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...while invisible symptoms include fatigue, pain, depression, and anxiety. In sample of 145 adults with MS, participants reported on these symptoms and their current level of self-reported health distress. Hierarchical regression analyses were used to determine whether invisible or visible symptoms were more predictive of health distress. When visible symptoms were added as the first step in the regression, 18% of the variance in health distress was explained. When invisible symptoms were added as the first step, 53% of the variance was accounted for. The invisible symptoms of pain and depression were the most significant predictors of distress. For a subset of the sample that had had MS for more than 11 years, pain and depression continued to be important predictors, but assistive-device use and fatigue were also important. Nurses should be aware that invisible symptoms may be more troubling to patients than visible symptoms and should ensure that adequate screening and treatment are provided for those with MS.
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In recent years, increased attention has been given to the invisible symptoms of multiple sclerosis (MS), such as fatigue, pain, depression, and anxiety. However, when first diagnosed, patients often imagine that the worst symptoms they will have to deal with are visible physical limitations that would require the use of assistive devices, such as walkers or wheelchairs (Isaksson & Ahlstom, 2006; Johnson, 2003; Koopman & Schweitzer, 1999). For the purpose of this study, invisible symptoms are defined as those symptoms that are life limiting but not readily discernible to others (Davis, 2005). It is critical that individuals with MS and healthcare professionals consider the invisible symptoms of MS because these symptoms might be unidentified, mislabeled, or left untreated (Marshak, Seligman, & Prezant, 2001). Because they are often not discussed or attended to, invisible symptoms may allow the individual to be in denial about his or her MS and the necessity of beginning or continuing disease-modifying treatment. In addition, individuals with invisible disabilities often struggle to convince others that they do not seek an unfair advantage, such as using a handicapped parking spot (Davis). In social interactions, those with invisible symptoms have to decide whether they will forgo needed assistance and accommodations or explain the invisible symptoms and potentially endure disbelief, rejection, humiliation, or social disapproval (Stone, 2005). The purpose of this investigation was to ascertain whether the visible or the invisible symptoms of MS are associated with an individual's increased distress about his or her health.
Background
Talcott Parsons' notion of the sick role (1951) and Erving Goffman's (1963) concept of stigma are two possible theoretical orientations that could be used to hypothesize about the outcomes of invisible and visible symptoms in MS. Unfortunately, the two theories would hypothesize conflicting outcomes for visible and invisible symptoms. In Parsons' sick role, visible symptoms would elicit more social support and provide a visual validation that the individual has a reason to be excused from normal responsibilities, whereas an individual with invisible symptoms may be seen as malingering and may not receive empathy and social support from others (Chamberlain, 2006). The concept of stigma (Goffman) suggests that an individual who has outward visible signs of illness demonstrates something unusual, different, or bad, and as a result, others may discredit and stigmatize him or her (Joachim & Acorn, 2000). Those with invisible symptoms can "pass for normal" and decide how and when they will disclose their symptoms (Hodgman et al., 1979; Joachim & Acorn). Once an individual discloses invisible symptoms, there is the threat of being stigmatized and the possibility of not receiving needed social support. However, if the invisible symptoms are not stigmatized, the individual could receive the necessary assistance. Figure 1 illustrates the differences between Parsons' and Goffman's theories in relation to positive outcomes, with a plus sign (+) indicating that the theory hypothesizes that the individual would experience positive outcomes and a minus sign (-) signifying that the theory hypothesizes negative outcomes for the individual.
Discussion of invisible and visible symptoms in the medical literature is limited, with only passing reference to the terms in MS literature (Cross & Rintell, 1999). Individuals who have fibromyalgia, wherein symptoms are entirely invisible, have reported that no one believed that they were ill because they looked well; they felt that the invisibility of the illness created dilemmas for them (Sturge-Jacobs, 2002). In women with rheumatoid arthritis or myalgic encephalomyelitis, the invisibility of symptoms prompted others, including healthcare professionals, to label these patients as "slackers" (Moss & Dyck, 2002). Hearing loss (Hallberg & Jansson, 1996; Levene, 1983; Lipkin & Williams, 1986; Randall, 1973; Sherlock, 2005; Shohet & Bent, 1998); mental illness (Stewart, Ricci, Chee, Hahn, & Morganstein, 2003); and neurological conditions, such as epilepsy (Hodgman et al., 1979), traumatic brain injury (Chamberlain, 2006), and hemorrhagic stroke (Roding, Lindstrom, Malms, & Ohman, 2003; Stone, 2005) are other conditions for which the concept of invisible symptoms has been discussed. Because of the connection between MS and the neurological conditions previously mentioned, this research will be briefly reviewed.
[FIGURE 1 OMITTED]
In a sample of adolescents with seizure disorders, Hodgman and colleagues (1979) reported that those who have relatively "mild defects involving social disability may be more troubled than those with more apparent defects" (p. 309). The authors speculated that adolescents with a visually apparent disability might have an obvious explanation as to why they are unable to drive or swim, while those with more invisible impairments do not have an obvious, visually apparent reason to be excused from certain age-appropriate behavioral expectations.
Chamberlain (2006) interviewed 60 survivors of traumatic brain injury 1 year after sustaining their injuries. The majority of the survivors showed no physical evidence of their injuries, and 45 of the 60 survivors mentioned the concept of invisibility. Some were distressed by the lack of empathy from healthcare providers, especially for their invisible symptoms. Others felt that they were withdrawing from society because of the embarrassment about what they felt others thought of them and their invisible disabilities.
Two studies (Roding et al., 2003; Stone, 2005) investigated young survivors of hemorrhagic stroke. Both studies had small samples. Roding and colleagues' sample consisted of two women and three men who suffered a hemorrhagic stroke between the ages of 37 and 54 years, while Stone's sample included 22 women who suffered a hemorrhagic stroke between the ages of 8 and 49 years. Roding and colleagues reported that participants felt that because their handicaps were invisible, they were not as legitimate as other forms of handicaps. A quote from one participant illustrated this belief:
I usually say that it might have been easier if my arm was paralsed [sic] and hanging or if I had trouble with speech. Then it would have been easier for my family to understand why mommy cannot unload the dishwasher or why she cannot pack a gym bag (Roding et al., 2003, p. 871).
Stone's (2005) research found that young survivors of hemorrhagic stroke felt that they had to continually explain themselves and their invisible disabilities and expressed frustration that their able-looking bodies gave others expectations about what they should be able to do--expectations that they could not always meet. As a result, the women tried not to enter into situations where they would have difficulties. Even others who were close to the women (e.g., family members and close friends) would commonly forget or deny the invisible disabilities.
As can be seen from the aforementioned studies, those with neurological problems that are not clearly visible felt the need to explain themselves and their disabilities, which appears to be distressing to them. These findings are in line with...
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