Fibromyalgia: Stigmatization and its Impact
Fibromyalgia is defined and validated by the Arthritis Foundation and is characterized by ongoing and widespread musculoskeletal pain and weakness, joint pain, and excessive fatigue, and it is diagnosed by the existence of specific criteria called tender points (Clauw & Groner, 2000; Gemignani, 2003; Mengshoel, 1999). Other symptoms or conditions include stiffness, sleep disorders, soft tissue swelling, muscle spasms, affective and cognitive disorders, paresthesia, irritable bowel or bladder syndromes, tension headaches or migraines, dysmenorrhea, vestibular symptoms, restless leg syndrome, temporomandibular joint dysfunction (TMJ), chest pain, and various environmental and chemical sensitivities. An estimated 6 to 10 million Americans are now thought to have fibromyalgia, with age at onset typically from 29 to 37 years (Bennett, 1996; Paulson, Danielson, & Soderberg, 2002; Hyde, 2001; National Fibromyalgia Association, 2009a). The majority, or 90%, of those with the diagnosis are women, but men and children of all ethnicities also have been diagnosed. A fibromyalgia diagnosis is a diagnosis of exclusion - other disorders are ruled out before fibromyalgia is suggested as the diagnosis. While the cause of fibromyalgia is not known, recent research has suggested a genetic component; disruptions in the processes of the central nervous system are also being closely examined. The actual onset of illness is often triggered by some sort of trauma, injury, or a prolonged duration of stress (National Fibromyalgia Association, 2009a). Fibromyalgia is a disease that is generally discounted by the insurance industry because it is a condition that is not subject to concretely objective diagnosis that is accepted by the industry. Caregivers, as well as providers, often do not understand the disease and its ramifications (Cudney, Butler, Weinert, & Sullivan, 2002; Hyde, 2001).Many people still deny the existence of fibromyalgia (Henriksson, Liedberg, & Gerdle, 2005; Schneider, Vernon, Gordon, Lawson, & Perera, 2009). Although much knowledge about the fibromyalgia syndrome has been gained through research in recent years, the fibromyalgia diagnosis remains controversial. It appears that as soon as new research findings are revealed, there are those who will come forward to dispute or ignore the findings. People with fibromyalgia who experience daily pain, fatigue, and the other debilitating symptoms that often accompany this disease strongly disagree. The pain and the symptoms are very real and they often result in reduced productivity and higher costs to both society and the health care system. However, there is a great variability in symptoms and degree of illness. Many people work and keep the disease hidden, and they compensate and accommodate as they can. Disclosure might assist them with accommodations, but the distrust of others is deemed to be so high that this chance is frequently not taken. Many people remain at work for several years with pain and other symptoms. These are the workers who are less satisfied with their jobs and their quality of life, and they are more isolated. They probably underachieve at work and are, consequently, underestimated by their employers. Misperceptions regarding fibromyalgia have an effect on the individual, his or her family, productivity, and society as a whole.Treatment tends to be focused on amelioration of pain and other symptoms (National Fibromyalgia Association, 2009a). Analgesic (over- the counter and narcotic) and anti-anxiety drugs have been used over the years to deal with the pain involved in fibromyalgia; in other words, those medications that are used to treat pain and stress in general. In 2007, Lyrica was approved as the first drug to treat the symptoms of fibromyalgia by the U.S. Food and Drug Administration (FDA). Its claim is to relieve pain and improve the person's physiological function. It is suggested that Lyrica reduces the number of signals from the brain that are connected to pain. The anti-depressant, Cymbalta, however, was also noted to have an effect on pain and sleep and was approved for use in 2008. The latest drug to be FDA approved was Savella, in 2009. This drug is so new that there is little known about it. However, Savella is thought to reduce the pain of fibromyalgia by selectively inhibiting the reuptake of both serotonin and norepinephrine (National Fibromyalgia Association, 2009b).Current research indicates that fibromyalgia may be the result of pathology in the brain (National Fibromyalgia Association, 2009b). Sleep disturbance has been linked to interruption of or arousal in the delta stage of sleep which is necessary for adequate rest. Actual changes in the nervous system take place, heightening sensitivity to pain. A disorder in the Central Nervous System (CNS) processing in the brain's pain receptors