ORIGINAL RESEARCH
Decreasing the stigma burden of chronic pain Diane B. Monsivais, PhD (Assistant Professor) School of Nursing, The University of Texas at El Paso, El Paso, Texas
Keywords Culture; health promotion; qualitative analysis; disparities. Correspondence Correspondence Diane B. Monsivais, PhD, School of Nursing, The University of Texas at El Paso, El Paso, Texas 79968. Tel: 915-747-8209; Fax: 915-747-8295; E-mail: [email protected] Received: December 2012; accepted: December 2012 doi: 10.1111/1745-7599.12010
Abstract Purpose: To describe stigmatizing experiences in a group of MexicanAmerican women with chronic pain and provide clinical implications for decreasing stigma. Data sources: This focused ethnographic study derived data from semistructured interviews, participant observations, and fieldwork. Participants provided detailed descriptions of communicating about chronic pain symptoms, treatment, and management. The sample consisted of 15 English-speaking Mexican-American women 21–65 years old (average age = 45.6 years) who had nonmalignant chronic pain symptoms for 1 year or more. Conclusions: The cultural and social norm in the United States is the expectation for objective evidence (such as an injury) to be present if a pain condition exists. In this study, this norm created suspicion and subsequent stigmatization on the part of family, co-workers, and even those with the pain syndromes, that the painful condition was imagined instead of real. Implications for practice: To decrease stigmatization of chronic pain, providers must understand their own misconceptions about chronic pain, possess the skills and resources to access and use the highest level of practice evidence available, and become an advocate for improved pain care at local, state, and national levels.
Background Chronic pain costs between 560 and 635 billion dollars each year, affects at least 100 million adults in the United States, and is considered a “significant public health problem” (Institute of Medicine [IOM], 2011). Chronic pain may be defined as “persistent pain, which can be either continuous or recurrent and of sufficient duration and intensity to adversely affect a patient’s well-being, level of function, and quality of life” (Institute for Clinical Systems Improvement [ICSI], 2011). As a chronic condition, chronic pain poses unique challenges both to the person with the condition and for the providers who treat it. Many of those challenges are related to the stigmatization of chronic pain. Goffman’s (1963) classic work describes stigma as an attribute that is deeply discrediting given a particular set of circumstances and relationships. The cultural and social norms of the United States and its healthcare system provide the circumstances and relationships that stigmatize chronic pain. These cultural and social norms include the expectation for objective evidence of a specific
cause (such as an injury) if a pain condition exists, and improvement when treated with the traditional methods of Western medicine. Therefore, pain’s invisibility and resistance to traditional models of treatment contrast highly with these norms. Additionally, opioid use and difficulty understanding the mind–body connection provide further challenges. Use of opioids is generally viewed negatively in United States. And, although a biopsychosocial model of care is the gold standard to which most practitioners aspire, integrated care of mind and body is not a routine occurrence in the current system. Chronic pain and effective treatment for it, therefore, contrasts highly with U.S. social and cultural norms. Such contrast brings with it stigma toward the condition and persons who have the condition (Bendelow & Williams, 1995; Goldberg, 2010; Jackson, 1992, 2000, 2005). The purpose of this article is to present stigmatizing experiences shared by a group of Mexican-American women with chronic pain. The findings regarding stigma experiences are part of a larger parent study, which used a focused ethnographic approach (interview data, participant observations, and fieldwork) in which participants
C 2013 The Author(s) Journal of the American Association of Nurse Practitioners 25 (2013) 551–556
C 2013 American Association of Nurse Practitioners
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provided detailed descriptions of communicating about chronic pain symptoms, treatment, and management. These descriptions were used to create a set of cultural constructions of chronic pain in Mexican-American women (Monsivais, 2008). Cultural constructions are defined as ways groups of people organize their beliefs and interpretations about the meaning of a shared experience (Patton, 2002). The beliefs and interpretations related to the meaning of the stigmatizing experiences involved with chronic pain are presented.
Methods The sample consisted of 15 English-speaking MexicanAmerican women 21–65 years old (average age = 45.6 years) living in the El Paso, Texas area who had nonmalignant chronic pain symptoms for 1 year or more. Patients were recruited from a pain management clinic and fibromyalgia support group for interviews lasting 1–3 h. Data were collected using field notes and a semistructured interview guide. The interviews were transcribed verbatim and analyzed according to Miles and Huberman’s (1994) dynamic, recursive data analysis process. Institutional Review Board approval was obtained from The University of Texas Health Science Center at Houston and The University of Texas at El Paso.
Results Stigmatizing experiences were first separated into broad categories. The first category was the acceptability of taking pain medications. Findings showed pain medication is linked to numerous negative associations such as addiction, aging, and dependency. These negative associations became entwined with the identity of the person using the pain medication, and heavily influenced how the medication was used. These findings have been reported earlier (Monsivais & Engebretson, 2012). The second category related to carrying out role functions and communicating within the family and in the workplace and is the focus of this article.
