The vocational implication of two common rheumatic diseases.

With the passage of the Americans with Disabilities Act (ADA) of 1990, rehabilitation counselors and placement specialists have the potential to significantly augment employment opportunities for persons with chronic health conditions and disabilities. For persons experiencing chronic illness, successful rehabilitation will depend largely on counselors' understanding of issues pertaining to chronicity, specifics of disease patterns and progression, and appropriate accommodations that can be implemented. Of these chronic conditions, rheumatic diseases comprise a group of inflammatory joint (e.g., arthritis) and tissue (e.g., myositis) conditions affecting approximately 1 in 7 persons in the United States. They account for approximately 68 million work days lost and are one of the leading causes of work disability (Beardmore, 1993).

Therefore, two chronic rheumatic diseases, Rheumatoid Arthritis (RA) and Systemic Lupus Erythematosus (SLE), have been targeted for discussion due to their similarities on two counts: 1) both are similar in exhibiting symptoms of connective tissue diseases and 2) both are characterized as remitting-relapsing diseases with difficult diagnosis and unpredictable prognosis (Affleck, Tennen, Pfeiffer, & Fifield, 1987; Cornwell & Schmitt, 1990; Pollock, Christian, & Sands, 1990). In addition, both impact women to a far greater degree than men (Reisine & Fifield, 1988). This needs consideration as research suggests that women with disabilities typically experience higher unemployment rates than men with disabilities (dash, 1982; Britt, 1988). Despite the similarities, the two disorders do differ in significant ways as the prognosis for SLE is typically more negative and affects internal organs more severely than RA (Cornwell & Schmitt, 1990). Consequently, both similarities and differences will be highlighted regarding prognosis, pattern, and functional limitations.

Although ADA has the potential to significantly influence a rehabilitation counselor's role in promoting successful employment opportunities for individuals, much will depend on counselors' understanding of interventions related to reasonable accommodations and employment enhancers. The purpose of this article, therefore, is to discuss the medical, functional, and vocational implications of Rheumatoid Arthritis and Systemic Lupus Erythematosus as impediments to employment. Counseling and job placement strategies to enhance employability will be discussed.

Rheumatoid Arthritis

Rheumatoid arthritis is a systemic progressive disease falling under the general category of connective-tissue disorders. Although the exact cause of the disorder is not known, there has been much speculation about its etiology. At one time, it was believed that RA was a manifestation of psychological distress (Sheon, Moskowitz, Goldberg, & Hueter, 1987). At present, one common hypothesis is that this disorder is produced by alterations in immunological responses which cause antibodies to attack synovial membranes within the body (Jayson & Dixon, 1974). Incidence rates within the United States are estimated at between 1-2% of the adult population (Beardmore, 1993; Jayson & Dixon, 1974) making it one of the more common forms of arthritis (Garner & Kinderknecht, 1993). There is a three to one female to male ratio (Beardmore, 1993) with typical onset of the disease occurring most often between the ages of twenty and forty-five (Jayson & Dixon, 1974).

Medical Aspects

Rheumatoid arthritis is an insidious disease characterized by a persistent, but often slow, progression (Beardmore, 1993). RA causes recurrent inflammation of the synovial membranes of the joints (Falvo, 1991). Synovial membranes provide joints with vital fluids which help to maintain their functioning. As synovial membranes become overwhelmed by the body's own immunological agents, they become irritated and display swelling. A layer of tissues then forms over the membrane which restricts the flow of nutrients to the cartilage of the affected joints. This cartilage often becomes eroded and is replaced by fibrous scarred tissue causing pain, stiffness, and decreased mobility (Falvo, 1991; Nicholas, 1981). Nodules, or knots, are sometimes observed as a result of inflammation of tissue lying close to the surface of the skin. Although it is predominately a joint disease, it is a systemic condition that may result in symptoms such as fatigue and weight loss as well as affecting other organs as the heart, lungs, or eyes (Falvo, 1991). Moreover, individuals with RA often experience varying degrees of acute and chronic pain (Garner & Kinderknecht, 1993).

Although it appears that approximately two-thirds of individuals with RA will experience a more progressive form of the disease (Williams, 1974), it remains impossible to accurately predict the course for any one person. Most frequently, it is characterized by a pattern of exacerbations and remissions (Cornwell & Schmitt, 1990; Falvo, 1991). Furthermore, type of onset (acute or insidious) is of little prognostic value although there is some thought that persons with "... more acute onset, paradoxically, are more likely to remit or do relatively better than those with more classic disease" (Hollingworth, 1978, p. 5).

