A Fresno mother shares her journey with schizophrenia advocacy

Yahoo

4 days ago

Editor's note: This op-ed contains mentions of suicide and mental illness. If you or someone you know is in crisis, call or text 988 to the Suicide & Crisis Lifeline.
My son died of schizophrenia when he took his own life at the age of 32.
I first heard that term 'schizophrenia' applied to my child when he was 22. A psychiatrist sat opposite me at a huge empty conference table and said the word.
The effect was total shock. But also total bewilderment.
I had considered myself an educated person, but that word, hanging in the air, was beyond my understanding. Where knowledge should have been I found only a blur of misconceptions and movie plots that led to one inevitable conclusion: I had caused this.
The doctor did not seem to feel that an explanation was required, so I was left on my own to learn about serious mental illness, a category with a blurry definition.
'Serious mental illness' is something that families come to recognize as we meet with other families facing similar problems. Touch points in our shared stories include involuntary psychiatric holds, jail, homelessness, refusal to shower and, of course, refusal to take medications. We talk about the voices our loved ones hear, the signals they receive — from cars, or cats, or grocery carts. Strangeness becomes familiar. We begin to believe we can't be shocked.
But I recently learned something that astonished me: An expert declare that more Americans have schizophrenia than have Type I diabetes.
That sounded ridiculous, so I looked it up — and it's true. Johns Hopkins says that about 1% of the population has schizophrenia, while Type I diabetes, according to the Centers for Disease Control and Prevention, is found in only 0.55% of the population.
Odd, then, that there's so much research on diabetes, but so little on schizophrenia. Odd, too, that medical approaches are so different for the two illnesses.
A diabetes diagnosis is likely to come with education, training and treatment, whereas a diagnosis of serious mental illness is a voyage into the abyss.
There are medical and legal reasons for this discrepancy. In past eras, mothers were the single medically acknowledged cause of schizophrenia. So that's the medical precedent that may have led us here.
On the legal side is patients'-rights legislation, well-intentioned law that can backfire for families like ours.
A family member trying to get treatment for a loved one with serious mental illness — the way a family member of someone with Type I diabetes would seek access to insulin — will undoubtedly be frustrated. One of the hallmark symptoms of serious mental illness is anosognosia, the inability to understand that one is ill.
Our loved ones with life-threatening illnesses are, by their own reckoning, not sick. Knowing themselves to be perfectly healthy, they logically refuse treatment. And this is where things get dicey, because this refusal is their legal right, even when it is clearly not in their best interest. They can be desperately ill but not meet the criteria for involuntary treatment. And there is nothing family members can do.
Jerri Clark is a mother whose attempts to get treatment for her son were futile. As she has explained in advocating for changes to the law, 'my son met criteria for involuntary treatment the moment that he stepped off the roof of a hotel and plunged to his death.'
Clark, now on staff at the Treatment Advocacy Center, is careful to use the wording 'no-fault diseases of the brain' when speaking of serious mental illness. 'No-fault' gets to a central problem in the world of serious mental illness, which is the impulse to blame someone — the patient, for exhibiting terrifying symptoms; the family, for having raised a person who now exhibits terrifying symptoms — for this disease.
When they do consent to treatment, our loved ones are most often still being treated with drugs developed in the '50s. Research on serious mental illness is scant.
John Snook, director of government relations at the National Association for Behavioral Healthcare, has warned about professional indifference to serious mental illness, despite alarming mortality rates. According to one study, the death rate among those with schizophrenia is four times higher than what is seen in the general population.
Snook and other advocates have worked long but so far fruitlessly to get schizophrenia classified as a brain disease like Parkinson's or Alzheimer's instead of as a mental illness.
'The science is clear,' Snook says. 'It's a neurological condition.'
Yes. It is. But treatment of our loved ones with serious mental illness does not yet reflect this reality.
This neurological condition deserves research, understanding and treatment.
Julia Copeland is a retired arts administrator who volunteers at her local National Alliance on Mental Illness office in Fresno.