Role functions and communication within the family Because of pain, participants were often unable to fulfill role functions within the family. Participation in chores, errands, childcare, and work-related roles were often limited because of pain, and participants often preferred to be silent about the problem rather than reaching out for help. Because a woman’s identity is often tied to carrying out gendered family roles, her identity was at risk because of the invisible illness. Participants often faced disbelief that the pain was “real,” which brings up the moral 552
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question about intent, and involves a person’s character. When a problem is seen as a problem of the mind (voluntary) instead of the body (involuntary), the person’s reasons for not participating in activities are made suspect by an invisible illness. When someone looks fine, others think there is no excuse for not participating. This social construct reflects values, beliefs, and norms of society and creates a stigmatized condition for those with nonvisible or bodily pain. Others may perceive that those without a visible condition are simply imagining the pain, and if the pain sufferers were mentally “tough enough” they could overcome the painful symptoms. One participant commented that her mother was suspicious that fibromyalgia could be the cause of the participant’s memory problems. The participant said of a discussion with her mother, “Mom, do you remember when I told you that I’m foggy because of my illness, I’m not foggy because I’m being absentminded, but it is an actual symptom?” and the mother replied, “okay, if you say so.” This discounting of her daughter’s description of fibromyalgia created a source of frustration for the daughter because her mother did not believe the memory problem was tied to the illness. In contrast, when women participated in activities in order to distract themselves from the pain, family members also questioned whether the pain was really occurring. One participant said her husband asked, “If you are having all this pain how come you want to go to the casino?” The participant stated she forgot her pains in the casino because she felt like she was in another world. Activities that bring enjoyment or fulfillment are often excellent ways to create a distraction from painful syndromes, and many pain management guidelines suggest practitioners incorporate the patient’s suggestions for preferred activities into the plan of care. Family members sometimes find the patient’s ability to carry out activities during pain contradictory and do not understand that the activity may provide a welcome distraction with resulting relief from pain. Blaming the person experiencing pain for creating the pain was another way of disregarding the chronic pain condition. One young woman stated, “He [speaking of her husband] doesn’t know how to sort of take care of me, you know he will check on me, but it always seemed like ‘well what did you do to trigger this? Did you overdo? What were you doing?’” Her husband does not believe that the chronic pain syndrome exists, and looks for a cause for the symptoms that might have been under the woman’s control. Being considered lazy is in conflict with the self-concept of being hard working and capable and, therefore, was a distressful idea to the participants. Some women wanted
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to avoid being around family when the pain was present, removing them from participation in normal activities and their roles, so that others would not judge them for not participating fully. “Sometimes I just keep away from them . . . . I try not to go to where they are if I’m in pain because sometimes I think they won’t understand.” She went on to explain she does not want people to think she may be asking for them to do her share of the work, for fear that they will think she is lazy. Because they may not really believe she is ill, others only see someone who wants to get out of work. In addition, the individual as a contributing member of the family unit would be letting down the family unit by not contributing her fair share and maintaining the normative order of the family. Many of the participants expressed worry about being thought a hypochondriac, and having others view them as complaining about nothing. “I think my family thought I was faking it and I started feeling like I better not even tell anybody because I feel like I’m faking it . . . . I started to get ashamed of it like [it was] psychological . . . ” The ambiguity of the diagnosis makes many persons with chronic pain even question their own symptoms. When expectations about abilities exceeded the woman’s capabilities, problems arose because of the family’s lack of understanding about the pain-imposed limitations. For one participant, childcare had the potential to be unrealistic. One participant stated of her 11-pound infant granddaughter, I couldn’t handle her. I had to tell my granddaughter to help me with her. I couldn’t believe that I couldn’t pick her up like I used to pick [up] my own kids. And I saw that, it is not the same anymore. So it took me two days before I felt the pain in my body for all that lifting up the baby and trying to help her, it takes for me at least one day or two days then I will feel my body that really comes down with the worst pain. For me, doing all that stresses me out by helping out doing things.
Expectations from her family exceeded her capabilities for lifting; she was not seen as a person with a chronic painful condition that limited function. The diagnosis is ambiguous, with ill-defined characteristics and limitations. This makes it difficult for family members to know what type of activities the person with pain is able to participate in, and they may unknowingly hold unrealistic expectations unless there is clear communication regarding the abilities of the person with pain and the family. Another participant expressed distress over the fact her family did not seem to care that she was in pain, and the noncaring attitude made her feel delegitimized. She had tried hard to fulfill her social role in the home, yet no one seemed to give her credit or support for doing so while in pain.
Decreasing the stigma burden of chronic pain
The amazing thing is that I’ve always taken care of everybody and taken care of everybody’s problems to the point that everybody expected everything of me and I wouldn’t stop. I was super lady so I couldn’t let it beat me. And I learned to live with the pain. I had my face hurt, I had a headache for three years and I was very tender. I couldn’t touch my face, and even for people to hug me I would ask them to be gentle because I couldn’t even turn. I was walking around stiff and my family didn’t notice, they didn’t pay attention, because I got things done. Only I knew that it was dirty behind the china cabinet, only I knew that under the furniture I haven’t vacuumed, or that my closets weren’t clean or you know, the deep cleaning, only I knew that was dirty and still to this day I can’t do any of that anymore.
