin. Support can come from a range of community members such as a spiritual leader, mentor, job coach, coworker, case manager, or peer. Recovery is not a process that can be done alone (Davidson et al., 2005). It is crucial for people in recovery to feel part of a community, and to have supportive individuals in their lives who provide encouragement and support throughout times of challenge and wellness.
(p. 27) Renewal of Hope and Commitment
In the process of recovery, hope is fundamental. This is the possibility for a renewed sense of purpose and self. Belief in the person with SMI can offer important sources of hope (Davidson et al., 2005). Hope can renew motivation and desire and contribute to the recovery process. In this vein, recovery also means that individuals can feel capable of expanding their personal abilities and make their own choices, regardless of the state of their illness or symptoms (Resnick, Rosenheck, & Lehman, 2004). In many studies hope has been correlated strongly with well-being, quality of life, spirituality, resiliency, self-esteem, self-confidence, self-transcendence, and subjective global life satisfaction (Corrigan, McCorkle, Schell, & Kidder, 2003; Davis, 2005; Landeen, Pawlick, Woodside, Kirkpatrick, & Byrne, 2000; Phillips-Salimi, Haase, Kintner, Monahan, & Azzouz, 2007; Wahl et al., 2004).
The values of hope and commitment hold particular meaning for women with SMI. Hope and belief in the individual confront challenges that may face women with SMI who are experiencing intersecting oppressive experiences of psychiatric stigma and sexism or misogyny. Housing can also foster hope and recovery among women with SMI, as shown in at least two different studies (Kirst, Zerger, Harris, Plenert, & Stergiopoulos, 2014; Manuel, Hinterland, Conover, & Herman, 2012). The recovery literature indicates that among women with SMI, having social connections that are reciprocal and fulfilling can motivate them to get out of the hospital and have hope for their success (Manuel et al., 2012).
Meaningful Activities or Valued Social Roles
The importance of positive activities in life and valued social roles should not be underestimated. People with SMI can feel cut off from society and the full rights of citizenship (Rowe, 2015). Being able to engage in functional social roles such as employee, student, friend, or even voter is central to recovery (Davidson et al., 2005).
Many women have found that the SMI has led to a change in the traditional roles they might have held (Chernomas, Clarke, & Chisholm, 2000). This can have a particular impact as women may be socialized to become mothers or caregivers or to play other important roles within families and relationships that are then limited by an SMI. It is important that women with SMI are allowed to expand their social roles and associated value in society.
Redefinition of Self
Redefinition of the self is one of the most consistent constructs that appears in the recovery literature. This relates to seeing oneself not as a mental health (p. 28) patient, but as an individual with strengths, aspirations, capabilities, and responsibilities, with a right to live one’s life as desired. In essence, this perception of the self rejects the sociopolitical context frequently projected on those with mental illness. This concept portrays identity as multidimensional—that being a mental health patient does not define oneself (Davidson et al., 2005). This is tremendously important, as many people have been given a negative prognosis that their life will become solely focused on taking medications, going to therapy, receiving disability income, and obtaining supportive housing (Copeland, 2007). This shocking life sentence can do great harm, increase internalized stigma, and diminish self-worth. People with SMI can thus be robbed of a belief in their own capacity to heal and recover, and the motivation to pursue their life goals.
The recovery concept of a redefinition of the self holds particular value for women with SMI who have faced stigma that has interfered with their life goals (Wisdom, Bruce, Saedi, Weis, & Green, 2008). These goals may be related to career or family aspirations. Allowing these women to redefine themselves in a way that provides purpose and meaning can promote healing and rebirth.
Management of Symptoms
Complete recovery from symptoms may not be a goal; it may not be expected, or even necessary. Rather, recovery represents the capacity to manage symptoms in a way that works for the individual (Davidson et al., 2005). This perspective acknowledges that there will be periods that are more challenging and difficult, but there will be other periods where one may be symptom-free or have an increased capacity to deal with symptoms. The entire journey is part of the nonlinear recovery process. Individuals are empowered to engage in methods that help them with symptoms as they choose, rather than being a passive recipient of services who is told what to do or how to deal with symptoms.
Women with SMI have talked about the value of being able to deal with their symptoms in a way that makes sense for them and their life (Manuel et al., 2012). They have also stated that when symptoms reemerge, say after a hospitalization, it is important to have a lot of support from providers. This support might mean being able to phone someone when symptoms reappear and having social connections who can help. Women with SMI have also discussed the value of taking responsibility for doing things to help manage symptoms, such as taking medications, engaging in treatment, attending appointments and programs, and avoiding social isolation. Having access to appropriate mental health care is invaluable for maintaining wellness, according to women with SMI. The recovery perspective involves shifting from an illness narrative to a strengths-based approach, as suggested by the Recovery to Practice Curriculum (APA & Jansen, 2014).
