Rebalancing the Family Mobile:
The Impact of Chronic Illness and Disability on the Family
by James May

Keynote Speech given at the International Pediatric Rheumatology Conference, Park City, UT

Families are complex entities. Salvador Minuchin defines them as ecosystems, multi-bodied organisms which adapt to continual change. Families are never static; they are interconnected and interdependent. What happens to one family member clearly affects all the others. Ultimately, the whole is greater than the sum of its parts. To view families otherwise is myopic. Metaphorically, families are like mobiles; they come in a variety of sizes and shapes; what they have in common is that they hang in a delicate balance. No matter how many parts they have, if one part is removed or changed the entire mobile contorts or collapses and loses its shape. Also like mobiles, each family member influences the others. A few years back 60 Minutes told a story about a young man born with the birth defects from thalidomide. On first viewing it seemed to be a tremendous success story. The man, in his early 30’s, had completed two years of college, held a good job, and had an active social life. Through the use of adaptive devices he was able to drive a car. There certainly had been many discouraging moments, but his life was a testimony to individual courage and personal strength. However, the story dramatically changed when the mother was interviewed. She lived alone, as her husband had died five years earlier. Though he died of heart problems, the mother said, "He was a man who never could outwardly express his inner feelings; there was so much stress in raising our son, I believe that is what really killed him." The woman also had two daughters, neither of whom she had seen or talked with in many years. "They resented all the time and energy that went to taking care of their brother. Both left home before they turned 17." The mother’s final remark served as a revealing commentary on their lives; "Isn’t it ironic that the only person who turned out okay in our family was the person with the disability."

All families must cope with stressful events. Some of these events produce temporary change. If a person broke a leg while skiing, a family would respond in significant -- if not terribly earthshaking -- ways. Family members would be asked to take over some of the household chores, and there might be increased tension in the household. There would probably be some economic "tightening of the belt." But when the cast came off and the leg was rehabilitated, the family would probably rebalance themselves much the same way they were before the accident.

Other events produce permanent change; the family balance will forever be different. Such events include divorce, the death of a child or parent, chronic illness and a disabling condition. When these events happen families move into higher levels of complexity; mom, dad, children, extended family members all must find new ways to regain a sense of balance in the face of such trauma. No matter how hard they try, the family will never be the same again. Traditionally medical and educational services have been directed at the "identified patient," the person who is sick or disabled. However, research makes it clear that the other family members are most likely feeling even greater anxiety and stress than the identified person with the special health needs.

Let me explain the above scenario in the context of my own family. When I was fourteen I very suddenly contracted juvenile rheumatoid arthritis. In a matter of months I went from a typical, happy-go-lucky kid, whose primary love in life was sports, to a depressed, very unhappy young man, at times even suicidal. It was tough enough being an adolescent, but an adolescent with a serious chronic illness was often overwhelming, both to me and to my family. Shy and introverted, I spent far too much time by myself at home. I did however become quite an astute observer of the changes that were happening to all of us.

My mother, a very gregarious, outgoing woman, was now sadder, moodier. Her world, once large, unrestricted and full of relationships, was now primarily spent taking her son to doctor’s appointments and therapy sessions. Often at night I would find her crying. Upon asking what was wrong, she would reply that she was just "blue." Yet I knew what was wrong, and I often felt guilty about "doing" this to her, making her life so limited.

My sister was three years older than I, and though we were not terribly close, we got along well. After I became ill she tended to hover and often wanted to care for me. This is not what a young adolescent boy needed; I just wanted to maintain my independence and be left alone. It was only later I discovered her guilt about not being able to help me out. A crack opened in our relationship, one that was very hard to close.

The changes in my dad were perhaps the most interesting of all. We had always been quite close. A truck salesman, he started to spend increased time at his job, more time on the road, and we gradually grew apart. Rarely did he speak with me about the illness, and he seemed distant and detached. I really needed him, and as I approached my high school graduation I felt abandoned and angry. My reaction was that he just didn’t care.

What was additionally clear was that I was the focal point of my entire family, including aunts and uncles, my grandparents, the neighbors, the church members; everyone was impacted by my illness. I seemed to be on every prayer line in town. Our family mobile had been thrown off balance, and we were desperately struggling to right ourselves. Believing I was the cause of my family’s unhappiness, my self-esteem hit an all time low. What I did not realize was that my family’s self-esteem was at an all time low also.