Social roles are the reason that she feels the need to keep up with housework. Her family does not recognize her illness by acknowledging limitations or offering assistance. The invisible nature of chronic pain caused distress during family interactions. The social and cultural constructions about chronic pain involved a sense of having one’s character questioned. If the problem is not visible and physical, the assumption that it is therefore mental or psychological (and therefore under the person’s control) was present for the participants.
Role functions and communication within the workplace Overwhelmingly, participants stated they did not discuss pain with co-workers. Participants believed that disclosing their pain would categorize them as being different. Talking about pain might make others suspect the person with pain was not able to do the job, or make others think the person with pain was trying to get out of work. In addition, the attitude from co-workers who were doubtful that the pain was real led to embarrassment, so there was a need to keep quiet. This relates to the idea of being labeled a faker (delegitimizes pain problem and leads to more stress) or lazy (which counters one’s self-concept as a hardworking and capable person). “Because according to everybody it’s all in my mind, I’m the one making it up. When I miss work . . . I say “oh I had a cold” because I can’t tell them ’my back is hurting.’ I was embarrassed.” Work experiences while trying to maintain an outward appearance of having no pain led to anger and feeling underappreciated at work. Negative feelings were evident in the participant who did not feel her efforts were appreciated at work. I just know that when I work more . . . that is when I have more pain. And actually sometimes I feel that it is not going to be appreciated when I’m getting older and the pain is going to be worse. But I care about my job and I like 553
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it. Sometimes I feel that they take advantage. You know because if I don’t stay late sometimes they get upset.
This participant felt underappreciated and taken advantage of for trying harder with pain and not being recognized for doing so. The tension between not wanting to be considered “different” by disclosing the painful syndrome, and wanting recognition for the extra effort it took to work while in pain and possible future consequences such as permanent injury and disability created a conflict for the participant. Other participants relayed experiences of difficulty with being allowed time off after an injury and difficulty filing claims with the Human Resources Department in their organizations. This may reflect workplace policies, which further stigmatize employees with chronic pain syndromes. Maintaining an image of a healthy self was paramount; the thought of being considered different led participants to remain silent about needing extra support and assistance at work, which would have made it easier for them to keep functioning with the pain syndrome. The gendered female social role makes communicating the need for assistance difficult. Women remained silent about the pain in order to maintain their identities as independent, truthful, and hardworking women. The silence meant participants did not receive appropriate supportive resources and relationships for the illness, which then often led to anger and frustration. Findings showed that the invisible nature of chronic pain caused distress. The social and cultural constructions about chronic pain involved a sense of having one’s character questioned. If the problem was not visible and physical, the overriding assumption was that it was therefore mental or psychological (and therefore under the person’s control). The continued cultural stigma of mental illness is shown by the comment of one who said “I was ashamed, like it was psychological.”
Discussion Evident in both the home and workplace is the overarching cultural and social norm of the expectation for objective evidence of a specific cause (such as an injury) to be present if a pain condition exists. This norm created suspicion on the part of family, co-workers, and even among those with the pain syndromes, that the painful condition was imagined instead of real. The family is the hub of the social structure in the Mexican-American culture, with the woman typically providing both practical and emotional support for both immediate and extended family members. While family dynamics have changed as women have entered the 554
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workforce, the idea of Mexican-American women as selfsacrificing in order to create a cohesive family remains strong according to work by Eggenberger, Grassley, and Restrepo (2006). The woman’s gendered role often includes putting the needs of others before her own. Because childcare, housework, and food preparation are usually ongoing, never-ending activities, taking care of self for many women is simply not part of their agenda. Putting her own needs first, or needing help to carry out her role, can be distressing if she does not have the support to do so. Richardson, Ong, and Sim (2007) explored the impact of living with chronic pain within the family unit. Pain levels vary considerably even within the same day, meaning the type and extent of support offered must be on ever-changing levels. Responding at the appropriate level takes constant negotiation between the person with pain and those he or she interacts with. There is a great deal of emotional work involved in interpreting what others need and responding to them appropriately, and ongoing practice, skill, and patience to be successful. Although the women tended to maintain responsibility for the housework, they needed practical assistance to carry it out. This is reflected in some of the participants’ comments that family members “just knew” when they were having pain, and they did not have to explicitly say anything. Such needed support, however, tended to be variable and was sometimes limited by the availability of family members. Social roles become more visible when disrupted by conditions such as chronic pain. Given that many cultures have similar gender-based constructions, the findings may be applicable across a wide variety of populations. The interpretive clinical ethnographic approach used in this study illuminates tacit beliefs and values underlying much of human behavior (which are often taken for granted). This is critically important when the beliefs and values may be increasing health .inequalities. Chronic pain is an ambiguous diagnosis with unclear boundaries of limitations it imposes, and those limitations may decrease or increase dramatically over the course of a short period of time. Core principles from the ICSI (2011) pain management guidelines include the importance of self-management and participation in all aspects of the plan of care. Clear communication is one important self-management strategy, and patients often must be coached to learn improved communication skills. They then are able to educate others about their condition, and describe the level of support they need. The importance of communication is critical because pain-related adjustment is often related to the quality of supportive relationships (ICSI, 2011, p. 18).