Uncertain about what is in store for the future, individuals with RA may experience a sense of helplessness and loss of control (Garner & Kinderknecht, 1993). As Pollock, Christian, & Sands (1990) note, the process of adapting to chronic illness is complicated and "...implies a balance between the demands of the situation and the ability of an individual to respond to the demands" (p. 300). This can become extremely tiring when coupled with the disabling and/or fatigue factors inherent in RA.

Functional Limitations

Disability occurs in approximately 21 of every 1000 persons with RA. This is a higher rate of disability than is found in heart disease, back impairment, and hypertension (Beardmore, 1993). Increase in functional loss is associated with the disease pattern of the individual. Unfortunately, since arthritis in the earlier stages is an invisible disease, individuals may not receive the understanding and support needed which can complicate adjustment (Garner & Kinderknecht, 1993). Although individual patterns vary, joint infection frequently causes swelling, pain, and stiffness which is usually at its worst in the morning. In addition, individuals may experience a loss of mobility, and in some cases, deformity. Progression of the disease may be accompanied by more generalized symptoms which include fatigue, irritability, and slight fever (Jayson & Dixon, 1974). Dampness, physical strain, mental stress, cold weather and pregnancy have been observed to agitate symptoms (Williams, 1974).

Among the factors frequently hindering an individual's functional ability following onset of RA are a decrease in both endurance and strength. Beardmore (1993) notes that while many actions requiring sedentary and light exertion present little difficulty, more vigorous endeavors may be hampered if stiffness or a loss of strength have affected the particular joint system required to do that work. For example the joints of the lower extremities frequently decrease the individual's ability to stand for long periods of time or to walk extended distances. In addition, functional losses may result due to the inability to move affected joints through their full range of motion. This may be caused by cartilage damage, weakening of the stabilizing ligaments, contracture, or dislocation (Jayson & Dixon, 1974). There may be functional limitations regarding dexterity, grip strength, and quickness of motion (Beardmore, 1993). In addition, all may be affected by a general fatigue.

Systemic Lupus Erythematosus

Systemic lupus erythematosus is an inflammatory, systemic autoimmune disease affecting the connective tissue in various parts of the body (Barr & Merchut, 1992). While no known cause of SLE has been determined, specific factors such as infections, antibiotics, and extreme stress have been identified as possible catalysts to developing the disorder (Lahita, 1994). In addition, hormonal factors have been discussed to account for the high rate of SLE in women (Lahita, 1994). At the present, there is not one specific test that can confirm SLE. Moreover, due to the systemic nature of the disease, symptoms likely vary from individual to individual which complicates the diagnostic process. Although laboratory tests can be used in conjunction with clinical findings, persons with SLE may be initially misdiagnosed (New Research, 1994). Frequently, a period of time is needed for the diagnosis to be confirmed.

Although it has been typically estimated that approximately 500,000 individuals in the United States have been diagnosed with SLE, a recent study reported by the Lupus Foundation of America surprisingly suggests that 1.4 million persons in the United States have lupus (New Research, 1994). This is nearly triple the number of individuals previously thought to have the disorder. These statistics suggest that lupus is more prevalent than leukemia, muscular dystrophy, cerebral palsy, multiple sclerosis, and cystic fibrosis (New Research, 1994). While women are eight times as likely as men to be diagnosed with lupus, women who are African-American and Hispanic are affected in greater number (Beardmore, 1993; New Research, 1994). Typical onset is during adolescence or early adulthood (Rodnan, Schumacher, & Zvaifler, 1983).

Medical Aspects

Lupus may affect connective tissue in any part of the body. It affects multiple organs including the central nervous system, joints, blood, and/or kidneys (Rodnan, Schumacher, & Zvaifler, 1983). Typically characterized as a remitting/relapsing disease, there is no set pattern of progression. Although progression may be swift depending on the organs effected, recent reports suggest that individuals with SLE may expect periods of significant improvement interspersed with periods of remission (Barr & Merchut, 1992; Falvo, 1991; Rodnan, Schumacher, & Zvaifler, 1983). Although symptoms may appear and spontaneously disappear (Falvo, 1991), approximately 90% of individuals with SLE will experience either achy or swollen joints (i.e., arthralgia or arthritis (Lahita, 1994).