(p. 29) Empowerment and Engagement in Full Rights of Citizenship
There are different levels of citizenship: non-citizenship, in which an individual is separated from society; second-class citizenship, in which an individual has suboptimal connections to society; or full citizenship, in which an individual has strong ties to systems, rights, and responsibilities (Rowe, 1999). Full citizenship involves valued social roles, responsibilities, and resources (Ponce & Rowe, 2018). People with SMI and other life disruptions such as addiction, homelessness, or criminal justice involvement have the right to full citizenship, but instead they frequently experience non-citizenship, stigma, and marginalization. People in recovery can demand their full rights to citizenship, such as the right to decide where to live, how to spend their time, and whom to love. They can be empowered to engage in and take on responsibilities like other citizens do, such as having a job, voting, or community organizing (Davidson et al., 2005).
Rapp and Goscha (2012) explained how the social processes and practices contribute to oppressive experiences for people with mental illness. They advocated for a focus and shift toward maximizing human potential and well-being, with movement into the community rather than withdrawal from it. This focus can become a transformative process rather than a focus on barriers. As the Rev. Dr. Martin Luther King, Jr. said, “Whatever affects one directly affects all indirectly. I can never be what I ought to be until you are what you ought to be. This is the interrelated structure of society” (King, 1967, p. 1).
Recovery narratives of women with SMI also reflect their desire to be a part of society (Manuel et al., 2012). They have voiced how the stigma of mental illness and being shunned can lead to social isolation, making them feel treated like they are contagious. The ability to reengage in society and have a connection to others as a friend, mother, coworker, or family member is crucial to their successful transition into the community from a hospital setting.
Assuming Control and Agency
Imagine being told that you must take a specific medication every day, that you need to live in a certain area of town with people you do not know, and that you need to check in for appointments at a local mental health center every week. To remain in your supportive housing, you have to attend a specific number of therapy groups every week. At least once a month you are expected to have your blood drawn to see how your medication is affecting your body. You must be agreeable to medication changes, despite the complicated side effects you experience. Meanwhile, you would like to attend some classes at the local university on finances and get a part-time job to earn money and feel engaged with other people on a regular basis. You would also like the time and space to try to date a bit on the weekend. However, it is difficult to fit everything in your life with so (p. 30) many expectations from your providers to manage your symptoms and keep you out of the hospital.
This is all too often the life that is prescribed for people with SMI. No wonder the concepts of assuming control and agency in one’s life hold great importance! Many times, those with SMI feel like they have a loss of control, with many of their rights taken away. They may have been hospitalized against their will, medicated against their wishes, detained, arrested, and tasered. A judge may have appointed a conservator to make decisions about their welfare, their finances, and their medical treatment. Not surprisingly, women with SMI have emphasized the importance of having autonomy and agency in relation to support from others and specifically from treatment supports (Manuel et al., 2012). Women with SMI have highlighted the value of support—but a type that honors their perspective and voice. After experiencing the loss of basic human rights and often the lack of full citizenship, being able to assume control and agency in one’s life may serve as a major impetus toward recovery.
Acknowledgment and Understanding of Illness and Self-Direction
This recovery concept entails that individuals acknowledge and accept the limitations they experience as a result of their mental illness. This can help them unearth their talents, strengths, and new possibilities that will empower them to reach their personal life goals even with a disability (Davidson et al., 2005). This does not mean they must accept that they have a specific mental illness. Rather, they recognize they have some challenges and build increased understanding for how they are going to use their own capabilities and strengths to pursue life goals. A qualitative study among women with serious depression highlighted the theme of taking one’s own responsibility for wellness, admitting when one needs help, and learning to cope (Snell-Rod et al., 2017). In this study, the women discussed that attending treatment services only goes so far and that individuals are the ones who must put things into action to make changes in their lives and start feeling better. Although support can come from treatment services, they also valued self-sufficiency.
Systems are encouraged to shift away from just treating or rehabilitating people toward supporting people in their own efforts to manage and overcome specific mental health challenges, while they take their own paths and own their own responsibility for working toward their goals and life dreams (Davidson et al., 2007). People with SMI can become the drivers of their own recovery experience rather than being told how their life will be and what they should do as “mental patients.” This shift from a traditional approach to a self-directed one increases transparency, flexibility , and collaboration in care between providers and the recipients of care (APA & Jansen, 2014). Assertive community treatment, supported employment, cognitive-behavioral therapy, skills training, and other evidence-based treatments could help women to take responsibility for their clinical care at a mental health organization (Dixon et al., 2009).
