Nearly twenty years ago, some fifteen years after my diagnosis of MS, Sheila received her Masters in Counseling Psychology from Pacifica Graduate Institute in Santa Barbara. Her dissertation was titled In Sickness and in Health: The Impact of Chronic Illness on the “Well Spouse.” As she reported in her study, most first person accounts of illness are written by the diagnosed person, far fewer by the partner. I think it important for her voice to be heard. Much of what she wrote then remains true now. Any view of illness as a “transformative” must be grounded in the “dirt” of actual lives and experience.
The combination of unpredictability, progressive loss over a lifetime, and no hope of cure make chronic illness devastating for even the most well-adjusted couples. In that sense, the diagnosed person has the disease, but both people in the relationship share the illness. In fact, the illness may be worse in some ways for the caregiving spouse that it is for the so-called sick partner.
Society provides a partner with a disease with a sick role, which does have some benefits. He or she is expected to rest, stay home from work, reduce the level of activity, be waited on by others who attend to his comfort and care. The non-diagnosed spouse has no complementary role which is clearly sanctioned or feasible. She must simultaneously be a wife, nurse, mother, spokesperson, head of household, career woman, financial manager, nutritionist, maid, physical therapist, social director and cheerleader.
While attention, treatment, sympathy, and support are focused on ill partners, their non-diseased spouses are expected to muster the strength and carry on with few complaints and little support or acknowledgement. The “superwoman” myth is nothing on that either of the “caregiving spouse.”
The multiple losses, changes in daily living, new roles, and multiplying demands take a toll on even the most saintly of so called “well spouses.” Many report severe anxiety and bouts of clinical depression as a result of living with the constant uncertainty, dashed hopes, and enormous weight of being the primary witness and caregiver to their partner while juggling career and family responsibilities. The cost in lost productivity and opportunity, as well as the sheer emotional, physical and financial drain equals, if not surpasses, that of any chronic physical illness.
Almost 20 years ago, a plea was made for the recognition and classification of “caregiver disorder” as a treatable psychiatric syndrome deserving of medical and psychological attention. Modern society needs to broaden its vision to perceive illness in a more contextual framework as was pointed out more than half a century ago, “the idea of disease as an entity which is limited to one person and can be transmitted to another, fades into the background and disease becomes an integral part of the continuous process of living. The family is the unit of illness because it is the unit of living.”