The Shame of Mental Illness
We lost a beautiful loved one to mental illness over the weekend. With my son Jon’s diagnosis, I always thought the lack of help for him was due to his/our lack of financial resources, or his addictions, which made finding treatment more difficult, or even my failure as parent. But the loved one we lost this weekend had the resources, had no addictions, and had strong family support his entire life. They sought help for him continuously and ferociously, and yet the system FAILED them. The system failed HIM.
Why???? This is why I’m not okay. I’m angry.
The Shame of Mental Illness is NOT with the illness, NOT with the patient, NOT with their families – the Shame of Mental Illness is that NO ONE has answers, NO ONE can get help!
This should make all of us ANGRY.
The month of May is Mental Health May 5th is “Silence the Shame” Day to help bring awareness to the plague that is crippling our world right now – mental illness – and to help erase the stigma associated with mental illness.
I don’t answers either – I only have more questions. But we MUST do SOMETHING. We MUST stand in the gap. We MUST take action for those who can’t. We MUST talk about mental illness.
Read these facts from NAMI.org and let each one sink in:
Fast Facts
1 in 5 U.S. adults experience mental illness each year
1 in 20 U.S. adults experience serious mental illness each year
1 in 6 U.S. youth aged 6-17 experience a mental health disorder each year
50% of all lifetime mental illness begins by age 14, and 75% by age 24
Suicide is the 2nd leading cause of death among people aged 10-14
More statistics here.
Medical and mental professionals don’t know how to treat those with mental illness, law enforcement doesn’t know how to treat those with mental illness. Some people – some entities – still consider mental illness a crime.
Loved ones are at a loss because they/we seek help and can’t get the kind of help needed. And because many mental illnesses, like schizophrenia, are not detected or diagnosed until someone is in their mid-20s, parents and/or spouses cannot access the information they need to get help for their child or spouse, because of the child’s age and HIPPA laws.
HIPPA Laws and the Age of Mental Illness
These young adults with mental illness have the legal right to decide who has access to their information, or who does not, and who can or cannot make decisions about their care, and that’s usually where everything gets derailed, because the patient isn’t in their right mind, yet they’re expected to make all the mental care decisions for themselves, when they have no capacity to do so. It’s hard enough to navigate our medical system without having a mental impairment, yet that’s what is happening all across this country.
The one suffering from mental illness can be placed into a facility or hospital, usually for no more than 72 hours, for “therapy” and/or observation, usually after an episode of varying degrees. But most facilities and hospitals are so overrun and so ill-equipped to deal with mental health issues that nothing is ever accomplished.
Love / Hate Relationship with Therapy
Great therapists are awesome and life-saving. But therapists who aren’t great can cost lives.
My reason for the quotation marks around the word “therapy” above: Years ago, Jon spent 10 days in a facility – the longest he’d stayed in any. They decided to transfer him to another unit in another county, but on the way, they stopped for a bathroom break. Jon bailed from the vehicle and never returned to treatment. When I talked to his therapist to find out why he didn’t show up at the other facility, I mentioned his girlfriend, and the therapist, who’d been supposedly talking to him for 10 full days, didn’t know he had a girlfriend or any “outside” connections. How could a professional counsel someone for 10 days and not know about their life? I can stand in a grocery store line for 10 minutes and get those basics from a total stranger without trying very hard.
Another time, Jon was attending regular therapy sessions, and seemed to be making progress. He was holding down a job, taking prescribed medication, and seemed to be stable for the first time in a very long time. But the therapists determined that he had more mental illnesses than they’d originally diagnosed, so they decided he needed a new and expensive medication that had just hit the market. But to take that one new medicine, he had to come off the other medicines that were actually working first. They took him off the meds, and he’s never gone back to any. He soon became violent and dangerous, he did a lot of physical and emotional damage to family and property, and then he left the state. He’s been homeless and/or in jail ever since, for the past seven years.
Where do we go from here?
When we learned the news Sunday, I grieved for his parents, his siblings, his aunts, uncles, cousins. I grieved for his girlfriend and his friends. This should have never happened. He should have had help.
I’ve been thinking this was a national problem, that we should start at the top with our elected officials in DC. But going that route would take too long. We need to start on the state level to get more immediate action. To get the help they need for more loved ones before it’s too late.
Get involved on a local level. Contact your local representatives and talk to them about mental health care: costs, facilities, accessibilities, laws, education. Ply them with statistics, share your personal stories so that it becomes personal to the ones in power to make change.
We can no longer push mental illness under a rug and hope no one notices. It’s time to take action.
Mental Health Resources
One promising avenue to seek and explore: Dr. Daniel Amen has a new approach for treating and researching mental illness. Amen Clinics are in 11 locations around the country. His website has locations, resources, research, books, and more.
NAMI is another good resource. “NAMI is the National Alliance on Mental Illness, the nation’s largest grassroots mental health organization dedicated to building better lives for the millions of Americans affected by mental illness.”
NAMI offers various support groups in towns all over the country, groups for the mentally ill and groups for their loved ones. They have events to raise public awareness about mental illness, and they have “action centers” where you can get involved.
National Institute of Mental Health
Substance Abuse and Mental Health Services Administration