Thank you to psychologists Dr. Laura Marshak (author of Married with Special-Needs Children and Going Solo) and Dr. Natalie Truba (of Nationwide Children’s Hospital) for providing insight into these complicated dynamics.
Common Individual Patterns
The terminal diagnosis. Extensive parenting responsibilities. Loss of social support. Lack of sleep. Changing relationship dynamics. Medical emergencies. Behavioral challenges.
The chronic stressors are very real and quite overwhelming as a parent of a child with Duchenne Muscular Dystrophy. The stressors are bound to impact a parent’s own mental health and their relationships as well.
Unfortunately, even marriages can’t escape the impacts of the stressors. Actually, it almost seems inevitable that marriages are one of the relationships hit hardest.
Common patterns emerge at the core of a marriage with children with special needs. Those patterns involve how each partner feels and reacts to the diagnosis, its demands, their partner, and how to cope with all the stress. In other words, common patterns that often emerge are:
guilt & consumption
resentment & detachment
Duchenne Muscular Dystrophy is an X-linked hereditary disease. As such, the majority of children with Duchenne inherit the disease from their mothers.
Some women are aware of their family history with Duchenne, but many mothers don’t know they’re carriers. Some women even find out there is no family history of Duchenne and that the mutation actually originated with them.
Regardless of the details of heredity, almost every mother who is told that she passed a terminal illness on to her child experiences intense grief, guilt and blame.
Even for mothers who are not carriers of Duchenne, they may experience similar feelings. They may feel grief, guilt and blame for not noticing the signs of DMD sooner, for not getting help sooner, for not advocating enough, and on and on.
Unfortunately, it’s not only moms blaming themselves for their children’s disease. Uneducated medical professionals, extended family, even their own children and husbands sometimes blame the mothers for “causing” the disease.
If a mother is already blaming herself, that external blame often fuels internal blame and affects the relationship. Even if a mother recognizes the truth – that she is not responsible – that external blame can quickly taint any relationship, especially marriages.
All this blame in the marriage – potentially from both partners – often leads to feelings of guilt and consumption.
Guilt and Consumption
For any parent of a child with Duchenne Muscular Dystrophy, it’s fairly easy to allow the battle against Duchenne to consume his or her life: to prioritize daily medical needs over “unnecessary” fun activities, to abandon self-care, to neglect friendships, to disengage from intimacy. Rhetorical questions loiter like unwelcome guests:
- “How can I enjoy time out with my spouse when my child is at home without any friends?”
- “What if my child has an emergency while I’m away?”
- “Why would I put my own self-care needs above my child’s?”
- “My family needs me to work more hours for financial security than to go get an annual checkup.”
The skewed logic of anxious, depressed and exhausted parents stands little chance against these rhetorical questions. Many parents fall easily into the guilt and consumption trap.
Unfortunately, for those women who are blamed for “giving” their children a terminal illness, the trap of guilt and consumption is near impossible to escape. Quite often, there’s negligible space (or energy) left for much joy and laughter in their lives. If some joy or laughter accidentally sneaks in, guilt frequently reemerges to quickly extinguish it.
The guilt and consumption trap easily creates a barrier between spouses. That barrier, in turn, often gives way to resentment and detachment.
Resentment and Detachment
With a diagnosis like Duchenne Muscular Dystrophy, parents frequently take the strategy of “divide and conquer” upon diagnosis to meet the new demands of family life. Often, one parent becomes the main breadwinner, while the other becomes the primary caregiver, sometimes even leaving his or her profession to do so.
Unfortunately, the choices/strategies that seem to work well at diagnosis, may turn toxic for the marriage in the long run. The initial “divide and conquer” can set the stage for partners to engage in “the resentment dance,” particularly when coupled with patterns of blame, guilt and consumption. Both parents may begin to feel trapped in their own roles.
The main caregiving parents may have little to no breaks from the caregiving. For those parents, caring for the child may become so intense and consuming that they give up their own interests. Resentment of the “breadwinner” frequently follows.
The breadwinners, on the other hand, may experience extreme pressure as the sole financial provider. They may give so much at work to ensure financial stability that they have little to no reserves left to help at home.
Even if there are extra reserves to help, they may face barriers. The breadwinner may be so inexperienced with caregiving that he (or she) ensures repeated criticism from the child and/or caregiver for helping “in the wrong way.” Lack of flexibility, patience or support for giving care “in a different way” very well may frustrate the breadwinner to the point of abandoning attempts to help.
In addition, there may also be cultural factors at play delegating caregiving to just one gender. Both mother and father can feel trapped in this situation with one feeling overwhelmed by the responsibilities and the other feeling significantly shut out from the child’s life. And yet, any attempts at changing expected gender roles may add even more social stress to the family.
So much sacrifice, so much self-neglect, and so much unhappiness. It’s easy to see a stranger’s face in the mirror. It’s easy to see a stranger in the place of that person who was supposed to be a partner. It’s easy to detach from the relationship in an effort of energy conservation and self-preservation.
Despite the way it may seem, parents of individuals with Duchenne are not destined to live out these patterns. The potential of a marriage is not determined by the severity of the child’s diagnosis. There is hope.
There is hope for a stronger relationship. There is hope that the marriage won’t dissolve. It will take self-reflection, communication, creative and collaborative problem solving, but even small changes can reap big rewards.
There is hope.
More to Consider
- Changes in the Individual – coming soon
- Changes in the Relationship – coming soon
- Dystrophin and the Child’s Brain