Maybe I should have seen it coming. I had a parent and a sibling diagnosed with bipolar disorder, and another sibling with schizoaffective disorder
. I have seen some of my nieces and nephews struggle with mental health and have faced my own problems with depression and anxiety. I’m also a licensed social worker with more than 35 years of experience in mental health and related fields.
When I became a parent at 38, I hoped for the best for my children’s mental health, but thought I was ready in case the worst should happen. I knew the risk in the family gene pool, but once my kids were born, so lively and bright and seemingly healthy, I thought that nothing bad could ever happen to either one of them. They seemed so perfect. I was sure the mental health problems that plagued so many close to me would pass over my own children.
Social worker, son, sibling, uncle, friend of someone with a mental health disorder—throughout a lifetime of exposure to mental illness, I had pretty much mastered all those roles. The role of parent was something altogether new and different for me. It was also devastating, once the signs of mental illness started popping up. Nothing prepares a parent for the discovery that their child has a mental illness.
When Being an Expert is Not Enough
I am considered an expert on mental health in my community. Parents from other towns and counties would call me up, pouring out their grief and asking me in desperation what they could do to help their son or daughter. I didn’t always have the answer, but I could always offer hope.
I had seen how treatment methods had improved over the years along with the possibility of recovery for people living with mental illness. And yet, when I became a parent of a child with mental illness, I was just like all those parents who had turned to me for help in their moment of desperation. I went through all the same phases:
: telling myself that this was all a mistake; that a simple explanation would reveal itself and the problem would just go away.
: reacting against the unfairness of life that this should happen to my child who had done nothing to deserve it and to me, who had done so much to help others in this situation.
: grieving for the shattered vision of the happy life I imagined for my child.
: not knowing where to turn for support or what to do to help my child.
: believing that it was not just genes, but my failings as a parent that caused this problem in my child.
: internalizing the stigma that still surrounds mental health problems even though I felt I should know better.
: not knowing what would happen to my child; whether he or she’d be safe and how we would manage the enormous cost of care—financial, moral and emotional.
: feeling that my child, wife, and I would always be in pain that would never go away.
As parents, we have two basic hopes for our children: for them to be happy and to eventually become self-sufficient. The appearance of mental illness early in life can create doubt for those hopes. I strongly believe that people diagnosed with mental health conditions can live fully rewarding lives of value, meaning and self-determination. But as a parent I also know feelings of helplessness, despair and doubt.
Families Helping Families Through the Cycle of Discovery
One thing that surprised me about my journey as a parent is how much I sought and relied on the opinions of experts. When your child faces a serious health problem, mental or otherwise, you seek out the best care available. That’s why so many bewildered, frightened parents turned to me for help. I did not always feel like the expert, but I tried my best to point them in the right direction.
Later, when a problem struck my family, I was astounded to find myself in a role reversal. Now I was the one seeking expert guidance. It took my wife and I several years to put the best team in place: the right psychiatrist, therapist, advocates and support professionals for my family. This is what I call the “cycle of discovery,” the time it takes to identify a problem, understand the causes, and put together the right combination of services and treatment.
It was not just my background in mental health or the contacts in my professional network that helped us survive the period of discovery. It was families, too; other parents who had walked this path before us and were able to provide the name of a trusted doctor or therapist, give us tips for handling local school officials, and offer the simple reassurance of having been there, too.
My children are adults now, working towards their own sense of self-sufficiency and fulfillment in life. I can’t say that my journey as a parent will ever come to a conclusion, but I feel very fortunate at this stage in my life to do the work I do, helping other families through their cycle of discovery as I was once helped through mine.
Jay Boll is Vice President of Laurel House, Inc., and Editor in Chief of www.rtor.org. He writes the Viewpoint column for Esperanza Magazine – Hope to Cope with Anxiety and Depression and writes about family and young adult mental health in his blog The Family Side.
We’re always accepting submissions to the NAMI Blog! We feature the latest research, stories of recovery, ways to end stigma and strategies for living well with mental illness. Most importantly: We feature your voices.
Check out our Submission Guidelines for more information.