After a very difficult few months of caring for Bodhi and me (with several infections) as well as maintaining her practice, our household, and her roles as nana, wife, and friend, let Sheila’s own voice from her 1998 Pacifica Graduate Institute thesis be heard once again. Also, let it be noted we are in our fiftieth year of being together and nearly fortieth year of her sharing my illness.
A biomedical model that often fails to discriminate between disease and illness tends to ignore the psychosocial and spiritual dimensions of illness. The spouse’s role is reduced to an instrumental one for the purposes of caretaking, treatment compliance, and, increasingly, providing medical services in the home. Regardless of her own needs, the spouse’s willingness and availability is taken for granted as an economical alternative to private nursing care.
Modern society needs to broaden its vision to perceive illness in a more contextual framework as was pointed out more than a half century ago by physician Henry Richardson, “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.”
Naming one partner in a marriage as “sick” or “disabled” and the other as the “well” spouse serves neither. First, it creates a false dichotomy of two people living in two different realms, but forced to coexist. This accentuates the differences between them, rather than focusing on shared suffering and mutual need. Second, it reinforces the role of the diagnosed partner as the passive and dependent member in the relationship with a lesser ability to control or influence his or her life.
Third, it promotes unrealistic expectations of the so-called “well” spouse, to be the stronger, more active party in the partnership, the intermediary and voice in the outer world, responsible for the “weaker” partner’s physical and mental well-being, and obligated to maintain the family and household’s functioning. Fourth, as a carrier of the family’s overall load, the “well” spouse is the one who worries that he or she isn’t doing enough, caring enough or providing the right kind of help and frequently feels guilty when the “ill” partner does not recover.
The felt suffering of the non-diagnosed spouse, unrecognized and often dismissed, is usually pushed underground. To complain would be to lift the veil, revealing a harsh reality behind the guise of smiling sacrifice and righteousness. People often say to those enduring the often private, less visible effects of chronic illness, “But you look so well, how could you be ill?” The question and answers may easily be the same if directed to “well spouses.”
To honor and acknowledge the reality of the lives and losses of millions of so-called “well” spouses the world over, we think it better replace the earlier term with the phrase “non-diagnosed” partner or spouse.