appears to produce a greater sensitivity to pain which tends to be progressive; the pain threshold lowers over time. Researchers have also found abnormalities in the neurochemicals in the brain and spinal system (National Fibromyalgia Association, 2009b). Increases in Substance P, an excitatory neurochemical, and decreases in dopamine, serotonin, and norepinephrine also have been demonstrated. An imbalance like this would result in the widespread pain sensitivity that is a primary symptom of fibromyalgia. As an example, decreased dopamine impacts pleasure, motivation, motor control, and perception of pain (Wood et al., 2007). Abnormal release of this neurochemical has been demonstrated in persons with fibromyalgia. This is just one of the physiological indicators of the condition that needs further research.Stigmatization of a DiseaseStigma occurs when negative attributions or attitudes are focused on individuals who are labeled or set apart because they are different (Goffman, 1963). People who are ill are different and are seen as a possible threat to those who are healthy. The dimensions of stigma in illness include the visibility or invisibility of the condition (Smart, 2001). A lack of visibility does not necessarily mean there is no impairment. Fibromyalgia is, for the most part, an invisible illness. The disability itself may not be apparent except when the person is having a severe exacerbation of symptoms. Since the disease is so variable, the time gap between acute or severe episodes can number in years for some people with fibromyalgia; others must deal with it on a daily basis. However, at the same time, just because a disability is hidden, episodic, or both, does not exclude the existence of severe physical limitations. The accommodations that allow the person with fibromyalgia to function are often more apparent than are symptoms and may cause negative perceptions or bias toward the person with the illness. For example, muscle weakness and fatigue, common symptoms and hallmarks of fibromyalgia, cause mobility impairments that often require the use of a handicapped-parking sticker. The individual with the sticker gets out of his or her vehicle and looks healthy and is perceived to be lazy, a fraud, or both. The person, in turn, is very aware of these kinds of misperceptions and feels inappropriately shamed and guilty. The person with fibromyalgia may choose to hide the disability and not request this common and justified accommodation and deal with consequences that include further injury, exhaustion, frustration, and depression. The individual who attempts to hide this disability often sacrifices function for the appearance of normality.The diagnosis of a controversial and complex disease may not be helpful to the person receiving that diagnosis (Undelan & Malterud, 2007). Although more research has been done on fibromyalgia in the last decade, causation is still not well understood. While a diagnosis may be helpful initially, giving the person with fibromyalgia some aspect of credibility as well as relief, long- term patients often back away from the diagnosis. Naming a disease usually gives a person's suffering and pain some meaning as well as credibility in the medical community. Unfortunately, medical professionals still respond to fibromyalgia with a great deal of variation (Looper & Kirmayer, 2004; Undelan & Malterud, 2007). When a person receives a diagnosis of fibromyalgia, several negative things occur. The limitations in the form of treatment options are recognized. The person still has pain and other symptoms, and there is still a scarcity of respect and understanding for these symptoms. Fibromyalgia is still generally categorized as a psychologically- induced syndrome by the lay public and many in the medical field. Both the public and professionals tend to be dismissive of complaints; the still suffering individual gets no sympathy or empathy. So he or she wonders: What has changed? There is now a name and label with attached negativity and stigma that will follow the person throughout life (Undelan & Malterud, 2007).If the cause is in doubt or unknown, the disease tends to be ignored or misunderstood. For this reason, fibromyalgia patients do not trust medical professionals, employers, or family and friends (Gustafsson, Ekholm, & Ohman, 2004). Family and friends may wish to help but they often do not understand. People with fibromyalgia feel the doubt and respond with feelings of low self-esteem, depression, and a general lack of satisfaction in life. In their desire to not feel this negative backlash, they frequently stay hidden. In order to avoid stigma, the person with fibromyalgia must weigh the costs and benefits of disclosure (Smart, 2001). Unfortunately, with a disorder like fibromyalgia there are often more costs than benefits involved with nondisclosure. Function is sacrificed and