Chapter 8

Coming To Terms With Chronic Illness And Disability

chapter_8 My photography has taught me that swallowtails rarely have perfect wings. They have to cope with their uniqueness as they work, just as we do.

This chapter reviews the sociological issues relating to chronic illness in general in order to apply some of what is understood to the poorly accepted condition MCS.

Excerpt from p. 161:

Compassionate Models Because of the culture’s negative attitudes toward the chronically illand, until recently, the lack of available psychological services, there hasbeen very little published material available on chronic illness. (See Appendix C for further reading.) Strauss (1984) wrote compassionately ofillness from a sociological perspective, but the psychological communityhas been slow to address individual and family issues relating to chronic illness.Jenny Altschuler (1997), however, in Working with ChronicIllness, recognized the bind inherent in having “illness in a world defined by health.” In reference to “delegitimized” illnesses, she says:“[A]ll ill people have to integrate at least two descriptions of themselves, that of being a person in their own right and being ill. However, some have to integrate a third description:experiencing themselves as unwell, but not being regarded as legitimately ill. This [third description] profoundly affects how theyare treated by both family members and professionals.” (p. 4) Altschuler’s work applies to all people with health problems.Understanding how family members are affected when one member is illcan contextualize some of the trauma of MCS as part of a dynamic process that occurs with all serious health problems. Although thespecific demands of each condition differ, people with MCS are not alonein facing delegitimization, loss, and extreme hardship due to illness.

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