Symptoms vary in terms of type, intensity and duration due to the organ system involved at the time of relapse. Common characteristics often used in diagnosis include an erythematous rash over the nose and cheeks, renal, cardiac and neurologic difficulties (Rodnan, Schumacher, & Zvaifler, 1983). In addition, individuals frequently experience problems related to weight loss and malaise, kidney failure, fever, and inflammatory myositis (Beardmore, 1993).

Functional Limitations

Due to the multi-system nature of this disease, functional problems vary. Fatigue and weakness are common symptoms having critical vocational significance. Individuals may require more rest periods than is normal and avoid situations that are either/or stressful or tiring (Falvo, 1991). They are often sensitive to sunlight, thus most likely unable to work outdoors. Although SLE is similar to RA regarding joint pain, it differs as it affects multiple organ systems so features of morning stiffness and deformity reported for RA are rare (Beardmore, 1993). While persons with SLE may require little special consideration during periods of remission, numerous functional limitations may occur, though, during times of relapse.

Individuals may experience pulmonary and cardiac problems which impede activities requiring increased physical exertion as well as experience ambulatory and motor difficulties (Beardmore, 1993). Fluid build-up around the heart and lungs caused by the effects of kidney damage may also impact functional ability (Falvo, 1991). Problems related to arthritis (occurring in over 90% of individuals) create further functional limitations. Persons who have central nervous system symptoms may be limited either by emotional problems or chronic depression (Beardmore, 1993). In addition, neuropsychological symptoms may be influenced by the high doses of corticosteroid used to treat SLE (Falvo, 1991). At one time, SLE was thought to be a rare disease with extremely poor prognosis. Now appraised from a chronic illness perspective, issues related to the patterns of multiple exacerbations and remissions are more critical considerations (Cornwell & Schmitt, 1990).

Vocational Implications

There are various factors that impact employment and need consideration when working with persons who have either/or both SLE and RA. For persons with rheumatic conditions, ambulation may be difficult and assistive aides (e.g., walkers, canes, etc.) may be required (Falvo, 1991). Individuals may experience enormous stress related to both the current disease situation and concern over future ramifications of the illness. Furthermore, these illnesses often impact on household responsibilities and completion of home tasks. In a study examining roles of women with RA, Allaire (1992) notes that counselors must consider both management of household work and market work when determining rehabilitation goals. While there are specific considerations for each individual disorder, several may apply to other chronic disabling health conditions as well.

Chronicity. The day-to-day living with chronic illness creates an enormous struggle for individuals. By its very nature, individuals are forced to wrestle on an ongoing basis with the ramifications of the illness. Not only required to direct long-term attention to the disorder, they often encounter a number of personal losses. Individuals with chronic illnesses are frequently forced to adjust to ' charging body images and shifting abilities such as loss of mobility, loss of function, and loss of independence (Garner & Kinderknecht, 1993; Gordon & Benishek, in press). As Cornwell and Schmitt (1990) note, for persons with both RA and SLE, as their perceived health status declines, feelings of self-esteem also decreases. Counselors may need to address self-esteem issues throughout the rehabilitation process. Moreover, counselors can assist individuals in understanding both their current symptoms and the changing nature of their disorder. Helping clients become a key person in the management of their disease is essential (Garner & Kinderknecht, 1993). This can foster independence and promote positive self-esteem.

Remitting/Relapsing Patterns. Both RA and SLE are characterized by a series of remissions and exacerbations. As with other disorders with non-stable patterns, individuals often experience difficulty coping with uncertainty. The inability to control their daily symptoms and influence their individual disease course has significant implications. According to Affleck et. al., (1987), persons who feel that they have more control over medical care and treatment are rated as more adjusted. Counselors can provide support and understanding for individuals as they learn to deal with the uncertainty of their illness. In addition, by learning more about the specific disease patterns, counselors can better assist clients in developing coping skills and remaining vigilant regarding new symptoms or potential problems (Gordon & Benishek, in press). Furthermore, since diseases such as RA are typified by periods of remission and exacerbation, control over the pace and activities of work could be a decisive factor in getting and maintaining employment (Yelin, Meenan, Nevitt, & Epstein, 1980).

