I jokingly say to my husband that he needs to be more careful when he helps draw up the medicine for my weekly IV treatments, because the medication could make him sick if he got exposed. He rolls his eyes at me and says that this is not his first rodeo, and that he won’t get sick and I shouldn’t worry. I truly doubt my husband knew that when he married me, one thing he would get good at was helping me with treatments for a rare immune condition. Yet in 2020 I was diagnosed with something called common variable immune deficiency. It is a rare disorder that makes it hard to fight infections, and for the rest of my life I will receive weekly infusions that protect me from getting sick and needing to be hospitalized.
Are Household Responsibilities Based on Our Gender?
My husband and I each grew up with ideas of marriage that adhered to strict gender roles. These gender roles relegated us to distinct spheres and tasks. As the woman, I was to tend the domestic front—cook, clean, organize, etc. My husband, as the man, was to tend the non-domestic front—provide for us financially, do the yard work, take care of our cars, etc.
In retrospect, I am not sure where helping your wife with her primary immune deficiency fell, but it certainly did not meet the definition of masculinity we were taught. When I began experiencing chronic fatigue, pain, frequent infections, and deep depression as a result—the mental picture I had for myself as a faithful domestic goddess logistically could not continue. I needed help. Out of necessity, the restrictive gender norms we had built for ourselves dissipated.
When Illness Limits Your Ability
“In sickness and in health” is something we said in our marriage vows, but I’m not sure we grasped what this means for interabled couples. Interabled means one partner has a disability and the other does not. Illness makes us balk at the adages that good marriages have routine date nights (this can be impacted by fatigue, and routine is a foreign word with illness), have regular sex (this can be impacted by chronic pain), and have spouses who strive to serve the other selflessly (yes, but this is not always possible within the dynamics of interabled couples).
But perhaps these adages are unrealistic for everyone. Partners of people who have disabilities and illnesses are often lauded and even told, “I could never do that; your partner is so lucky.” If you want to trigger someone’s internalized ableism, this is a great way to do it! The reality is that we are all needy, and sickness eventually finds us all. It has become clear to me that we are all temporarily able-bodied, and each of us is interdependent, needing one another.
Rhythms of Caregiving
I wonder what premarital counseling would look like if we truly encouraged people to dig into their own biases surrounding illness and how we find ourselves with responsibilities we may never have dreamed of. The patriarchal ideal that centers women as the primary caregivers can clash with the daily rhythms of illness and/or disability in a marriage.
Additionally, our tendency to frame caregiving as only burdensome and exhausting can heap feelings of being a burden on the one receiving the care. I think we must be careful to remember that caregiving is complicated, both for the ones receiving care as well as the ones giving it.
My husband and I have found that caregiving can be a testament to mutuality—the undulating back and forth evident in a healthy relationship. Yet we focus on the adages about good marriages in Christian circles as if they are a sign of morality and faithfulness. I sometimes wondered, Was I less faithful because I was sick and could not bear my “half” of the caregiving?
Caregiving That Leads to Equality
Caregiving has entered our marriage and will always be a part of our marriage. It has forced my husband and I to dispel models that don’t work for us and to expand our definitions of “intimacy.” We have found intimacy in cold washcloths placed on foreheads, water, and Tylenol in the middle of night, holding and bearing witness when the pain of it all is too much. I am thankful for the ways in which gender equity between women and men has shown up because of the very things that I have fought against—illness and being “needy.”
The models of marriage given to us by hierarchical, patriarchal churches did not account for how human bodies work, slow down, ache, bend, and break. I know many couples move away from a complementarian, hierarchical model for marriage after reading egalitarian books or joining an egalitarian church. But for us, we found gender equity in the lived daily experience of our marriage. Gender equity learned through the art of caregiving has reminded us that for our marriage to thrive we must find rhythms that work and are sustainable for us. And our story is a beautiful testament to how God wired the equality of wives and husbands into marriage itself.
