'No Casserole' Illness
Losing the battle with my morning headache, I awoke late one morning to see this email from a complete stranger (names have been changed to protect anonymity).
“My 26 year old daughter [Mary] is back in the hospital… As a parent I feel so helpless. Thank you for helping to bring it out of the shadows. My daughter would rather die than to live with the side effects of medication… help us, please… [John].”
Because of my dual role as mental health blogger and National Alliance on Mental Illness (NAMI) presenter, after a few phone calls, I was able to leave a message with the NAMI coordinator for John’s county chapter. She called me back as I was finishing up my exercises. She said she would contact John. As I was getting dressed, John emailed me back.
“Thank you Danei for responding. I got a call from the local NAMI chapter member … Yes I will ask her in an hour about sharing cell phone numbers… Thank you. John.”
Now, I knew John and his family would not have to walk this excruciating road alone. “We have a safety net around John and his family,” I reminded myself as I pulled out of my driveway later that afternoon. With a tremendous sense of relief, I was able to drive with tears glistening in my eyes. A wise friend was right, “Once a person has stood that close to the edge, it never goes away. You’re always aware of the darkness that stands nearby.” Now, I knew John and his family would not have to walk this excruciating road alone.
But why me? A stranger?
As I was pulling onto I-275 South, I gritted my teeth in the familiar frustration of traffic, while thinking, “Why did he have to contact a stranger?” Don’t get me wrong. I was humbled that John thought to contact me. In a heartbeat, I knew I would willingly help anyone suffering in silence. I know what it’s like to stand at that abyss. I have vowed not to lose a life.
Taking the highway to downtown, thoughts plagued my mind, “Let’s face it. If John’s daughter had been in a car accident, their friends and family would have circled the wagons and started around the clock food and support for John and his family. Not in the case of a mental illness.” I remember the article called “Changing the ‘No Casserole’ Response to Mental Illness” by Dr. David Sack in his March 2015 Psychology Today blog.
“A mother of two who is active in the International Bipolar Foundation shared a story the other day. When her youngest daughter was diagnosed with diabetes, friends called, sent cards and flowers, brought food, and posted encouraging Facebook messages. When her eldest daughter was diagnosed with bipolar disorder a few years earlier, however, the family got a different response: silence. “It’s known as the ‘no casserole’ illness,” she explained.”
“The no casserole illness,” I thought to myself disheartened. “We live in the 21st century when scientist have found at least one gene related to mental illness (XIST gene located on the dormant X chromosome) and the potential for a blood test for depression, why are we treating mental illness like the plague?”
John and his family are going through a time of high stress, according to the Stress in America: The Impact of Discrimination, a report released by the American Psychological Association. In this survey, adults who receive emotional support report lower stress levels than those who said they receive no emotional support.
Why do we do this to those we care about?
I was reminded of what Dr. Sack said:
“With that anecdote, we get to the heart of what’s wrong with our reaction to mental illness. When someone is diagnosed with a ‘physical’ ailment, we offer our support and encouragement. When the illness is mental, however, we all too often turn away, just when we’re needed most. It’s a response that has its roots in the stigma surrounding mental illness – stigma that’s been fed by fear and ignorance that few of us take pains to overcome unless we’re personally affected. As a result, those suffering with issues such as bipolar disorder, depression, anxiety, obsessive-compulsive disorder, schizophrenia and PTSD — tens of millions of us, according to National Institute of Mental Health statistics — often find themselves struggling not just with their illness but also with a sense of shame and abandonment.”
“I know what that feels like,” I thought to myself navigating downtown traffic. “That is why I am so adamant reducing stigma and by my example I hope I give people the confidence to step forward and tell their stories.”
Liz Szabo, of USA Today in her article, “Cost of Not Caring: Stigma Set in Stone” mentioned Pastor Rick Warren, a best-selling author, founder of Saddleback Community Church in Orange County, Calif., who began speaking out about mental illness after his son Matthew killed himself at age 27. Warren compares the stigma of mental illness to that of AIDS and HIV.
“In both cases, people are blamed for bringing suffering upon themselves, he says. ‘If I have diabetes, there is no stigma to that,’ says Warren, who is making mental health one of his key ministries. ‘But if my brain doesn’t work, why am I supposed to be ashamed of that? It’s just another organ. People will readily admit to taking medicine for high blood pressure, but if I am taking medication for some kind of mental problem I’m having, I’m supposed to hide that.’”
“With people like The First Lady, Michelle Obama; the Royals of England and singers like Demi Lovato on our side, we are changing the tide,” I thought to myself as I walked onto the U.C. campus. “Through Challenge the Storm and NAMI, I am also doing my part.”
According to research, “getting to know someone who has lived both the pain of illness and the resilience of a recovery journey changes hearts and minds, which leads to actions of inclusion, support and hope. And getting to know many people and their stories has the broadest and longest lasting impact.”
When it was my turn to speak as we began our “In Our Own Voice” presentation, I stood up in front a sea of strangers and said, “Hi! My Name is Danei Edelen. I enjoy writing, exercising and learning about nutrition. My dark days began when I went five nights without sleep, started hallucinating and checked myself into a psych ward…” The power of organizations like Challenge the Storm and NAMI is far greater than one may imagine. The simple act of reaching out that day may have saved the life of John’s daughter.
Author’s Postscript: After a week in the hospital the doctor found the right cocktail of medications for Mary without the dreaded side-effects. Also, Mary told me she realized, “Mental illness is a disease.” She has started her new job, is learning to manage her illness and reclaim her life. It is gratifying to see her blossom.
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