Decreasing the stigma burden of chronic pain
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Participants in this study were subject to stigmatization primarily related to the invisibility of pain. Chronic pain is a complex condition that needs expert multidisciplinary care for the most effective treatment outcomes. Stigmatization complicates and prolongs effective outcomes. Because this study is limited to a specific population it cannot be generalized to larger populations. However, the findings do correlate closely with an extensive body of research from around the world related to stigma and chronic pain, and gender-based role construction is present across and wide variety of cultures.
Implications for clinicians 1. Recognize the need for overall knowledge and attitudes change about chronic pain in the United States, and start with individual providers [self]. Stigma about chronic pain is rooted in deep cultural and social norms, and healthcare providers have been an integral part of those cultural and social norms. Therefore, they often have their own misconceptions about chronic pain and its treatment. For this reason, each provider must be willing to access and use the most upto-date treatment guidelines, then reflect on his or her own biases that may create barriers to carrying out the guidelines. A realistic assessment of one’s own knowledge and attitudes toward chronic pain is a critical part of the process. If needed, action can then be taken to rectify the gaps in knowledge and address the attitudes that may hinder effective patient care. 2. Promote and enable self-management of pain using highest level of evidence. The IOM’s publication Relieving Pain in America. A Blueprint for Transforming Prevention, Care, Education, and Research (2011) calls for promoting and enabling selfmanagement of pain using highest levels of evidence. Highest levels of evidence related to all areas of care can be accessed in clinical practice guidelines such as Assessment and management of chronic pain (ICSI, 2011; http://www.guidelines.gov). Many of the participant examples uncovered in this research might have benefitted from a provider who facilitated improved communication about the condition and the type of support the person needed. Open communication with providers, family, and friends is critical to successful rehabilitation from chronic pain. Mutual goal setting during the planning and intervention process for best practices in pain management could incorporate discussion of effective ways to communicate about pain and negotiate supportive relationships.
3. System-wide changes are necessary in conjunction with provider-level best practices. Significant barriers to care exist at societal, organizational, provider, and patient levels (IOM, 2011). In fact, many known best practices are constrained by the current system. For example, allowing patients to see a dedicated care provider who has expertise in chronic pain and coordinated multidisciplinary teams are essential for successful treatment of chronic pain (ICSI, 2011). Yet, too often patients do not have access to this option either because of insurance or geographic constraints. Patients need healthcare visits that allow time for addressing specific concerns, along with education and counseling. However, the lack of reimbursement for comprehensive pain management drastically hinders effective care because resources to carry out the protocol are generally unavailable. These system-wide changes can be facilitated by practitioners who act as advocates for improved pain care at the local, state, and national level. While recognizing that the problems inherent in treating chronic pain need national attention, it is important to focus on key practice points that individual providers are able to do. These points include staying updated on best practices, understanding one’s own biases and attempting to address any that hinder patient care, and becoming an advocate for improved pain care at the local, state, and national level. These actions will decrease the stigmatization burden that currently accompanies the chronic pain condition, and concurrently may improve outcomes.
References Bendelow, G. A., & Williams, S. J. (1995). Transcending the dualisms: Towards a sociology of pain. Sociology of Health and Illness, 17(2), 139–165. Eggenberger, S. K., Grassley, J., & Restrepo, E. (2006). Culturally competent nursing care: Listening to the voices of Mexican-American women. Online Journal of Issues in Nursing, 11(3), 7. Goffman, E. (1963). Stigma. Notes on the management of spoiled identity. New York: Simon and Schuster. Goldberg, D. S. (2010). Job and the stigmatization of chronic pain. Perspectives in Biology and Medicine, 53(3), 425–438. Institute for Clinical Systems Improvement (ICSI). (2011). Assessment and management of chronic pain. Bloomington, MN: Institute for Clinical Systems Improvement (ICSI). Retrieved from National Guidelines Clearinghouse at www.ngc.gov. Institute of Medicine (IOM). (2011). Relieving pain in America. A blueprint for transforming prevention, care, education, and research. Washington, DC: The National Academies Press. Retrieved from http://www.nap.edu/openbook.php?record id=13172. Jackson, J. E. (1992). “After a while no one believes you”: Real and unreal chronic pain. In Good M.D., Brodwin P.E., Good B.J. & Kleinman A. (Eds.), Pain as human experience: An anthropological perspective (pp. 138–168). Berkeley: University of California Press. Jackson, J. E. (2000). “Camp pain”: Talking with chronic pain patients. Philadelphia: University of Pennsylvania Press. Jackson, J. E. (2005). Stigma, liminality, and chronic pain: Mind-body borderlands. American Ethnologist, 32(3), 332–353.