Factors Impacting Employment. Work performance of persons with chronic illness is often hindered due to both the functional limitations created by the disorder and the disease patterns of chronicity. Persons with disorders such as SLE often experience a loss of muscle strength and pain or deformity of joints (Falvo, 1991) which may limit employment options. In addition, unable to maintain a traditional work schedule, individuals with chronic conditions have frequently opted out of the work force. Kornblith, LaRocca, & Baum, (1986) have noted that due to uncertainty over progression, persons with multiple sclerosis may leave employment prematurely without consideration over early job accommodations that might influence employability. This type of premature departure need be also considered when working with persons with rheumatic diseases. Lack of knowledge concerning issues of job restructuring and employer responsibilities may create additional impediments but are ones that counselors can address early on in the disease process.

Fortunately, much of ADA's antidiscrimination regulations can be utilized to promote and maintain employment. As noted by Feldblum (1994), the regulations demand that the inability of an individual to perform a job adequately must be "...viewed in the context of the interaction between societal realities and choices and the individual's disability, rather than in the context of the individual's disability per se" (p. 36).

When attempting to identify the workplace accommodations which will allow persons with health conditions such as RA or SLE to continue to work effectively, the first step, obviously, is to identify the functional limitations associated with the disorder that may decrease productivity or job performance. With RA, symptoms of swelling, stiffness, and pain are most often first observed in the hands, wrists, and ankles. One needs to recognize that because joint stiffness is often at its worst during the morning hours, the amount and difficulty of the work which can be performed as the day progresses may decrease. Surprisingly, Yelin, et al., (1980) report the data concerning work disability for persons with RA is not strongly associated with the physical aspects of the job. Rather "...factors measuring autonomy within work were strongly associated with the probability of work loss (p. 553). They note that persons who have some control over their work pace, as opposed to having supervisors determine it, experienced less work loss. Perhaps the most striking aspect of the findings regarding disease severity is that the probability of work loss is great even with mild disease of short duration.

For both RA and SLE, fatigue and pain are often troubling symptoms. These can be either fleeting symptoms or long standing problems. Both disorders may require differing accommodations at various times as the implications of the disability may change in intensity either daily or week to week. Work alternatives may include flexible hours, self-paced activities, and/or shortened work weeks. More break periods of shorter duration may increase the individual's productivity during the work day. Time for longer rest periods may also be required. More sedentary work needs consideration as well as the demands of the work environment. An opportunity to complete some work at home each week might be an option. This would allow the individual to set his or her own rest/work schedule on occasion. A critical aspect of ADA legislation concerning accommodations is that they may be flexible. Therefore, when appropriate, employers must be willing to do such things as offering individuals the opportunity for modified work schedules or acquiring equipments to aid possible employment (Parry, 1993). In addition, individuals with chronic health conditions may not be discriminated against if time off is needed on a regular basis for medical treatment (Feldblum, 1993).

Obviously, these types of more individualized needs may be required in addition to accommodations in the physical layout of the work environment. Individuals with mobility problems may require ramps and modifications allowing access to bathrooms and other aspects of the workplace such as dining facilities or lounges (Sachs & Redd, 1993). In addition, due to the difficulties associated with pain and swollen joints, functional ability to utilize typical workplace tools (e.g., computers, telephones) may be limited. Assistive devices modified for manual dexterity can be essential. Materials may need to be relocated so that a minimal amount of movement is required as well as modifications in job tasks. The amount of standing on the job may need limitations.

Conclusion

While the difficulties related to SLE and RA are substantial, counselors can provide invaluable assistance in terms of helping individuals with these disorders find and/or maintain employment. As rheumatic diseases account for millions of work day losses per year, clearly counselors need to address the complex issues of chronic illnesses such as these in terms of their impediment to successful employment. Through the mandate of reasonable accommodations in the workplace, hopefully ADA can be utilized to reverse the pessimistic work picture of both SLE and RA. To accomplish this though, counselors must be knowledgeable about the critical medical factors of these diseases, the potential employment problems each create, and the alternative employment possibilities available. In addition, an understanding of the emotional consequences of chronicity and worry over relapse is critical. All are needed to promote successful employment and placement.

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Phyllis A. Gordon, Department of Counseling Psychology, Ball State University, Muncie, Indiana 43706-0585