(p. 31) Recovery Programming for Women
As we consider these basic components of recovery, our thinking may shift with regard to how people experience their mental health challenges and the messages in this experience. A traditional, illness-based model might be reflected by a statement like this: “I have been told I have this serious diagnosis called schizophrenia, which means I have to take medications daily, apply for disability income, and make treatment my primary focus. I cannot pursue my college education and the work I desire.” A more hopeful message is, “Yes, I have this challenge, but these are the ways I am finding to deal with it. Here is how you can partner with me in those endeavors.” What a transformation! Unfortunately, the first message is the one that many people receive. It’s no wonder many people refuse to accept a diagnosis that involves giving up their dreams and hopes for the future. Ultimately, as providers partner with people in recovery, there is a movement away from concepts like compliance, imposing treatments rather than just offering them. There is a change from controlling or compulsion to understanding that the woman in recovery is the expert in her care (Slade, 2009).
A recovery perspective can have an amazing impact on the experiences of women in recovery and can serve as a guide for great transformations in our mental health systems. Even today, treatment of women in the mental health system can be uncomfortable, sexist, and traumatic (Frueh et al., 2005). A shift to a recovery-oriented model can lead to empirical improvements and reported qualitative improvements.
Systemic reviews indicate the need for more empirical research focused on the impact of recovery-oriented care, though there is some literature that suggests there may be an improvement in quality of life for people in recovery, better engagement in treatment, and fewer social problems (Guidjonsson et al., 2011; Kidd, McKenzie, & Virdie, 2014). Qualitative research has demonstrated the beneficial effects of implementation of four factors of the recovery orientation (Mancini, 2007): meaningful activities, supportive professional relationships, peer support, and choice of preferred treatment options, which is associated with an increase in self-efficacy. Other studies indicate that this model can help providers improve their attitudes toward those in recovery, increase their knowledge base, and improve their clinical practice (Kidd et al., 2014). Staff education in the recovery perspective has also been shown to have a positive impact on client functioning (Elbaz-Haddad & Savaya, 2011).
Interestingly, an increase in privacy on inpatient psychiatric units, which aligns with recovery-oriented practice, leads to a higher likelihood that individuals will choose to take their medications (Frueh et al., 2005). Settings that incorporate women’s preferences for personal space can have a positive impact on their decisions to take medications or not. Such conceptual shifts in understanding seem like small alterations, but they can make a big difference in how a woman experiences treatment and her options of choice and control in such a milieu.
(p. 32) Biological and Developmental Concerns Among Women with SMI
Women’s engagement in their recovery journey should be person-centered and shaped by their uniqueness, meaning not only their choices and goals, but also their biological and developmental experiences. Thus, the literature should reflect the specific experiences of women in this area in order to be integrated into a cohesive and effective approach in care for each woman. In this section, issues pertaining to the biological and developmental concerns of women with SMI will be addressed with regard to medications, reproductive issues, general physical well-being, and life expectancy.
The literature indicates that women and men may respond differently to psychotropic medications. However, attention is not always paid to this issue, an oversight that could be of serious concern. For instance, responses to antipsychotic use among women and men are related to gender-specific factors such as smoking, concurrent medications, exercise, substance use, hormonal transitions, body build, and diet (Seeman, 2004). Women may need a smaller dosage of an antipsychotic medication than men to reach the same effect. Nonetheless, antipsychotic prescription guidelines do not make this gender differentiation (Anthony & Berg, 2002; Anthony & Berg, 2002a; Harris, Benet, & Schwartz, 1995; Kashuba & Nafziger, 1998). Women’s bodies typically have 25% more adipose tissue, and since most antipsychotic drugs accumulate in lipid stores, this makes a difference in terms of how the drug is metabolized and its effectiveness (Beierle, Meibohm, & Derendorf, 1999). Since women have more adipose tissue, more of the antipsychotics accumulate over time in the body, a factor that should be considered when women are given depot injections (Seeman, 2004). The literature indicates that after stabilization with a particular depot injection, intervals between doses of the injection should be longer for women than for men (Altamura et al., 2003; Daniel, 2003).
Women with schizophrenia are also more likely than their male counterparts to be taking adjunct drugs. Hence, there is increased opportunity for drug interactions, which can either lower or raise antipsychotic serum levels. Levels can also be affected by factors such as smoking, alcohol intake, and coffee consumption (Balant-Gorgia, Gex-Fabry, & Balant, 1996; Gex-Fabry, Balant-Gorgia, & Balant, 2001).
Other literature in this area points to factors such as acute dystonia, which occurred more often in one sample of women than men with first-episode psychosis, even though this has been thought to be more common among men (Casey, 1991). Though men and women may have similar adverse drug effects, those among women have been more serious (Miller, 2001). Due to the effects of antipsychotics, women also need mammograms, electrocardiograms, bone (p. 33) density scans, diabetes and cardiovascular workups, as well as dosage modulation for aging women (Seeman, 2004). Women need bone density scans due to the effect of low estrogen levels and an increase in prolactin due to antipsychotics, which can lead to osteoporosis or bone breakage (Becker et al., 2003; Wieck & Haddad, 2003). There is some concern that the higher prolactin levels may put women at increased risk for breast cancer. Dosage modulation in older women is important because renal excretion becomes progressively impaired as people age and drugs do not metabolize as quickly (Seeman, 2004).
