Alternative Facts, Fake Truths and Mental Health: Are You Kidding Me?
September 26, 2018
September 26, 2018
When my son was 8 years old, his psychiatrist taught me to say, “My eyes don’t see that, honey.” I said it when he confused his imagination and reality. I said it when he wasn’t sure what was real. I said it when he needed to know what was rock solid actuality and what was not.
His uncertainty about what was real had begun when he was in preschool. Some days I would pick him up and he’d ask me to sing a song we had learned together in preschool class. I’d say, “I wasn’t there, remember?” He’d think for a minute, and sometimes he’d agree. But not always. It was cute but also a little worrisome in its frequency and his intensity about it. It didn’t go away as he got older. It simply changed into different forms.
He would insist that he personally knew characters in cartoons or on television. He was quite sure he had lived events he’d only heard about. Then came the day when the numbers on his math paper turned into piranhas swimming on the page. It terrified him so much, he couldn’t touch the desk. He was eight.
He was a little boy with a big, scary mental health problem. Sometimes the doctors said it was psychosis, sometimes they said it was mania. Some even said he had a vivid imagination, but they stopped saying that after a few months.
He needed the people he trusted to say that, “No, there is no monster with one eye looking at us. That must be your eyes seeing things I don’t see.” He needed people he loved to say, “That villain in the movie did not appear in the living room.” Instead, I said that the villain was not allowed to leave the movie screen. He needed certainty and unshakable facts. Without them, his fear and anxiety paralyzed or incapacitated him.
I never knew when a fact had to be verified for him and verified in the exact same way. But I got good at it, keeping it simple with no embellishments. I got good at telling him that the truth was the truth just as moms everywhere do. Except we weren’t talking about little white lies that a child might tell, we were talking about something far more important. He needed my certainty to become his so he could trust his world that day. We all got on the same page on this, his teachers, his therapist, his doctor, and his family. Without that, his anxiety zoomed to the stratosphere.
Not long ago, I saw someone I know on a national television show. She has a brother with schizophrenia and yet she talked about alternative facts as if they were a thing. A real live, acceptable, incontrovertible thing. I looked at the television screen dumbfounded. Yet, it’s easy to let terms like “alternative facts” or “fake” or “fake news” slip by us with an eye roll or shake of the head. Or let them weasel their way into our vocabulary, like the person I saw on television.
Parents of children with emotional and mental health issues live with uncertainty and ambiguity every day. We don’t know when our child opens his eyes in the morning how the day will go. We don’t know if this service will actually work or that treatment will make a real difference. We chafe against this kind of uncertainty but we learn to accept it (mostly) as part of our everyday life.
But we need all the knowledge, statistics, and facts we can get. We hang on to them as we build our new normal. We learn to discern true expertise and, when we find it, we are thrilled by it. We might not always agree with it, but we respect it and are glad it’s there. We don’t heap scorn or contempt on it as if it’s ‘only’ someone’s opinion, say about climate change or the value of a work of art. We know that expertise is a close cousin to facts, yet not quite the same since it has the expert’s perspective woven into it. That’s okay since we have our point of view too.
I’ve always been a huge believer in telling the truth even when it’s hard, inconvenient or unpopular. After my son began having problems I realized his mental health and his ability to trust depended mightily on it. I also came to understand that my expertise was built on a combination of hard-won knowledge and experience. There is a lot of value in both my expertise and the experts we rely on to provide care.
Truth is not negotiable for me or my son. It shouldn’t be negotiable for any of us. There isn’t any alternative.
Read more of Lisa Lamberts blog posts on the Parent/Professional Advocacy League website!
Lisa Lambert is the executive director of Parent/Professional Advocacy League (PPAL), a statewide, family-run, grassroots nonprofit organization based in Boston. Lisa serves on the Advisory Council for the Children’s Mental Health Network.
Lisa became involved in children’s mental health as an advocate for her young son in 1989 through the CASSP family network in California. After moving back to Massachusetts, she began supporting families whose children and youth had behavioral health needs. She became involved with PPAL, first on a regional level and then on a statewide level. Her areas of expertise include mental health policy, systems advocacy and family-driven research.
Realizing that individual parent and youth stories need to be supported by data, Lisa authored several family-driven studies which highlighted the challenges families encountered when accessing services, their perspectives on psychotropic medications and the training needs of family partners. Lisa has been instrumental in working with local and national media to highlight the concerns of families and youth. She is dedicated to ensuring that family voice is included in every state and national conversation about the policies, practices or services that impact them.