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Miles, M. B., & Huberman, A. M. (1994). Qualitative data analysis: An expanded sourcebook (2nd ed.). Thousand Oaks: Sage Publications. Monsivais, D. B. (2008). Understanding cultural constructions of chronic pain in Mexican-American women (Paper AAT3362677). Texas Medical Center Dissertations via ProQuest Digital Dissertations. Monsivais, D., & Engebretson, J. (2012). “I’m just not that sick.” Pain medication and identity in Mexican American women
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with chronic pain. Journal of Holistic Nursing, 30(3), 188– 194. Patton, M. Q. (2002). Qualitative research & evaluation methods (3rd ed.). Thousand Oaks, CA: Sage Publications. Richardson, J. C., Ong, B. N., & Sim, J. (2007). Experiencing chronic widespread pain in a family context: Giving and receiving practical and emotional support. Sociology of Health and Illness, 29(3), 347–365.
Decreasing the stigma burden of chronic pain Diane B. Monsivais, PhD (Assistant Professor) School of Nursing, The University of Texas at El Paso, El Paso, Texas
Keywords Culture; health promotion; qualitative analysis; disparities. Correspondence Correspondence Diane B. Monsivais, PhD, School of Nursing, The University of Texas at El Paso, El Paso, Texas 79968. Tel: 915-747-8209; Fax: 915-747-8295; E-mail: [email protected] Received: December 2012; accepted: December 2012 doi: 10.1111/1745-7599.12010
Abstract Purpose: To describe stigmatizing experiences in a group of MexicanAmerican women with chronic pain and provide clinical implications for decreasing stigma. Data sources: This focused ethnographic study derived data from semistructured interviews, participant observations, and fieldwork. Participants provided detailed descriptions of communicating about chronic pain symptoms, treatment, and management. The sample consisted of 15 English-speaking Mexican-American women 21–65 years old (average age = 45.6 years) who had nonmalignant chronic pain symptoms for 1 year or more. Conclusions: The cultural and social norm in the United States is the expectation for objective evidence (such as an injury) to be present if a pain condition exists. In this study, this norm created suspicion and subsequent stigmatization on the part of family, co-workers, and even those with the pain syndromes, that the painful condition was imagined instead of real. Implications for practice: To decrease stigmatization of chronic pain, providers must understand their own misconceptions about chronic pain, possess the skills and resources to access and use the highest level of practice evidence available, and become an advocate for improved pain care at local, state, and national levels.
Background Chronic pain costs between 560 and 635 billion dollars each year, affects at least 100 million adults in the United States, and is considered a “significant public health problem” (Institute of Medicine [IOM], 2011). Chronic pain may be defined as “persistent pain, which can be either continuous or recurrent and of sufficient duration and intensity to adversely affect a patient’s well-being, level of function, and quality of life” (Institute for Clinical Systems Improvement [ICSI], 2011). As a chronic condition, chronic pain poses unique challenges both to the person with the condition and for the providers who treat it. Many of those challenges are related to the stigmatization of chronic pain. Goffman’s (1963) classic work describes stigma as an attribute that is deeply discrediting given a particular set of circumstances and relationships. The cultural and social norms of the United States and its healthcare system provide the circumstances and relationships that stigmatize chronic pain. These cultural and social norms include the expectation for objective evidence of a specific
cause (such as an injury) if a pain condition exists, and improvement when treated with the traditional methods of Western medicine. Therefore, pain’s invisibility and resistance to traditional models of treatment contrast highly with these norms. Additionally, opioid use and difficulty understanding the mind–body connection provide further challenges. Use of opioids is generally viewed negatively in United States. And, although a biopsychosocial model of care is the gold standard to which most practitioners aspire, integrated care of mind and body is not a routine occurrence in the current system. Chronic pain and effective treatment for it, therefore, contrasts highly with U.S. social and cultural norms. Such contrast brings with it stigma toward the condition and persons who have the condition (Bendelow & Williams, 1995; Goldberg, 2010; Jackson, 1992, 2000, 2005). The purpose of this article is to present stigmatizing experiences shared by a group of Mexican-American women with chronic pain. The findings regarding stigma experiences are part of a larger parent study, which used a focused ethnographic approach (interview data, participant observations, and fieldwork) in which participants
C 2013 The Author(s) Journal of the American Association of Nurse Practitioners 25 (2013) 551–556
C 2013 American Association of Nurse Practitioners
551
Decreasing the stigma burden of chronic pain
provided detailed descriptions of communicating about chronic pain symptoms, treatment, and management. These descriptions were used to create a set of cultural constructions of chronic pain in Mexican-American women (Monsivais, 2008). Cultural constructions are defined as ways groups of people organize their beliefs and interpretations about the meaning of a shared experience (Patton, 2002). The beliefs and interpretations related to the meaning of the stigmatizing experiences involved with chronic pain are presented.