As women are more likely than men to have adverse weight gain related to antipsychotics, they should be evaluated for weight gain regularly, especially given research showing that women are more concerned than men about obesity. This pertains to the impact of obesity on self-image in an appearance-focused society (Allison et al., 1999; Homel, Casey, & Allison, 2002). Ideally, prescribers would discuss healthy weight and contributing factors (diet, exercise, smoking) at the initial assessment so that wellness goals could be maintained and monitored from a proactive standpoint.
Though we know hormones play a role in how women may experience mood and mental illness, there is little research in this area on women with SMI (Seeman, 2004). During pregnancy, the postpartum period, and menopause, assessment for prescription changes may be needed, such as possible dosage modulations. Hormonal fluctuations during the menstrual cycle could affect different systems of the body and impact protein binding and the volume of distribution of drugs, requiring variations in prescribing (Kashuba & Nafziger, 1998; Seeman, 2004).
The literature also indicates that women experience different side effects than men, such as drug-induced hyperprolactinemia when taking antipsychotics (Kuruvilla, Peedicavil, Srikrishna, Kuruvilla, & Kanagasa-Bapathy, 1992; Naidoo, Kinion, Gilmore, Liu, & Halbreich, 2003). Prolactin levels increase up to 10 times normal with this medication, resulting in rates of amenorrhea as high as 78% (Wieck & Haddad, 2003).
Though there is some literature to support the concept that women have a better response to antipsychotic treatment than men, this may have to do with many other variables and less to do with the response to medication. Instead, this difference may be related to women’s lifestyle differences, enhanced social support, and relative hormonal protection (Meltzer et al., 1997; Seeman, 2004; Torgalsboen, 1999). However, the concept that needs to be considered more widely is that if women happen to have better outcomes, then their maintenance antipsychotic doses could be less than in men (Seeman, 2004). There is also some question about the need to stay on medications for a lifetime, which is frequently the default position despite the considerable effects from lifetime use of medications. Moreover, there is some evidence that individuals may do better (p. 34) if they only have episodic pharmacologic treatment (Omachi & Sumiyoshi, 2018; Thompson, Singh, & Birchwood, 2016).
Pregnancy and Breastfeeding
There should be increased knowledge and focus on pregnant women with SMI in relation to the effect of drugs on labor, developmental challenges, and potential effects of withdrawal for the infant and behavioral toxicity (American Academy of Pediatrics Committee on Drugs, 2000; Boyle, 2002; Craig & Abel, 2001; Dawes & Chowienczyk, 2001; Ernst & Goldberg, 2002; Frederikson, 2001; Giere, 2001; Patton, Misri, Corral, Perry, & Kuan, 2002; Seeman, 2004; Shehata & Nelson-Piercy, 2001; Winans, 2001; Wyska & Jusko, 2001). For instance, due to hormonal changes, women may need less of a drug during pregnancy than when they are not pregnant (Seeman, 2004).
Breastfeeding has to be conceptualized differently as well, since medications that may be safe to take during pregnancy may not be safe during breastfeeding. According to some recommendations, it may be best to refrain from taking medications while nursing (Della-Giustina & Chow, 2003). Ascertaining whether medication is needed and then choosing the safest medication is a wise approach. If medication is needed, the drug chosen should have a low milk-to-plasma ratio, a high molecular weight, a short half-life, and high protein binding in maternal serum; it should be ionized in maternal plasma and should be non-lipophilic. If there is a chance that a medication could put the infant at risk, the infant should be monitored for drug levels. It is also suggested that a mother take her medication after she has completed a breastfeeding session, or before the baby’s longest sleep period of the day. This can limit the baby’s exposure to the medication.
Recent research shows women are more likely to have serious concerns with postpartum depression if they have particularly painful healing periods after giving birth. However, rarely do they experience postpartum care that is as good as their prenatal care, which might be able to prevent more serious postpartum mental health issues (Ou, Zhou, & Xiang, 2018). Longitudinal studies suggest that recovering from giving birth involves much more than the healing of the reproductive system (McGovern et al., 2006). There is a significant risk of depression during pregnancy, ranging from 7% to 26% (Hobfoll, Ritter, Lavin, Hulsizer, & Cameron, 1995). Depression during pregnancy is a predictor of postpartum depression (Graff, Dyck, & Schallow, 1991). The incidence of postpartum depression is 10% to 15% in all women; it affects the mother’s functioning and ability to care for the infant and interrupts the functioning of relationships (Graff et al., 1991; Logsdon, Wisner, Billings, & Shanahan, 2006; Moses-Kolko, & Roth, 2004).
