Monday, March 23, 2015

Thoughts from a 40-Something Mom to All the 30-Something Moms who are Freaking Out about Internet Oversharing

Thou shalt not write about thy children online.
Photo courtesy of iceviking,
In 1994, when I was a senior in college, I searched the World Wide Web for the very first time. I still remember that Mosaic query: surfing conditions in Australia, a half a world away from Provo, Utah. The answer? A full report, including weather forecast, tides, and wave conditions. In that moment, I felt like I had won the Golden Ticket to Willy Wonka’s Knowledge Factory. This will change everything, I thought. I never once thought about trolls.

In 1994, you were ten years old. No one was thinking about what the Internet would mean for ten year olds.

In 1996, when I was a graduate student at UCLA, teaching assistants faced a daunting new requirement: virtual office hours.  The concept was so mysterious and misunderstood that some of my fellow students actually organized labor protests. But as a woman expecting her first child, I saw instead the potential to work from anywhere, which at the time seemed like an overwhelming positive. Maybe, with the help of a computer and a dial up modem, a mother could work from home, I thought.

In 1996, you were 12 years old. You were probably one of the 75 percent of public school students who were using the Internet for middle school research projects that year. In 20 years, working from home—or anywhere else, for that matter—would be your normal.

In 2001, I was a young work-at-home mother playing around with coding basic html websites, and a fleeting thought passed my mind: what if I could create a website to share pictures and updates of my two beautiful boys with our family and friends? A book editing project distracted me, though the idea never quite left my mind.

In 2001, you were 18 and headed to a very different college experience than the one I had a decade earlier.  In fact, the American Psychiatric Association reported that in 2001, one in ten college students was addicted to the Internet. A researcher explained the findings as follows:  "The sense of security afforded by the anonymity of the Internet provides some students with less risky opportunities for developing virtual relationships." (Ah, that sense of anonymity!)

In 2007, I joined Facebook so I could play Scrabble online with my siblings. I quickly realized that it was the perfect platform for that shelved idea of sharing pictures and updates of my now four beautiful children. I never once thought about privacy. Why would anyone other than people I knew and trusted want to look at my Facebook page? I also created my blog, The Anarchist Soccer Mom. I loved the idea of an anonymous forum where I could be candid about the challenges (and joys) of parenting—and those challenges were becoming increasingly hard as my second son failed to respond to treatments for his erratic behaviors, which we would learn (much later) were caused by his bipolar disorder. Did I worry that people would know it was me? Of course not. No one—then or now—reads your blog.

In 2007, you were 24, transitioning to an adulthood that was shaped by unlimited access to all kinds of information. Maybe you had just bought your first iPhone, a device that transformed not only the way we access and share information, but refashioned our entire culture. Your adult life was shaped by a knowledge of this “revolutionary and magical” tool—the all-knowing computer in your purse. Before you had children, you had time to experience both the wonder and the terror of this new constant connection to all of humanity’s combined wisdom and ignorance.

40-something moms like me did not have that same luxury. Our children were young—or just being born—when all this wonderful and terrifying new technology was unleashed on us. In the 1980s, parents proudly carried wallet-sized print photos of their children. In the late 2000s, we started posting pictures, by the thousands, of our children online. We sincerely thought that the audience for those Facebook albums was the same as the audience for our parents’ wallet photos.

In 2012, when you had young children of your own, you knew better. You spent your early adult years watching people do stupid things and go viral. You experienced, either personally or vicariously, the extreme public shaming that only the Internet can facilitate. And you didn’t want your children to experience that level of public shame, with good reason. Internet bullying is awful, pervasive, and sometimes even fatal

So you created a new word to describe your criticism of the 40-something moms who were constantly posting about their kids: oversharenting. And you created a new commandment of mommy righteousness: “Thou shalt not write about thy children online.”

In 2012, in a gut wrenching intersection of a personal tragedy with a very public one, I shared a painful story about my own family on my anonymous blog. Then, after a lengthy conversation with a close personal friend, I decided to allow him to republish it, with my name attached. My revelation that my son had mental illness and we didn’t know how to help him has become Exhibit A in more than one essay about parental oversharing. For example, in 2013, Phoebe Maltz Bovy described my essay, “I Am Adam Lanza’s Mother,” as “the most outlandish version of a popular genre: parental overshare.”

In the aftermath of my viral blog post, I thought long and hard about my children’s privacy, and I made some pretty significant changes to the way I post things about my children on social media. I don’t ever use their names now. I think carefully about the content of any message concerning them, and I use privacy settings to limit access to people who can see what I post. Although I love Instagram, I try to make sure my kids’ faces are not visible in the pictures I share there.

But I absolutely refuse to stop talking about my family’s struggles with mental illness. In the case of mental illness, or any illness, advocacy trumps privacy.

Every parent writer struggles with how to talk about his or her children. Emily Bazelon presciently took on this topic in 2008. Wondering whether her own revelations about her children’s lives were violating their privacy, she asked, “Should we all close our laptops once our kids learn to talk?”

In response to her question, one honest blogger told her that he “mostly saw my hand-wringing over the ethics of writing about my kids as the result of ‘the same narcissistic impulse that causes us to write about our families in the first place. Because most people don't care what we write.’” 

This is a fact. If you write about your kids, or post their adorable pictures on social media, most people won’t read what you write. And your intended audience—real-life friends and family—are likely to appreciate your posts and feel more connected to you. I don’t see how that’s any more harmful to your children and their privacy than an annual holiday letter, and those have been around for a while.

