Living With Illness Tip Sheet

Introduction

Parents of children with special needs (such as health, emotional, or behavioral conditions) often experience a complex array of feelings, including sadness, despair, uncertainty, anger, and loss. Leaving behind all they had previously known, families are faced with a new perception of daily life and asked to adapt to new and challenging responsibilities. In the first several months following diagnosis, the family's focus centers on the child and his or her schedule for treatment, doctor's visits, and life style adjustments. While the parents endure this necessary yet challenging phase, their own needs often fall by the wayside.

Juggling the Marriage, Parenting, and a Child’s Special Needs

Mothers and fathers play an important role as parents but they also play an equally important role as spouses to one another. Given the significant stressors that families face, it is not unreasonable to expect their marital satisfaction to be impacted during this time. The ways in which each spouse reacts to and copes with the stress of their child's illness has a dramatic influence on their relationship. Each partner deals with powerful feelings and responsibilities in their own individual way. Often times, this is the first time that parents see how their partner copes with tremendous disappointment and loss. Some coping styles are complementary while others contrast. One partner may be very expressive about how they are feeling, while the other may need space and time to sort through their feelings. It is important to recognize that all parents cope differently.

How the Expectations of Others Influence Parents’ Coping

Societal expectations influence how parents “should” respond further reinforcing the demands specific to each partner. Many mothers feel like they need to do “everything.” Mothers often feel pressure to continue to meet the needs of their husbands, household obligations, and other siblings. Unfortunately, they often leave behind their own needs and places of employment.

Fathers commonly state that there is an increased need to continue to provide for their families while under duress and to fight the stigma against being weak, sad, or tearful. Rather, they should be brave, strong, and in control. In trying to live up to the expectations of others, some fathers let go of their need for expression, connection, and time with their partner and family.

Over time the pressure to fulfill these demands becomes too great. Parents are bombarded with financial, emotional, and physical burdens. They are confronted with social isolation, communication breakdown, sibling resentment, conflict, role reversal, and a loss of intimacy.

The Benefits of a “Secure Attachment”

When both partners are hurting, it is difficult for them to be supportive of one another. Spouses become convenient targets for each other's anger and frustration. Stress and the threat of loss can intensify our need for love, affection, and reassurance and change our expectations of how our partners should behave. These changes highlight any potential insecurities or difficulties already existent within the relationship. Secure attachment, or the sense that one can count on their loved one, has been linked to resilience or the ability to deal with stress effectively. This “secure attachment” is a buffer against ongoing stress and the negative effects that stress might have on their relationship.