Hindsight is a wonderful thing, and indeed time is a great healer. My family now more fully understands about what happened during that period of time in our lives. What is totally clear is that all illness, all disabling conditions, are family issues. We cannot talk about family members in isolation. Arletta Hudgens, a marriage and family counselor, puts it very aptly:

Chronic illness or disabling conditions are powerful forces that often control the structure, the actions and reactions of family mem bers. They can effect sweeping changes in family roles, realign subsystems within the family, and isolate family members from each other and from outside influences. Consequent anger and guilt can change a normally functioning family into a frustrated, rigid and unhappy group of people. (Hudgens, 1979)

Chronic illness or disability finds the weak links in the family and exaggerates them. No two families are ever the same. We all have different histories, different ways of coping and solving problems, different communication patterns. Under stress, some families are strengthened, others are weakened. But one thing is clear; they all change. This article/speech is focused on the child having the special needs, but the issues are generic and are interchangeable with any family member.

Disability and chronic illness can lock family members into rigid roles. Most typically the mother becomes the primary caretaker. She, more often than any other family member, struggles with the problems 24 hours a day. Often she is the "designated worrier" for the family. She is the one who becomes most informed about the medical and educational needs of the child. Too often other family members fall behind in their understanding of what is going on. Also, she is often the primary nurturer for the impacted child. She can become isolated and lonely and feel great resentment she must often solve the problems alone. Unless open communication is maintained with her husband -- assuming they are still married -- a wedge may be driven between the two. A mother might become so connected with the child that sometimes she will not let others help her out, and mother and child become too close. Thus her obvious expertise can be a two edged sword unless she finds adequate support and assistance.

Fathers are usually the family providers and often have limited perceptions of the roles they can play in regards to the sick or disabled child. Men are traditionally breadwinners, and having a child with special needs may exaggerate that role. Almost all men have been steeped in being strong, protective, competitive, in control and self-sufficient. Feelings are often kept inside. While there is nothing inherently negative about these roles, they do not work when you have a child who has serious health needs. Dads often cannot protect their families from the problems or control the outcomes, and their self-sufficiency often means they don’t know what to do with the strong feelings that rage inside of them. A Nevada father, Kenneth Braker, illustrates these ideas eloquently when he remarks, "If we could only learn to share readily the things that are stored up deep within; then we could possibly avoid the tragedy of stumbling over our own hurt and get on with the task of helping those who need us." Self-esteem is likely to be lowered. Yet many men are also discovering they don’t need to be limited by old stereotypes of what they "should" be. They have gained increased understanding about the importance of bonding with their children, accepting the realities of the problems at hand, and being an active problem-solver for the children’s needs. Dale Loftis states, "We don’t have to pretend to be so strong. We can admit that life does hurt sometimes, that my child does have some problems, that I have lost that perfect child of my dreams. Having admitted this, I am now free. Free to meet the challenges of tomorrow. Free to be excited about even the smallest progress. Free to make those adjustments necessary to give my son the best family I can give, to be the best Dad I can be."

Siblings living in a home with a sister or brother with special needs adds another dimension to growing up that their peers don’t experience. Helen Featherstone, in a remarkable book, A Difference in the Family, states that:

"....a handicap inevitably changes the experiences of each child in the family, but exceptional families offer normal children unusual opportunities as well as unusual problems.... Their needs resemble ours... but they stand in a different relationship to the disabled child, being brothers and sisters, not mothers and fathers. Their fears and feelings, though they parallel ours, are not the same. They may identify far more closely with their handicapped sibling than we do, because he or she resembles them more closely, because the wider world sees them through one lens. They vacillate more often between conflicting loyalties to friends and families."

Some of the unusual problems siblings of children with special health needs often experience include overidentification with the sick or disabled child. They may even fantasize they were the cause of their brother or sister’s illness. They wonder when they will get sick themselves, or when they get married whether their children will become ill. Siblings have dropped out of clubs, lowered their grade points, lost friendships, all so they could "identify" with their brother or sister. They also experience guilt; their good health is in stark contrast to the special needs of their sibling. They might secretly wish they were the sick or disabled one, particularly if they see their brother or sister getting so much attention.

Siblings often have concerns about the future. What if their brother or sister does not improve? Who will take care of him or her when he/she gets older? Perhaps foolish concerns to adults, but not to children. There is often resentment about the time and energy that go to the special needs family member. Many siblings have been told they should not complain because they have been "blessed with good health." They resent that they are often asked to pick up much of the caretaking chores themselves. Daughters are sometimes asked to be surrogate mothers. They begrudge that often there is pressure to achieve, to make up for what the sick child cannot accomplish. And they dislike that there is sometimes a "double standard" in the family; the special needs child can get away with behavior the other children cannot. Children with special health needs might use their illness or disability to manipulate their parents; the siblings see this and confused messages are sent out. They may act out in a cauldron of explosive emotions.

Unfortunately too many siblings are often not given much information about what is happening to their brothers and sisters. Having active imaginations, they can make up stories far worse than the truth. One major study has shown that as high as 80% of all families do not discuss the illness/disability with other family members. This lack of information has a very powerful -- and very negative -- affect on the family.

