When your child is diagnosed with mental illness, not only do you grieve for the life that you expected for him or her, but also for the life that you planned for yourself.
All your relationships suddenly change. You find yourself in a lonely minority. It's a place filled with hospitals, medications, therapists and a whole new language in which you must become fluent if your child is to get the right care.
There are two parallel worlds for children. For the most part, kids start out on a common path that might be described as a typical childhood. If mental illness appears, however, the experience of childhood diverges onto two paths.
For neuro-typical children, childhood is composed of birthday parties, sports teams, sleepovers, SATs and planning for college. Life for kids who have a psychiatric illness is filled with appointments with their therapist, meetings with a psychiatrist, meds that might make them gain weight or make them feel sick, social skills club and perhaps occasional hospitalizations. At some point they may even attend a therapeutic school where the priority is therapy rather than education.
The gap between these two childhood paths is marked by a stigma and its effects are immediate and long-lasting.
If children with medical issues such as diabetes or cancer go off the conventional path for treatment, they are easily welcomed and integrated back into the mainstream. All during the crisis of illness, their families have strong support from their community. But, once a child moves onto the path of those with mental illness, the likelihood of rejoining the mainstream is very slim, which is one of the long-lasting impacts of stigma.
Although our children have both been hospitalized many times, tried multiple medications, left the public school system, tried numerous types of therapy and have suffered the loss of a typical childhood, they are courageous and forgiving. It requires courage each day to meet what to them is an unfriendly world with an open heart and to forget past slights, whether intentional or not. Their paths and experiences will not match those of their healthy peers. The challenge is to create a more hospitable environment that embraces and encourages them along their unique paths rather than causing them to be shunned and isolated.
Stigma comes from the isolation families feel when they cannot share the devastating news of the diagnosis and treatment for fear of not only their child being ostracized, but the family as a whole being excluded and judged. The judgment stems from the notion that parents of kids who do not have mental illness feel some sense of accomplishment that their beautiful offspring are growing successfully into the people they envisioned. Parents of kids on the psychiatric illness track feel a sense of blame and inadequacy that they were unable to prevent the illness and suffering of their child.
The most significant effect of stigma is deep loneliness and isolation felt by the child and family.
We have both experienced the time when the calls for play dates stop, the invitations to family parties and neighborhood barbecues dry up, and healthy siblings no longer invite friends over. Perhaps we add to our own isolation by editing information even to close friends for fear of having our parenting judged. Nonetheless, after returning home from admitting our children to the psychiatric hospital, our voice mail was not clogged with well wishes or neighborly concern. There were no casseroles waiting at our doorstep that no doubt would have appeared if our children were admitted for a medical condition.
Care and concern for those who are ill gets expressed in well-known ways, it is just a matter of extending that care and concern for all types of illness. Friends, family, neighbors and faith congregations frequently rally around families during a medical crisis with food, calls and visits as a way to demonstrate their love and concern.
We don't believe there is a lack of love and concern for those dealing with mental illness, just a need to demonstrate that love and concern. Reach out, make a meal, help with the carpool and don't be afraid to look your friend in the eye and ask how they are. That small kindness can make the difficult journey just a bit easier.
Sharon Brewer and Nancy Aker live with their families in West Hartford.Copyright © 2015, CT Now