It’s a common experience: Something goes wrong in a family. A child is diagnosed with a chronic illness or a disability. Maybe he or she gets into serious trouble.
You’d think friends would draw closer at times like those. Many drift away instead.
“When my 3-month-old son was diagnosed with intellectual disability last year, lots of our friends just seemed to disappear. We’ve been caught up in his care, so I guess we don’t reach out much. But it would be real nice if they reached in.” Tom, knowing I was working on this article, spoke to me after playgroup.
Katie’s words during another conversation echo many parents’ pain. “Our 15-year-old daughter started stealing from our friends. At first it was little stuff — a lipstick, a pad of sticky notes. Then it moved to jewelry and money. It turns out she was selling the stuff to support a drug habit. Our friends stopped inviting our family over. That’s understandable. But then they stopped calling. I don’t get it.”
Josh is equally bewildered. “When our son was first diagnosed with cancer, his friends came around often and our friends were really there for us. The treatments have been going on for three years now. His friends don’t call very much anymore. We’re down to two really close friends who are hanging in there with us.”
Amanda was trembling as she talked to me. Her 19-year-old daughter was diagnosed with schizophrenia last year. “During her breakdown she lied about many things to many people and caused quite a bit of drama among her friends. Now my friends seem to have forgotten us. Where did they go?”
Families like these feel abandoned but are generally too stressed with the demands of taking care of the child and managing the complexity of the medical, legal or educational systems to give it much attention. All they can do is cope. What goes on that friends, even people they thought were good friends, stop coming around?
I think it has something to do with the lack of commonly understood rituals for persistent stress or sustained grief. As a culture, Americans do better with the finality of death. There are religious and cultural conventions for observing the passing of loved ones. People attend ceremonies or memorial events, send cards and flowers, make donations to the person’s favorite charity, and bring casseroles. There is usually enormous support for the first weeks and months after a death and often a more quiet acknowledgment among good friends for years afterwards.
The same isn’t true when the “loss” isn’t final or the stress is ongoing. There are no cards that acknowledge when an illness or family crisis becomes a continual challenge. There are no ceremonies for when the child’s and the family’s life is changed for years, perhaps forever. We have no rituals for the grief that keeps on giving or the stress that becomes a way of life.
In 1967, Simon Olshansky coined the term “chronic sorrow.” He was speaking specifically about the family’s response when a child is diagnosed with a developmental disability. He suggested that however much a family embraces the child they have, they are nonetheless repeatedly confronted with the “loss” of the child, and the life, they thought they would get. At each new developmental phase, parents are again brought up against the diagnosis and again acutely relive their initial grief. Watching friends’ children progress normally through the ages and stages makes the struggles and deficiencies of their own children painfully obvious and real.
For such parents, the pain from realizing their child is out of step with peers is interspersed with longer periods of feeling okay but stretched to periods of low-grade sorrow. Even while we love our children and celebrate whatever successes they may accomplish, the knowledge of their problems and the worries for their future linger in the background. The process rarely stops.
Although Olshansky was speaking specifically about families of kids with developmental disabilities, life is much the same for any family dealing with any perpetual issue. Friends of families dealing with “chronic sorrow” or chronic stress often don’t know how to react. The rituals that surround the finality of death don’t apply. The affected family may become so preoccupied or overwhelmed that they seem out of reach.
Some friends take it personally. They feel rejected when they don’t get included in the conversations and decisions about care and go away hurt or mad. Others have an irrational fear of the diagnosis or problem and worry that it’s “catching.” Still others feel helpless to deal with their friend’s stress. Not knowing what to say or do, they do nothing at all. Those who have moral judgments about the child’s illness or behavior or who are uncomfortable being in a hospital or sick room or courtroom are even more challenged. Still others are distracted by their own problems and can’t find the energy to support their friends. Whatever their good intentions, it’s no wonder these folks gradually fade out of the family’s support system.
It’s important for the affected family not to take it personally, even though it feels terribly personal. Such seemingly “fair-weather friends” can be invited back into our lives. It’s important to give them the benefit of the doubt. Maybe they didn’t want to be a bother. Perhaps they thought that no contact is better than doing something wrong. Not being mindreaders, they may not have known what kind of help would be welcome. If they are struggling themselves, they may need to be reassured that we don’t expect them to solve the problem or to become a major player in our child’s care.
Yes, it feels unfair to have to take care of friendships when a family already has too much to think about. But people really do need people, especially in time of need. It’s an important part of self-care to ask for support. Becoming isolated and overwhelmed makes it more likely that parents will become exhausted or sick and may be unable to provide enough support to the sick or troubled child.
Fortunately, there are usually a couple of friends who don’t need to be told and reminded. They can be our best allies in keeping in touch with everyone else. Those good friends can also help other friends know what is needed and how to be supportive instead of intrusive. Fortunately, most people respond generously and sympathetically once they understand that an affected family’s withdrawal isn’t about them.
And fortunately, there are support groups of other families for just about every illness and problem life can dish out. There’s nothing quite so affirming as talking with people who are dealing with the same sorts of things. These new friends can fill a need for understanding that old friends maybe can’t.