Unfortunately, the likelihood that women will receive mental health treatment for postpartum depression is not high given that many physicians do not regularly screen for it, refer women for treatment, or have the ability to do so. Addressing such challenges and barriers is crucial to ensuring that women receive the appropriate mental health treatment throughout their maternal care (Logsdon et al., (p. 35) 2006). The peripartum period may be even more challenging for women already diagnosed with SMI as they may have intersecting challenges that can make the experience even more difficult (Mowbray, Oyserman, Bybee, MacFarlane, & Rueda-Riedle, 2001).
Physical Well-Being and Life Expectancy
Individuals with SMI have an increased risk of comorbid physical conditions and a much lower life expectancy than those without SMI (Druss et al., 2018; Miller, Paschall, & Svendsen, 2006). In fact, standardized mortality ratios among psychiatric patients are more than twice those of the general population, and life expectancy is 25 to 30 years less than the general population (Colton & Manderscheid, 2006; DeHert et al., 2011; Felker, Yazel, & Short, 1996). A more recent study has indicated that obesity, hypertension, diabetes, and chronic obstructive pulmonary disease are the most prevalent comorbidities among those with SMI (Miller et al., 2006). Potential factors include poor hygiene, reduced physical activity, a high rate of smoking, substance use, medication-induced weight gain, and poor social support, all of which likely contribute to these physical challenges. Women are at an increased risk of more life-years lost than men (Chang et al., 2011). Men with schizophrenia and women with schizoaffective disorders are at the highest end of life-years lost. Many of the experiences that contribute to the life-years lost relate to smoking, diabetes, and obesity, which are preventable causes of premature death.
The data indicate that greater attention and focus on exercise can be beneficial to those with SMI, using an aerobic and resistance training model (Marzolini, Jensen, & Melville, 2009). Women with schizophrenia are less likely to exercise than men on a weekly basis (Brown, Birtwistle, Roe, & Thompson, 1999). An exercise program has been associated with significant improvements in overall mental health and depressive symptoms, improvement in functional exercise capacity, and muscular strength. Interestingly, reduction in depressive symptoms was also related to a greater likelihood to exercise.
Clearly, recovery-oriented care must take into account the unique biological and developmental concerns for women with SMI. In the next section, several case narratives will depict some of the unique experiences of women with SMI, including biological and developmental concerns. The recovery-oriented model will be applied to their stories to highlight this perspective, as well as clinical strategies for enhancing empowerment in their mental health care.
Case 1: Savannah
“Savannah” is a White, American, 32-year-old woman who experienced her first psychotic break at age 26. She hears voices and believes that computers installed (p. 36) a pacemaker in her body while she slept. She believes that computers have taken over the world and that she must find and throw away computers and related technology so humans can regain their power. These beliefs have led her to take computers from her family members and destroy them by dropping them, running them over with a car, or lighting them on fire. When she is around a computer she becomes agitated and explains that people working on the computers need to get out from under their control.
Savannah has a master’s degree in business. She was working in business administration when she experienced a psychotic break. Her aunt helped her take a medical leave during this time so she could try to hold on to her job. However, when she returned to work after her first hospitalization, she stopped taking her medications due to excruciating akathisia, weight gain, and the development of diabetes. She threw three computers out of the window at work, resulting in her job loss.
Savannah’s aunt helped her get support again through the mental health system. She was restarted on a different antipsychotic with preventive treatment for side effects, since she felt she would rather die than have akathisia again or keep gaining weight. Some of the initial challenges she faced were increased agitation from her delusional beliefs during certain parts of her menstrual cycle; at other times she experienced increased positive results from the medications. Her providers noticed and tracked the cyclical patterns of her mood and psychotic symptoms, providing different pharmacologic interventions during these times. She worked with recovery-oriented clinicians who enabled her to communicate her desires and experiences of the medications, while they offered their expertise to best inform the decision-making process. Savannah included the support of her aunt, her grandfather, and a best friend in this collaborative process.
Some of the recovery-oriented nature of Savannah’s treatment included open communication practices, person-centered treatment planning, and increasing her experience of autonomy in an experience that initially felt involuntary since she had first been hospitalized against her will. Related to the challenges with weight gain and diabetes, in addition to alterations in prescribing, the psychiatrist, Savannah, and her clinician focused on wellness strategies. They developed a holistic plan including her preferred forms of exercise, such as weekend hiking, walking, and yoga one day a week, as well as different mechanisms to maintain a healthy diet. This plan helped her with mood, management of weight gain, and dealing with distress from psychotic symptoms.