symptoms may be exacerbated. Nondisclosure for limited purpose may be acceptable, as in the case of a job application or initial screening. Usually, in the long term, nondisclosure has serious and negative consequences. It is not only very stressful to hide something on a daily basis, but this can lead to a loss of individual identity. For instance, the person with fibromyalgia may play healthy at work or school and go home completely exhausted, in pain, and sick. Playing two roles further exacerbates the symptoms and also negatively affects overall quality of life (Asbring & Navaren, 2001).Progression to better health can be impeded by negative self- evaluations. Hallberg and Carlsson (1998) found that women's ability to manage pain was related to their perception of its origin and the meaning that was attached to pain. If origin of pain is attributed to the body, there is progression towards health. If pain is thought to be of psychological origin, then progression toward health is impeded. Pain involves a lot of energy expenditure; life begins to revolve around the pain. Uncertainty occurs that reduces commitment as well as the ability to schedule many activities. Pessimism and depression follow quickly, and life loses its meaning. Many women feel that no one understands or cares to understand. Yet in the early stages of fibromyalgia, women look healthy and are often perfectionists and high achievers. However, this is difficult to sustain overtime and life becomes all about work (i.e., perfect work) and pain. Quality of life is sacrificed for quality of work (Hallberg & Carlson, 1998).Gender IssuesSince most persons with fibromyalgia are female, gender is an additional stigma and barrier to dealing with this disease (Godfrey & Mackey, 2008; Malterud, 2005). Medical professionals tend to treat women and men who have pain differently. Women's pain is more often thought to be psychologically-induced while men's pain is considered more real. There are genuine differences in the response to pain by gender. In general, women tend to have lower pain thresholds, and their response to analgesics is different than men. There are many reasons for this discrepancy including genetic make-up, body mass, metabolism differences, hormonal influences, and differential brain chemistry (Godfrey & Mackey, 2008).Women's pain is also treated differentially by physicians (Godfrey & Mackey, 2008; Malterud, 2005). Men tend to get narcotics for the pain itself; women receive tranquilizers for anxiety and anti-depressants for depression. The illness cycle for a woman who is eventually diagnosed with fibromyalgia is typical (Undelan & Malterud, 2007). There is the onset of the illness, which can be very confusing. The woman searches for help, finds little, and after years of symptoms finally gets the fibromyalgia diagnosis. Still, she faces doubt and disbelief from medical providers, family, friends, employers, and insurance providers - if she discloses at all. Women feel trapped; they are in real pain yet they are not believed. This diagnosis carries little validation for them and they get depressed, discouraged and tend to feel let down by everyone around them.ParallelsComing out as a gay person can result in patterns of behavior similar to persons stigmatized by fibromyalgia. Stigma results from observed deviance from an established or standardized norm (Myers, 2004). The question of disclosure or nondisclosure for gay persons results in passing, minimizing, and downplaying. In the case of fibromyalgia, the person will pass as healthy and minimize or downplay any moods or symptoms that do come through. Any deviance carries with it shame, guilt, and lowered self-esteem. There is a pressure from medical personnel and other persons in the life of the person having fibromyalgia to be brave or stoic in the face of any pain or other symptoms. Fibromyalgia' s validity as a physiological condition rather than a psychologically induced syndrome is still questioned much like the cause of homosexuality was several years ago.Revelation of any chronic illness or condition carries stigma (Myers, 2004). Healthy people want the ill person to be well and to pretend that he or she is healthy. People who have chronic back pain face many of the same concerns and issues as persons with fibromyalgia (Holloway, Sofaer-Bennett, & Walker, 2007). Causes of back pain are also complex and variable and tend to be exacerbated by several factors. If there are no clear-cut causes that can be established, pain is frequently dismissed by medical professionals or deemed to be psychogenic. If the person with back pain does not respond to the various medical options presented, like steroidal injections, he or she has failed to be a good patient. The medical model is based on cure or elimination of symptoms through medical procedures or medications. When this is not the outcome of