Methods The sample consisted of 15 English-speaking MexicanAmerican women 21–65 years old (average age = 45.6 years) living in the El Paso, Texas area who had nonmalignant chronic pain symptoms for 1 year or more. Patients were recruited from a pain management clinic and fibromyalgia support group for interviews lasting 1–3 h. Data were collected using field notes and a semistructured interview guide. The interviews were transcribed verbatim and analyzed according to Miles and Huberman’s (1994) dynamic, recursive data analysis process. Institutional Review Board approval was obtained from The University of Texas Health Science Center at Houston and The University of Texas at El Paso.
Results Stigmatizing experiences were first separated into broad categories. The first category was the acceptability of taking pain medications. Findings showed pain medication is linked to numerous negative associations such as addiction, aging, and dependency. These negative associations became entwined with the identity of the person using the pain medication, and heavily influenced how the medication was used. These findings have been reported earlier (Monsivais & Engebretson, 2012). The second category related to carrying out role functions and communicating within the family and in the workplace and is the focus of this article.
Role functions and communication within the family Because of pain, participants were often unable to fulfill role functions within the family. Participation in chores, errands, childcare, and work-related roles were often limited because of pain, and participants often preferred to be silent about the problem rather than reaching out for help. Because a woman’s identity is often tied to carrying out gendered family roles, her identity was at risk because of the invisible illness. Participants often faced disbelief that the pain was “real,” which brings up the moral 552
D. B. Monsivais
question about intent, and involves a person’s character. When a problem is seen as a problem of the mind (voluntary) instead of the body (involuntary), the person’s reasons for not participating in activities are made suspect by an invisible illness. When someone looks fine, others think there is no excuse for not participating. This social construct reflects values, beliefs, and norms of society and creates a stigmatized condition for those with nonvisible or bodily pain. Others may perceive that those without a visible condition are simply imagining the pain, and if the pain sufferers were mentally “tough enough” they could overcome the painful symptoms. One participant commented that her mother was suspicious that fibromyalgia could be the cause of the participant’s memory problems. The participant said of a discussion with her mother, “Mom, do you remember when I told you that I’m foggy because of my illness, I’m not foggy because I’m being absentminded, but it is an actual symptom?” and the mother replied, “okay, if you say so.” This discounting of her daughter’s description of fibromyalgia created a source of frustration for the daughter because her mother did not believe the memory problem was tied to the illness. In contrast, when women participated in activities in order to distract themselves from the pain, family members also questioned whether the pain was really occurring. One participant said her husband asked, “If you are having all this pain how come you want to go to the casino?” The participant stated she forgot her pains in the casino because she felt like she was in another world. Activities that bring enjoyment or fulfillment are often excellent ways to create a distraction from painful syndromes, and many pain management guidelines suggest practitioners incorporate the patient’s suggestions for preferred activities into the plan of care. Family members sometimes find the patient’s ability to carry out activities during pain contradictory and do not understand that the activity may provide a welcome distraction with resulting relief from pain. Blaming the person experiencing pain for creating the pain was another way of disregarding the chronic pain condition. One young woman stated, “He [speaking of her husband] doesn’t know how to sort of take care of me, you know he will check on me, but it always seemed like ‘well what did you do to trigger this? Did you overdo? What were you doing?’” Her husband does not believe that the chronic pain syndrome exists, and looks for a cause for the symptoms that might have been under the woman’s control. Being considered lazy is in conflict with the self-concept of being hard working and capable and, therefore, was a distressful idea to the participants. Some women wanted
D. B. Monsivais
to avoid being around family when the pain was present, removing them from participation in normal activities and their roles, so that others would not judge them for not participating fully. “Sometimes I just keep away from them . . . . I try not to go to where they are if I’m in pain because sometimes I think they won’t understand.” She went on to explain she does not want people to think she may be asking for them to do her share of the work, for fear that they will think she is lazy. Because they may not really believe she is ill, others only see someone who wants to get out of work. In addition, the individual as a contributing member of the family unit would be letting down the family unit by not contributing her fair share and maintaining the normative order of the family. Many of the participants expressed worry about being thought a hypochondriac, and having others view them as complaining about nothing. “I think my family thought I was faking it and I started feeling like I better not even tell anybody because I feel like I’m faking it . . . . I started to get ashamed of it like [it was] psychological . . . ” The ambiguity of the diagnosis makes many persons with chronic pain even question their own symptoms. When expectations about abilities exceeded the woman’s capabilities, problems arose because of the family’s lack of understanding about the pain-imposed limitations. For one participant, childcare had the potential to be unrealistic. One participant stated of her 11-pound infant granddaughter, I couldn’t handle her. I had to tell my granddaughter to help me with her. I couldn’t believe that I couldn’t pick her up like I used to pick [up] my own kids. And I saw that, it is not the same anymore. So it took me two days before I felt the pain in my body for all that lifting up the baby and trying to help her, it takes for me at least one day or two days then I will feel my body that really comes down with the worst pain. For me, doing all that stresses me out by helping out doing things.