The first few years after Savannah’s psychotic break were rough. In time, she accepted that she had an illness and could recognize her challenges, enabling her to assume greater control and agency in her own life. She could then accept responsibility for communicating with her providers and natural supports about her mental health care and life goals. She set a goal to return to work because working brought meaning to her life. Her team supported this goal and adjusted her appointments, expectations, and pharmacologic regimen so that she could reengage with the world of work.
(p. 37) Soon Savannah found a new job and started working part-time with the plan to assume a full-time position within a year if she felt like things were going well. This endeavor was one of the most important parts of her recovery journey as it helped her embrace her identity and realize that she had every right to hope and believe that she could live a meaningful life. Savannah realized she had to do some things differently than before, such as drink much less alcohol and refrain from her occasional marijuana use as she realized it made her symptoms worse. She decided to get better sleep, watch her stress levels, and do things she enjoyed, such as spending time with friends, reading, playing the guitar, and cooking. She also realized that engaging in activities like these helped her keep her mind off thoughts about computers that were distressing. Savannah worked with a therapist over time about how to navigate her way in a world full of computers and technology, differentiating real threats from thoughts that she was in danger. This discernment helped her return to the business world where computers were a part of life, and she could come to tolerate them with more ease.
Case 2: Jennifer
“Jennifer,” an outpatient psychotherapy client, is an African American woman who had just reached her 50th birthday when she faced a tragedy: Her 19-year-old son was unjustly killed by police in a protest about the profiling of young Black men. After he was shot, the police realized he was unarmed. The whole community mourned this loss. There was strong discord between this community and local law enforcement over racial profiling and injustices in the nation.
This experience was so traumatic for Jennifer that she could not speak for a month and barely ate. She lost 30 pounds in one month and her whole family grew concerned for her welfare. This occurred in the aftermath of episodes of severe depression throughout her life and four suicide attempts, two of which were very serious. Despite this history, Jennifer had been doing quite well for the past five years. She was working full-time, had raised her other son mostly on her own (he was currently living with her), and was dating a new man she felt she could trust. She was also consistently attending psychotherapy appointments and used therapy to process difficult emotional issues and to maintain wellness in her recovery journey.
Jennifer’s parents and brother held a family discussion and decided they would ask her if it would be a good time to get some extra support or think about engaging in a crisis respite stabilization service program. This program is an alternative to a full psychiatric hospitalization, consisting of a temporary residential stay where mental health services are available and patients can typically come and go as they please. Jennifer was thankful that her family did not become overly intrusive or jump to the conclusion that she was suicidal and needed further intervention. In the past, she had had traumatizing experiences with involuntary hospitalizations. However, she was eventually able to discuss her emotional state with her family and began to strategize her care in the wake of this recent traumatic event.
(p. 38) Jennifer did not agree to go to crisis respite center, but initiated more sessions with her therapist, began attending a bereavement support group, and engaged in activism over the next few years. Jennifer also realized she had been working on a lifetime of recovery strategies that she could currently employ, such as spending time with her friends and family, seeking out spiritual guidance, engaging in pleasant hobbies such as listening to music and sewing dresses, and attending exercise classes. She reconnected with these recovery strategies, which served as forms of personal medicine and served as ways she could discharge some of her emotional distress. She communicated with her family about her need for space to process her grief and pain without being infantilized. In essence, Jennifer advocated for her right to have her own agency, autonomy, and personal control in a situation in which she lacked control with the loss of her son. Her family respected these wishes but also communicated about how they could check in with her in a reasonable way so she could access their support as needed.
Jennifer was going through menopause and felt like her hormonal shifts might be worsening her grief and the likelihood of a new depressive stage. She discussed this with her psychiatrist and explored pharmacologic strategies and physical interventions. The psychiatrist assessed her hormone levels and tracked how they affected her mood. She integrated some of her coping strategies into this process, which helped when she felt more depressed and had stronger feelings of grief.
One of the most meaningful recovery tools Jennifer used was getting more involved in the valued social role of community action and advocacy. Jennifer felt strongly about wanting to honor her son’s memory with how she lived her life after he passed and served as an advocate in her local community related to the issues of racial profiling of young Black men. Jennifer felt a sense of empowerment by being involved in social justice action; she felt like she was making a difference in the world. Her story also highlights the sociocultural contributors to SMI for women, including experiences of racial violence and oppression.
There are many clinical applications of a recovery perspective. Providers can take an egalitarian approach with women with SMI. This involves valuing the expertise of the individual in her own experience. The provider can be a partner in making decisions, setting goals, and planning treatment. It is important to take off the “expert hat” as someone with all of the answers, while retaining the capacity to offer whatever clinical expertise one can.