intervention, many professionals dismiss the symptoms and treat the patient as morally weak, oversensitive, and less than human. The patient who is still in pain and distress feels humiliated and discouraged and is treated as a malingerer. Patients who do not get well are treated differently than those who do respond positively to treatment. Patients who are resistant to treatment become unpopular and this, in turn, discourages further help-seeking behavior and increases the perception of stigma.Identity: Loss/ChangeAny chronic illness causes a significant disruption in life function (Asbring, 2001; Soderberg & Lundman, 2001 ; White, Lemkau, & Ciasen, 2001). It may also cause a disruption in the identity of the person with the illness. Life for people with fibromyalgia changes forever and, to date, there is no cure. Therefore, the person who existed before illness onset is no more. A new identity that encompasses acceptance of the disability along with individual coping strategies for dealing with the illness must be developed. Before that can happen, however, the illness itself must be understood by all parties involved including the person with fibromyalgia, providers and other caregivers, family, friends, and employers (Soderberg & Lundman, 2001).Asbring (2001) closely examined the disruption of lifestyle and the impact on identity of people with fibromyalgia. The changes that are required to live long-term with this disease involve every aspect of life including daily transitions, family, working, and social life. An important component of the disease is a substantial reduction in the amount of and time spent on activities. Individual changes in pacing and the setting of priorities (i.e. disability management issues) have to be worked out for optimal use of time and comfort. The changes in type and level of activity can very well affect a person's confidence and competence. The changes are difficult to accept and may be complex to implement. The result is that the past self who could participate and accomplish no longer exists. The identity change from a healthy person to a person with fibromyalgia must take place for an acceptable quality of life to be the outcome (Asbring, 2001).Activities that had been enjoyed prior to onset may be impossible to take part in, like jogging or dancing (Asbring, 2001; Asbring & Narvanen, 2002). Chores that were not a problem before may have to be given over to someone else. That help may or may not be forthcoming. The stigmatization of the fibromyalgia diagnosis implies laziness on the part of people who really cannot participate anymore. Some activities are avoided completely or are done with the reality that there is a price to be paid for doing them. People can be exhausted, in pain, or both for several days after engaging in certain activities. Some activities cannot be avoided altogether, like moving for instance, and extra costs may be involved. Expensive help may have to be retained, and the person with fibromyalgia may limit, but still engage in some activity with pain and discomfort to follow the attempt (Asbring, 2001; Asbring & Narvanen, 2002).Keep in mind that throughout all these changes, other people are involved. Relationships change or are lost (Asbring, 2001; Asbring & Narvanen, 2002). The changes are dramatic and disturbing for the person with fibromyalgia, but at the same time this drama may be invisible to others. Planning becomes more complex or impossible due to the uncertainties characterized by the disease but family, friends, employers, and physicians may not understand or even be sympathetic. In fact, the person dealing with fibromyalgia can become very isolated just when support is needed the most.Social SupportSince the ambiguity and controversy of a fibromyalgia diagnosis is so unhelpful, what can assist persons who have this diagnosis? These individuals seldom receive support from those who do not have the disease and social support is badly needed (Undeland & Malterud, 2007). After the initial relief that comes from getting a name for their suffering, people with fibromyalgia may easily relapse to depression and hopelessness. They may try to adapt as well as possible on their own, but this is a difficult path. Isolation itself becomes a way of adapting. Acceptance can either mean acute distress or finding a sense of belonging with others who suffer similarly. Those who become members of a support group, whether specific to fibromyalgia or more generally for those who live with chronic pain, tend to feel better. People with chronic pain participating in support groups get together and exchange experiences, coping strategies, and empathy. They feel a bond with others who do understand and do not imply that they are imagining their symptoms. A safe and comfortable environment is created in which people can relax and feel normal. However helpful this may