Single parents often face overwhelming emotional and financial concerns. Too often grandparents, aunts, uncles, neighbors are forgotten. As families we all have JRA, Down Syndrome, Cerebral Palsy -- the emotional kind. Illness and disability is about the entire family. We are all members of the mobile. Families experience bewildering times. They wonder if they are losing their minds, and getting through the rough days, weeks and even years takes resilience and grit.

How do we best assist families in managing the stresses in their lives? It is imperative we view families in a different context. They are certainly individuals with unique and specific needs, but they are also endeavoring to make sense out of what is happening to their family unit. Given adequate resources and support, families are generally very resilient, able to find creative solutions to even their most difficult problems.

Families must work very hard to avoid blame, as this only serves to damage family well being. Above all, they need to communicate, talk with each other, even when that is the last thing they want to do. They need to share fears, resentments, confusions and concerns. All family members must continually grieve for their losses, for the son or daughter, brother or sister, nephew or niece who does not fit the ideal they always longed for. Families must work to let go of preconceived expectations and come to an understanding that their lives will move in directions never expected. Families will literally redefine themselves, and their new definitions will often be filled with extraordinary grace and understanding.

Lastly, and perhaps most importantly, families must surround themselves with supportive people. They need not go it alone. Research makes it clear that when families find support, fatigue and depression lessen, communication improves, abuse is contained and self-esteem returns.

Physicians, health and education practitioners are given tremendous power, and families often underestimate their own knowledge and expertise. It is critical we work together. We are entering a new era of family-centered, culturally competent, community based service delivery, an era which views families as "experts" in collaboration with professionals. We need each other; we need not be in competition. It is imperative we develop a cooperative, transdisciplinary approach to health care and education, where the emphasis is on the relationship and well being of all family members. To support the family is to support the child. Family-centered care involves the following:

-Recognizing that the family is the constant in a child’s life while the service systems and personnel within those systems fluctuate.

-Facilitating parent/professional collaboration at all levels of health care (and education).

-Honoring the racial, ethnic, cultural, and socioeconomic diversity of families.

-Recognizing family strengths and individuality and respecting different methods of coping.

-Sharing with parents, on a continuing basis and in a supportive manner, complete and unbiased information.

-Encouraging and facilitating and family-to-family support and networking.

-Understanding and incorporating the development needs of infants, children, and adolescents and their families into health care systems.

-Implementing comprehensive policies and programs that provide emotional and financial support to meet the needs of families.

-Assurance that the design of health care delivery systems is flexible, accessible, and responsive to family needs. (Shelton, Jeppson & Johnson, 1987)

To implement the above is an enormous task. But we must also understand that the power of healing does not occur only in the physician’s or practitioner’s office. In my late 30’s I attended graduate school in counseling. We were given an assignment to talk to our parents about a traumatic event that occurred in our family when we were young. My mind immediately flashed to my contracting arthritis at age 14. With some trepidation I called my dad (my mother had passed away by that time) and asked him if I could come over and talk about how it had been for him when I first became ill. He was agreeable to that, but he felt there really was not much to discuss; a half hour, forty five minutes would do.

We were both very nervous anticipating the discussion about to occur. In as non-threatening a manner as possible, I asked him what he remembered about that time. It was as if I had tapped into an incredible wellspring of feeling and memories. His first words were, "I’m sorry, I failed you as a father." His guilt, even after all these years, was immense. He just didn’t know what to do except work harder, make more money, and be the best provider he could be. Whereas I thought he didn’t care; in truth he couldn’t care enough. We talked more than eight hours a day, and forgiveness and understanding began to take place, more than 20 years later. Our family and my relationship with my father truly could begin to grow together rather than apart.

The goal for all of us -- family members and professionals -- is to keep the mobile in balance, to foster growth and healing, not isolation and despair. Graham Greene, in his novel, The Power and the Glory, says "there is always one moment...when the door opens and lets the future in." As families and professionals we need to fling open the doors and support families in the most loving, supportive means possible.

REFERENCES

Hudgens, Arletta. (1979). Family oriented treatment of chronic pain. Marital and Family Therapy, 5, 67-78.

Featherstone, Helen. (1980). A Difference in the Family: Life with a Disabled Child, Helen Featherstone. New York: Basic Books,
173- 174.

Shelton, Terri; Jeppson, Elizabeth; Johnson, Beverley. (1987). Family- Centered Care for Children with Special Health Care Needs. Bethesda, MD: Association for the Care of Children’s Health.


This speech was published in the Journal of Rheumatology, Spring, 1992. We thank them for their permission to reprint this article.

© 1992 - All rights to this text belong to James May, jmay@seanet.com