Person-centered treatment planning and shared decision-making models offer useful tools for implementing a recovery approach (Drake, Deegan, & Rapp, 2010; Tondora, Miller, Slade, & Davidson, 2014). A multicultural feminist framework can help to understand problems that arise from sociopolitical experiences of oppression toward women with SMI. This perspective highlights the experiences (p. 39) of stigma from mental illness and related intersections with racism, sexism, homophobia, and classism (Worell & Remer, 2003). It is important for providers to create a supportive, safe, and empowering spaces where women can be heard. This can validate their experiences and allow them to grow, heal, and use their own voices to decide what their recovery looks like.
When working with women in recovery to build hope, it is important for providers to listen nonjudgmentally and with trust and acceptance, believing in the women’s potential and strength (Slade, 2009). Any setbacks can be viewed as part of the recovery process. Therapists can provide a corrective emotional experience in this way for those who may have been previously shamed for relapse. Providers can also support women in tolerating failure. They can offer support to increase coping, and work with the individual on accessing external resources such as social roles, housing, employment, and education. Therapists must be available and trustworthy in times of crisis, and provide a range of treatment options per the woman’s choice. For example, one woman’s plan might include her preferred medications and places to be hospitalized.
A Wellness Recovery Action Plan (WRAP) group may amplify the woman’s personal coping, strengths, and mechanisms for staying well (Copeland, 1997). A WRAP group is normally peer-led and involves the development of recovery tools, advance directives, safety and crisis plans, and other resources. WRAP is also an evidence-based practice that has been evaluated and refined based on research outcomes (Jonikas et al., 2013). Some of the inherent value of WRAP is that the plan is developed and written by the woman and can then be shared with a provider, other team members, or natural supports.
Offering interventions in a noncoercive or nonpunitive way can be incredibly meaningful to women engaged in the recovery process. Many people in recovery typically experience some challenges with receiving evidence-based practice due to the lack of access to this specialized care. It is important to either provide these resources or offer referrals (Corrigan, Steiner, McCracken, Blaser, & Barr, 2001). Diverse interventions include but are not limited to the following:
• dialectical behavior therapy
• mindfulness-based stress reduction
• behavioral family therapy, peer specialists
• cognitive-behavioral therapy
• metacognitive therapy
• social skills training
• cognitive restructuring for trauma
• open dialogue approach
• supported employment
• supportive housing
• psychosocial interventions for alcohol and substance use disorders
• psychosocial interventions for weight management
• assertive community treatment
• psychodynamic psychotherapy.
(p. 40) Empirical evidence has found that these interventions, among others, are likely to help individuals in their wellness journey (Bellack, Mueser, Gingerich, & Agresta, 2013; Bergstrom et al., 2018; de Jong et al., 2019; Dixon et al., 2009; Dutton, Bermudez, Matas, Majid, & Myers, 2013; Johnson, et al., 2018; Kreyenbuhl, Buchanan, Dickerson, & Dixon, 2010; Lecomte, 2018; Linehan, 2014; Mueser & Glynn, 1995; Mueser et al., 2018; Rosenbaum, Alberdi, Haahr, Lindhardt, & Urferparnas, 2019). It is crucial to provide and offer these resources in ways that are not coercive. A forced approach is not likely to have positive outcomes and may further marginalize or retraumatize an individual.
Women in recovery can be encouraged to develop a positive sense of identity (Slade, 2009). Providers can help women make sense of their experience of what mental illness means to them as a person, without making assumptions about how they may see it. This offers the woman in recovery the psychological space to put this experience in context in her own life, develop personal responsibility, and build tools for coping. There are a number of messages that can be harmful, such as the idea that her life will be a certain, negative way; that mental illness means she is flawed; that she will not be able to pursue her dreams. However, with a hope-inspiring, nonjudgmental approach, much is possible.
It is important to engage women in conversations about how they uniquely experience the symptoms of their mental illness and any fluctuations related to their menstrual cycle. Women experience hormonal changes and concerns during breastfeeding or pregnancy. Prescribing should involve a careful assessment of the experiences of the individual woman in the context of her medication regimen, balanced with what the scientific literature recommends. Providers of psychotherapy and other team members such as peer specialists can amplify the woman’s voice as they conceptualize how best to communicate her needs to a prescriber. A holistic approach is recommended, including assessing the woman’s physical well-being and longevity (Brown et al., 1999; Chang et al., 2011). Holistic care includes support for a healthy diet, attending to substance use, smoking reduction, and implementing exercise. It is also vital to monitor challenges that may develop from medication effects such as metabolic syndrome, weight gain, increased prolactin levels, suicidality, akathisia, and other related concerns (Druss et al., 2018). Providers may also find it helpful to utilize the clinical worksheet located at the end of the chapter, “My Recovery Journey,” with women with SMI and others who may benefit.