be, usually those with more severe symptoms seek out support while those with more minor forms of the disease may stay hidden (Undeland & Malterud, 2007). With support and understanding, shame and guilt can be ameliorated or eliminated (Gustafsson et al., 2004). When persons with the fibromyalgia diagnosis hear from others with similar symptoms and problems, they can change their own images and leave their shame and doubt behind. Self-esteem and self-respect increase while frustration and stress can decrease.Work and Work SettingThere is a scarcity of research with people who are working and are diagnosed with fibromyalgia (Henriksson et al., 2005). The empirical research that does exist relied on small, non-random sampling, which restricts generalization. Much of this research has been done with people who voluntarily do not work or who rely on disability payments. The muscle weakness, pain, fatigue, and motor control issues involved with the disorder make it difficult for some with fibromyalgia to perform common work functions like physical labor, computer, and telephone work. Yet many remain at work for years and in pain. They do this because work is important. So who works and how do they manage it? People with fibromyalgia who work usually find a way to compensate so that they can feel satisfied, fairly comfortable, and productive. With work they have a social environment, a sense of fulfillment and belonging, some structure, and feel they are still contributing to society as a whole. As noted, the degree of impairment may not be the primary indicator of whether a person works or not. The degree or severity of symptoms is variable and early intervention, employee, and employer knowledge of the disease and life situation all have an impact. Family commitments, positive supports, and work ethic all play a role in the desire and ability to have a satisfying work situation (Henriksson et al., 2005).Lofgren, Ekholm, and Ohman (2006) found five central themes from descriptions of women's experiences of living and working with fibromyalgia that included grief, loss, struggle, anger, and vulnerability. These findings came from women who kept working in spite of severe symptoms. They managed to do this by adapting to change with a variety of coping strategies. These women had to grieve, accept and start a new and positive way of living and working, and use different strategies for coping with symptoms. Support from loved ones was also found to be helpful.Women can use pain as a signal of stress and a cue to change things like commitment level and still retain a good self-image (Mengshoel & Heggen, 2004). They can also refuse to accept the sick role and the uncertainty of diagnosis and choose to remain positive. They can refuse to adapt to the role, thus rejecting the stigma attached to the role. They can focus on possibilities, rather than limitations, and strengths, rather than weaknesses. If it is true that stress plays an integral part in the disease process in fibromyalgia, reduction of stigma can contribute to reduction in stress leading to more satisfied individuals. These are individuals who claim recovery and productivity in the world of work.Examining the employer's viewpoint, Harian and Robert ( 1 998) suggested that employers often resist reasonable accommodation requests in order to contain costs and to keep their authority base intact. They have also been known to discourage employees with disabilities from making accommodation requests. One of the major decisions that a person with a hidden disability makes is a decision about disclosure of the disability to an employer. The negative biases and the stigma that may be encountered may make this a complicated and difficult decision. Dalgin and Gilbride (2003) found that several issues concerned a sample of persons with a psychiatric disability. Disability identity was crucial to the issue of disability disclosure. A related issue was that the definition of the term disability appears to be individual and dependent on context or setting. While the study participants did not consider psychiatric diagnosis to be a disability or to require accommodations, they also were concerned about any type of disclosure having a negative impact on their perception as workers. They were worried about several issues including closer supervision, lack of advancement opportunities, and termination or not being hired at all. Every participant mentioned the need to work harder to prove their worth if they disclosed.People with newly diagnosed rheumatoid arthritis cited work as a primary concern (McQuade, 2001). In spite of discomfort, persons with rheumatoid arthritis also may seem healthy to others. When they do claim illness or ask for accommodations, they are perceived more negatively than other workers. The invisibility of the disease makes it more difficult for healthier co-workers