| **PSYCHOSOCIAL ASPECTS**

**Nancy J. Holland RN, EdDVice PresidentClient & Community ServicesNational Multiple Sclerosis Society**

*Diagnosis*

Being diagnosed with one of the diseases described todaycreates turmoil which reaches to all aspects of a person’s life. In some ways, lifewill never be quite the same again. Even in the absence of lasting impairment, the worryor efforts to camouflage the worry are always there. The diagnosis often precipitates arollercoaster ride of emotions, involving fear, optimism, despair and hope. Theunpredictability of symptoms and disease course, and the horror of possibilities at thesevere end of the continuum, create a crisis in the lives of the person diagnosed andthose who love her. Chronic illness forces each person to confront, in a very personalway, the frailty and vulnerability of the human condition.

The challenge at this initial phase of the illness is tomove through the feelings of anger, denial and sadness to reach an"accommodation" with the disease. This term is increasingly used to replace"acceptance," true acceptance of a serious chronic and potentially disablingdisease probably never occurs. There is instead a kind of wary recognition that thisunwelcome intruder is here to stay. In order to reach this point, it is important to allowall the feelings that follow diagnosis to be experienced. Grief is a necessary step in theadjustment process in order to move on, just as it is with the loss of a loved one. Theperson must grieve for the former self-image, and integrate the disease as a permanentpart of one’s identity. Grief may be postponed, but it will not be avoidedaltogether. Sometimes these feelings are temporarily misdirected at inappropriate targets,such as anger at spouse or children. It is important for everyone involved to understandwhat is happening and communicate their care and support.

*Depression*

Although depressive feelings are an expected consequence ofthe diagnostic phase, prolonged depression is cause for concern. Symptoms of significantdepression include ongoing and pervasive sadness, loss of interest in—or enjoymentof—important activities and relationships, feelings of hopelessness and despair,sometimes including suicidal feelings or thoughts, and changes in sleep and eatingpatterns. It is important to recognize that relief from depression is readily available.Counseling and/or antidepressant medication are very successful in relieving symptoms ofdepression. Seeking help for this problem demonstrates an understanding of itssignificance, not personal weakness or deficiency.

One positive aspect of the crisis of diagnosis is that itprovides an opportunity for assessing future plans, and a powerful motivation to takeaction which supports those decisions. There is the opportunity to affirm the values andstrengths of the individual and the family, and all the good things which exist despitethe disease. Some people reexamine their philosophy of living, and develop a newappreciation for each day and its possibilities. The impetus to do important things NOW,and not keep postponing them indefinitely, can be a gratifying direction to follow.

*Invisible Symptoms*

In addition to depression, many symptoms of multiplesclerosis, lupus, scleroderma and Sjogren’s syndrome are invisible, and pose specialobstacles in gaining understanding and support from family members, colleagues andfriends. These problems include fatigue, pain and sexual difficulties as common featuresof all four diseases. Fatigue, unrelated to rest or activity level, is probably the mostcommon and often the most disabling symptom of all the autoimmune diseases being discussedtoday. Cognitive dysfunction is less pervasive but has greater personal impact. Impairedmemory, decreased attention span and reduced problem solving ability are problematicfeatures of multiple sclerosis, lupus and Sjogren’s syndrome. 

Acknowledging that these difficulties may occur permitsaccommodation measures to be considered. The feedback from women with these chronicautoimmune diseases is that problems can be addressed, so long as they are realisticallyanticipated and planned for. Since recognition will permit accommodating measures tosupport employment, parenting or volunteer activity, acknowledgment of these problems is acritical first step. In addition, work needs to be done to educate the public about theseinsidious symptoms.

*Strengths and Wellness Models*

Beginning with the diagnostic phase and continuingthroughout the course of the illness, two related models are useful in managing thepsychosocial aspects of chronic autoimmune disease—the "strengths" andwellness models. The "strengths" approach presumes the ability of the individualto adapt, and identifies the person’s positive qualities and behaviors which allfacilitate adjustment. These strengths are supported and enhanced, including previouslysuccessful coping strategies.

Wellness is the opposite of disease orientation in whichthe focus is the chronic disease and its impact on all aspects of the person’s life.In contrast, a wellness approach looks at achieving the positive state of maximal health,not just minimizing disease impact. Jones and Kilpatrick propose a definition of wellnessas the state of harmony, energy, positive productivity and well-being in anindividual’s mind, body, emotions and spirit. This model also encompassesinterpersonal relationships as well as relationships with the environment, the communityand the larger society. It is essential to recognize that health-promoting**behaviorsmay not directly impact the autoimmune disease process. Women can feel good about theirwellness activities without blaming themselves for not doing enough should a relapse ordisease progression occur.

*Individual Styles*

Different women have differing ways of seeking help withbiopsychosocial adaptation. Some seek a group environment with sharing of personalexperiences, peer support, the exchange of successful strategies and the opportunity totry out new behaviors in a safe and accepting environment. For others, the privacy ofindividual counseling works best. Some women are not interested in counseling, regardlessof the format, but are quite comfortable with educational programs. There is yet anothersegment who would not leave the comfort and security of their homes, even if a programwere held next door. However, these women might eagerly devour print materials, and audioand video tapes, if delivered to their homes. The central issue is self-direction andchoice, and the challenge is to provide an array of strategies from which personalselection can be made.

*Socio-Political Context*

It is important to frame the independent living issueswithin a societal and political context. Since the 1960s, scholars and practitioners havedemonstrated that women in American society are treated differently from men, often towomen’s detriment. In the absence of clear physical abnormalities, physiciansfrequently believe that emotional problems are responsible for imaginary or exaggeratedsymptoms in women. A study by Loveland in 1993 found that women presenting with earlymultiple sclerosis symptoms were likely to have these attributed to psychological factors.This was experienced more often by women of color than white women, and by no men in thisstudy. Aguilar also reports the general assumption that women’s illnesses are oftenpsychological rather than physiological. This discriminatory treatment of women in ourhealth care system must be addressed so that the bias can be eliminated and access to carefacilitated for women, especially minority women. In recent years, feminist health careadvocates and others have exerted strong pressure for health research that acknowledgesgender differences. This is especially true for the autoimmune diseases addressed today,which so disproportionately affect women.

*Summary*

Attention to the biopsychosocial components of autoimmunedisorders is critical to promotion of comprehensive care and quality of life for womenwith multiple sclerosis, lupus, scleroderma and Sjogren’s syndrome. Theresponsibility for this is shared by all of us.

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