A recovery-oriented perspective recognizes the value of developing meaning and supporting autonomy. Providers must take into consideration the unique biological differences among women with SMI and how they experience illness, wellness, and particular life experiences such as pregnancy and hormonal changes in order to provide recovery-oriented and gender-sensitive services. This recovery (p. 41) orientation will allow optimal clinical engagement and best serve women with SMI.
• Assess the woman’s experience of mental illness and make a supportive, therapeutic alliance that allows for processing of positive identity development.
• Avoid negative messages that the woman’s life is flawed due to her mental illness or that she cannot pursue her dreams. Rather, affirm her strengths and hold hope for her as she works through difficult experiences and strives to develop a life of meaning.
• Assess from a person-centered perspective what goals in life carry personal meaning and make these the center of direction for the therapeutic process. This includes taking medications, going to therapy appointments, or going to groups. Focus on supporting women in pursuing personally meaningful activities (e.g., earning a college degree, finding a partner, becoming a chef, learning to skateboard, or taking up knitting).
• In therapy, set the agenda together. This empowers a woman to feel that she is in the “driver’s seat” of what happens in therapy.
• Aim to support the woman in setting holistic goals that include physical wellness and spiritual wellness, in addition to traditional mental health goals. Doing this can help her advocate for herself with prescribers, team members, and natural supports.
• Conduct role plays and assertiveness training as needed to inspire the woman to pursue her goals and embrace her personal agency.
• Provide evidence-based practices, including interventions and resources, that will improve coping, wellness, identity development, hope, quality of life, and meaning. If specific interventions are not offered at your site, be creative about a referral process that can provide such service connection.
• Provide education about the fluctuating symptoms of mental illness and how woman may experience the effects and the effectiveness of any prescribed medications.
• Encourage the use of shared decision-making models on inter-professional and interdisciplinary teams.
• Avoid coercive or punitive forms of treatment, which may further disenfranchise a woman in recovery.
• Understand the therapy experience as more than a “fifty-minute hour” of talk therapy, but one that includes social justice practices of advocacy for the rights, legal support, housing, employment, and safety supports of a woman in recovery.
• Support the woman in recovery in developing and enhancing natural supports that provide fulfilling connection.
(p. 42) Discussion Questions
1. What are the different mechanisms in therapy that can help transfer the concept of hope to a woman in recovery when she feels hopeless? How does this differ based on varying social locations such as the woman’s socioeconomic status, intellectual level, employment history, housing status, and educational attainment?
2. How does one advocate for the provision of recovery-oriented care in a system that communicates negative messages to people with mental health problems, focusing on their symptoms, limitations, and poor prognoses? What resources or partners would be helpful to include in this process? What barriers to recovery-oriented care occur within the traditional mental health system?
3. What responsibility do you believe systems of care have in balancing psychotropic prescribing with the risk of health effects from medications? What tools do you think might be most helpful in considering the preferences, experiences, and goals of a woman in recovery as she thinks about communicating her views on taking medications with her team and/or prescriber?
4. What increased assessment experiences can systems of care develop so that they pay attention to the unique needs of every woman that they accept into treatment?
Break into two groups and discuss the following topics for fifteen minutes. Then share as an entire group. Assign a scribe to take notes and a reporter to share takeaway points from the discussion. As the two groups reconvene, discuss any differences or similarities that came up as a group and expand on those ideas.
1. How do you switch the therapeutic alignment with a treatment team on an inpatient unit that has been engaging with a patient from a pathologizing or “this is what is wrong with you” approach to a recovery-oriented approach? Consider how that shift may occur when working with these women:
• A woman who, ten years ago, killed her mother when she thought her mother was an alien but has not been violent since
• A woman from a well-off family who has been abandoned by the family and is now on public assistance
• A woman who has a history of trauma and starts to yell, between 9 and 11 every night, that someone is coming to beat her
• A woman who likes to garden and frequently waters the plants at the hospital, so that the janitor can’t keep track of how much water the plants are getting.
(p. 43) 2. During the process of recovery, individuals seek to enhance their autonomy, personal agency, and sense of control, which are vital to assuming responsibility and directing their recovery journey. How do you envision mental health systems getting in the way of this at times, and how can this be navigated in pursuit of a more recovery-consistent orientation? Consider different elements such as:
• Policies related to smoking
• How medications are prescribed
• Treatment engagement requisites (e.g., requirement to participate in groups, token economies)
• Choices in hospitalization.
3. Though systems of mental health care have improved in their ability to offer more trauma-informed care, there are still many procedures in the mental health system that are experienced as aversive or traumatic. What are your ideas for helping shape the field in relation to the use of the following:
• Level systems on an inpatient unit to gain privileges
• Privacy in hospital settings
• How treatment teams discuss patient information and how rounds are carried out (p. 44)