to put them in the sick category.While people diagnosed with fibromyalgia deal with the same issues as anyone with a hidden disability, it may also be difficult to get a job that is appropriate for the person with severe fibromyalgia symptoms (Asbring, 2001). Those who do work compensate by losing other -parts of their lives, like social activities. They work a full day and then go home and rest so they can return to work the following day. Since work and identity are often connected, this may be a sacrifice that has to be made. However, it is then alienating and isolating for the person with fibromyalgia and the result is depression, anger, frustration, and grief for the lost parts of the self.Discussion and Recommendations: Changes and StrategiesChronic pain is real and produces barriers or boundaries for those who experience it (Gustafsson et al., 2004). There are activities that can no longer be tolerated. People are often slower and must be more methodical in their tasks. A rehabilitation program specific for those with fibromyalgia can be helpful with adjustment and compensation without losing energy and respect. Setting limits that can be handled on an individual basis is important to transforming frustration and hopelessness to a more positive self- image and the idea of caring for self. This means that self-care is no longer seen as malingering or a burden for others; it is known as legitimate self-care for a person with pain and an authentic illness.For the individual with the diagnosis of fibromyalgia, emotional acceptance and reconciliation with the facts of an incurable and debilitating illness must take place (Lindberg & Iwarsson 2002; Wassern, Beckman, & Dudley, 2001). A deeper understanding of the disease with all of its uncertainties and ramifications is important. As noted, limits or boundaries need to be set and adhered to, and inappropriate guilt and shame must be left behind. An important element is the understanding of stress and its ramifications on the body (Gustafsson et al., 2004). Unnecessary muscle tension should be avoided as much as possible as this will prevent further deterioration. Some activities may have to be replaced by less demanding ones. Daily life needs to be organized and help should be requested (again, without guilt), as necessary.The definition of fibromyalgia needs to be changed to make it more acceptable and credible. The current ambiguity of cause in this case does not exclude the reality of the condition and the existence of debilitating symptoms. There are millions of persons suffering on a daily basis who can attest to this (Alamo, Moral, & de Torres, 2002). People need to be educated, including providers and caregivers who are often the gatekeepers for accommodations. They need to be educated about all aspects of this disease, the psychosocial and psychological consequences as well as the physiological discomfort. Stigmatization and discrimination cause distress and increase the problems associated with fibromyalgia. One of the significant issues is that this very Stigmatization and discrimination can begin with the primary health care provider. If the physician treating the patient does not believe or understand the ramifications of his or her treatment decisions, the chances of a good outcome are slim to none.More interventions going beyond the medical model and dealing with psychosocial issues, like stigma and blame, should be developed and implemented. A few have been tried, but with limited samples and results. For instance, Cote (1999) tested an intervention in a small pilot study that combined the physical, cognitive, and behavioral elements to reintegrate persons with fibromyalgia into the workplace. A multidisciplinary team supervised participants on a daily basis, however. While the results were encouraging, the challenge would be to design a cost effective intervention as well as to convince employers of its necessity.In the workplace, those with fibromyalgia must take the risk and pursue the accommodations that they need (Crooks, 2007). Rehabilitation counselors should investigate flexibility in schedules, job sharing, and work at home as a few ways persons with fibromyalgia can stay in the work world. These options would reduce energy expenditures from keeping up appearances and commuting. Those who do receive assistance could work part time. Women have suggested that subsidies be tied to the worker rather than to the employer. This would give women a bargaining advantage.In conclusion, while the Americans with Disabilities Act (ADA) puts forth the goal of equal opportunities, the reality of the application of this goal must be monitored closely. Assistance for those with fibromyalgia and other controversial and/or costly disabilities, like diabetes, may be put in jeopardy. These are uncertain times and what is not used may be lost in uncertain times.