Expectations from her family exceeded her capabilities for lifting; she was not seen as a person with a chronic painful condition that limited function. The diagnosis is ambiguous, with ill-defined characteristics and limitations. This makes it difficult for family members to know what type of activities the person with pain is able to participate in, and they may unknowingly hold unrealistic expectations unless there is clear communication regarding the abilities of the person with pain and the family. Another participant expressed distress over the fact her family did not seem to care that she was in pain, and the noncaring attitude made her feel delegitimized. She had tried hard to fulfill her social role in the home, yet no one seemed to give her credit or support for doing so while in pain.
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The amazing thing is that I’ve always taken care of everybody and taken care of everybody’s problems to the point that everybody expected everything of me and I wouldn’t stop. I was super lady so I couldn’t let it beat me. And I learned to live with the pain. I had my face hurt, I had a headache for three years and I was very tender. I couldn’t touch my face, and even for people to hug me I would ask them to be gentle because I couldn’t even turn. I was walking around stiff and my family didn’t notice, they didn’t pay attention, because I got things done. Only I knew that it was dirty behind the china cabinet, only I knew that under the furniture I haven’t vacuumed, or that my closets weren’t clean or you know, the deep cleaning, only I knew that was dirty and still to this day I can’t do any of that anymore.
Social roles are the reason that she feels the need to keep up with housework. Her family does not recognize her illness by acknowledging limitations or offering assistance. The invisible nature of chronic pain caused distress during family interactions. The social and cultural constructions about chronic pain involved a sense of having one’s character questioned. If the problem is not visible and physical, the assumption that it is therefore mental or psychological (and therefore under the person’s control) was present for the participants.
Role functions and communication within the workplace Overwhelmingly, participants stated they did not discuss pain with co-workers. Participants believed that disclosing their pain would categorize them as being different. Talking about pain might make others suspect the person with pain was not able to do the job, or make others think the person with pain was trying to get out of work. In addition, the attitude from co-workers who were doubtful that the pain was real led to embarrassment, so there was a need to keep quiet. This relates to the idea of being labeled a faker (delegitimizes pain problem and leads to more stress) or lazy (which counters one’s self-concept as a hardworking and capable person). “Because according to everybody it’s all in my mind, I’m the one making it up. When I miss work . . . I say “oh I had a cold” because I can’t tell them ’my back is hurting.’ I was embarrassed.” Work experiences while trying to maintain an outward appearance of having no pain led to anger and feeling underappreciated at work. Negative feelings were evident in the participant who did not feel her efforts were appreciated at work. I just know that when I work more . . . that is when I have more pain. And actually sometimes I feel that it is not going to be appreciated when I’m getting older and the pain is going to be worse. But I care about my job and I like 553
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it. Sometimes I feel that they take advantage. You know because if I don’t stay late sometimes they get upset.
This participant felt underappreciated and taken advantage of for trying harder with pain and not being recognized for doing so. The tension between not wanting to be considered “different” by disclosing the painful syndrome, and wanting recognition for the extra effort it took to work while in pain and possible future consequences such as permanent injury and disability created a conflict for the participant. Other participants relayed experiences of difficulty with being allowed time off after an injury and difficulty filing claims with the Human Resources Department in their organizations. This may reflect workplace policies, which further stigmatize employees with chronic pain syndromes. Maintaining an image of a healthy self was paramount; the thought of being considered different led participants to remain silent about needing extra support and assistance at work, which would have made it easier for them to keep functioning with the pain syndrome. The gendered female social role makes communicating the need for assistance difficult. Women remained silent about the pain in order to maintain their identities as independent, truthful, and hardworking women. The silence meant participants did not receive appropriate supportive resources and relationships for the illness, which then often led to anger and frustration. Findings showed that the invisible nature of chronic pain caused distress. The social and cultural constructions about chronic pain involved a sense of having one’s character questioned. If the problem was not visible and physical, the overriding assumption was that it was therefore mental or psychological (and therefore under the person’s control). The continued cultural stigma of mental illness is shown by the comment of one who said “I was ashamed, like it was psychological.”
Discussion Evident in both the home and workplace is the overarching cultural and social norm of the expectation for objective evidence of a specific cause (such as an injury) to be present if a pain condition exists. This norm created suspicion on the part of family, co-workers, and even among those with the pain syndromes, that the painful condition was imagined instead of real. The family is the hub of the social structure in the Mexican-American culture, with the woman typically providing both practical and emotional support for both immediate and extended family members. While family dynamics have changed as women have entered the 554
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workforce, the idea of Mexican-American women as selfsacrificing in order to create a cohesive family remains strong according to work by Eggenberger, Grassley, and Restrepo (2006). The woman’s gendered role often includes putting the needs of others before her own. Because childcare, housework, and food preparation are usually ongoing, never-ending activities, taking care of self for many women is simply not part of their agenda. Putting her own needs first, or needing help to carry out her role, can be distressing if she does not have the support to do so. Richardson, Ong, and Sim (2007) explored the impact of living with chronic pain within the family unit. Pain levels vary considerably even within the same day, meaning the type and extent of support offered must be on ever-changing levels. Responding at the appropriate level takes constant negotiation between the person with pain and those he or she interacts with. There is a great deal of emotional work involved in interpreting what others need and responding to them appropriately, and ongoing practice, skill, and patience to be successful. Although the women tended to maintain responsibility for the housework, they needed practical assistance to carry it out. This is reflected in some of the participants’ comments that family members “just knew” when they were having pain, and they did not have to explicitly say anything. Such needed support, however, tended to be variable and was sometimes limited by the availability of family members. Social roles become more visible when disrupted by conditions such as chronic pain. Given that many cultures have similar gender-based constructions, the findings may be applicable across a wide variety of populations. The interpretive clinical ethnographic approach used in this study illuminates tacit beliefs and values underlying much of human behavior (which are often taken for granted). This is critically important when the beliefs and values may be increasing health .inequalities. Chronic pain is an ambiguous diagnosis with unclear boundaries of limitations it imposes, and those limitations may decrease or increase dramatically over the course of a short period of time. Core principles from the ICSI (2011) pain management guidelines include the importance of self-management and participation in all aspects of the plan of care. Clear communication is one important self-management strategy, and patients often must be coached to learn improved communication skills. They then are able to educate others about their condition, and describe the level of support they need. The importance of communication is critical because pain-related adjustment is often related to the quality of supportive relationships (ICSI, 2011, p. 18).
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Participants in this study were subject to stigmatization primarily related to the invisibility of pain. Chronic pain is a complex condition that needs expert multidisciplinary care for the most effective treatment outcomes. Stigmatization complicates and prolongs effective outcomes. Because this study is limited to a specific population it cannot be generalized to larger populations. However, the findings do correlate closely with an extensive body of research from around the world related to stigma and chronic pain, and gender-based role construction is present across and wide variety of cultures.
Implications for clinicians 1. Recognize the need for overall knowledge and attitudes change about chronic pain in the United States, and start with individual providers [self]. Stigma about chronic pain is rooted in deep cultural and social norms, and healthcare providers have been an integral part of those cultural and social norms. Therefore, they often have their own misconceptions about chronic pain and its treatment. For this reason, each provider must be willing to access and use the most upto-date treatment guidelines, then reflect on his or her own biases that may create barriers to carrying out the guidelines. A realistic assessment of one’s own knowledge and attitudes toward chronic pain is a critical part of the process. If needed, action can then be taken to rectify the gaps in knowledge and address the attitudes that may hinder effective patient care. 2. Promote and enable self-management of pain using highest level of evidence. The IOM’s publication Relieving Pain in America. A Blueprint for Transforming Prevention, Care, Education, and Research (2011) calls for promoting and enabling selfmanagement of pain using highest levels of evidence. Highest levels of evidence related to all areas of care can be accessed in clinical practice guidelines such as Assessment and management of chronic pain (ICSI, 2011; http://www.guidelines.gov). Many of the participant examples uncovered in this research might have benefitted from a provider who facilitated improved communication about the condition and the type of support the person needed. Open communication with providers, family, and friends is critical to successful rehabilitation from chronic pain. Mutual goal setting during the planning and intervention process for best practices in pain management could incorporate discussion of effective ways to communicate about pain and negotiate supportive relationships.
3. System-wide changes are necessary in conjunction with provider-level best practices. Significant barriers to care exist at societal, organizational, provider, and patient levels (IOM, 2011). In fact, many known best practices are constrained by the current system. For example, allowing patients to see a dedicated care provider who has expertise in chronic pain and coordinated multidisciplinary teams are essential for successful treatment of chronic pain (ICSI, 2011). Yet, too often patients do not have access to this option either because of insurance or geographic constraints. Patients need healthcare visits that allow time for addressing specific concerns, along with education and counseling. However, the lack of reimbursement for comprehensive pain management drastically hinders effective care because resources to carry out the protocol are generally unavailable. These system-wide changes can be facilitated by practitioners who act as advocates for improved pain care at the local, state, and national level. While recognizing that the problems inherent in treating chronic pain need national attention, it is important to focus on key practice points that individual providers are able to do. These points include staying updated on best practices, understanding one’s own biases and attempting to address any that hinder patient care, and becoming an advocate for improved pain care at the local, state, and national level. These actions will decrease the stigmatization burden that currently accompanies the chronic pain condition, and concurrently may improve outcomes.
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Miles, M. B., & Huberman, A. M. (1994). Qualitative data analysis: An expanded sourcebook (2nd ed.). Thousand Oaks: Sage Publications. Monsivais, D. B. (2008). Understanding cultural constructions of chronic pain in Mexican-American women (Paper AAT3362677). Texas Medical Center Dissertations via ProQuest Digital Dissertations. Monsivais, D., & Engebretson, J. (2012). “I’m just not that sick.” Pain medication and identity in Mexican American women
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