But I also understand the privacy advocates who worry about what happens if people do in fact read what you write. Quite a few people read what I wrote about my son on December 14, 2012. More than four million, in fact.

My chief complaint with people who use me as an example of oversharing is quite simple: they all contend that what I wrote about my son was damaging to him or his future.

And that’s not even close to true.

I wish that Abby Phillip of the Washington Post had actually reached out to me to discuss the consequences of what she calls “oversharenting” when she quoted my blog. In our case, sharing our story had more positive than negative outcomes. Because I spoke up, my son got effective treatment and is now back in a mainstream school with friends who are totally fine with his bipolar disorder. In fact, they—and I—admire his self-advocacy and think he is brave for speaking out and sharing his story. We were also able to connect to an amazing community of mental health advocates. No one has ever approached us in the grocery store and said, “I know who you are. You’re that mom and kid who talked about mental illness after Newtown. You are horrible people.” It doesn’t work that way.

Google “oversharing child cancer” and see if you can find criticism of mothers who post about their children who have cancer on social media. (I couldn’t). Why was my alleged oversharing potentially damaging to my son’s future? Because we should be ashamed of his illness? Or because the writers who criticize me are ignorant about mental illness?

Would you like to know what is actually damaging to my son and his future?
  1. The appalling lack of access to mental health care for children and families.
  2. Our society’s decision to send children and adults with mental illness to prison.
  3. The stigma we perpetuate when we respond sympathetically to a mom who writes about her child’s struggle with cancer but cry “oversharing!” when a mom talks about her child’s struggle with bipolar disorder.

These struggles—cancer and mental illness—are only different because the second mom will have tremendous difficulty both in getting people to care and in getting access to care.

Even Hanna Rosin, one of my most vocal critics after my blog post went viral, finally got this last point after she researched and wrote a moving piece on Kelli Stapleton, who will spend ten years in prison after a failed attempt to kill herself and her then 12-year old daughter, who has autism. 

When I suggested on Twitter that Rosin’s thinking had evolved on the subject of parents who advocate for their children with mental illness, she responded, “For sure. I really didn’t get it until I read your book and talked to Kelli.”

Now, in 2015, I share the most important and relevant portions of my family’s story, with my children’s permission, in every place I can.

And this is my heartfelt request to you, 30-something moms: keep sharing, especially if your child has an illness that can benefit from awareness and advocacy. Parents of special needs children actually rely on Facebook for much-needed support. You never know when sharing your experiences might change someone's heart and help to heal a mind.

Tuesday, March 17, 2015

People with Mental Illness Should Get What They Deserve

What if we treated cancer like we treat serious mental illness?
And what they—and we--deserve is treatment before tragedy.

You’re sitting in your family doctor’s office with your child, waiting. Your child fidgets, trying not to bite his fingernails. Your stomach is tight with worry, and you can’t meet each other’s eyes.

“Do you think it’s serious?” your baby finally asks. “I’m trying, Mom. I’m really trying.”

The door opens. Instead of the expected reassuring doctor in a white coat, you see a police officer, holding out a pair of shiny steel handcuffs.

“I’m sorry to tell you this,” the police officer says. “But your child has leukemia. We are going to need to take him into custody.”

What if we treated cancer like we treat serious mental illness?

Like many people who become mental health advocates, I arrived in this role entirely by accident. When my second son’s increasingly erratic and even dangerous behavior was finally diagnosed as bipolar disorder, he had already been in juvenile detention four times, and he had three stays in an acute care mental hospital. He was only 13 years old.

I did not know how to help him then. But I did know one thing for sure: my son was not a bad kid. He had behavioral symptoms of a brain disorder that had been with him since birth.

As a result of those behavioral symptoms, my son and many other children are sent to jail.

As I fought for justice for my own child, I learned that we were not alone in our struggle. All across America, children and adults with serious mental illness were being sent to jail because of their illness.

What if we treated cancer like we treat serious mental illness?

Treated, my son is just like anyone else. And yet when a child who brought a gun to school in Montana was diagnosed with bipolar disorder and treated, he was denied re-entry to the public education system. This child is likely to join hundreds of thousands of other children with serious emotional disturbance diagnoses who have ended up in the school-to-prison pipeline.

Do you think that 12-year olds with serious mental illness should be tried as adults instead of receiving treatment? That is exactly what is happening right now in Wisconsin with the Slenderman case.

Do you think that people who clearly committed their "crimes" while in the throes of psychosis should be executed? In our society, we’ve practically made that an expectation.

The way we “manage” serious mental illness is both expensive and immoral. So why do we keep sending sick people to jail instead of providing them with life-changing treatment?

I’ve come to an uncomfortable conclusion about how our society continues to ignore the obvious problem of serious mental illness. At some level, the fact is that we think people with serious mental illness deserve to go to jail. We tell ourselves that they deserve solitary confinement. They deserve homelessness. They deserve to be shot and killed by police. And because they are getting what we think they deserve, it's okay for us to turn away.

I can’t help but come to this conclusion as states everywhere (including mine) slash their mental healthcare budgets and services while leaving law enforcement and the criminal justice system to clean up the awful mess.

How do you stigmatize a medical condition? Make it a crime.

I’m ashamed—not of my son and the millions of people like him who are courageously living the best lives they can despite significant challenges. I’m ashamed of the rest of us, who tell ourselves that “those people” got what they deserved. We don’t want those “weird kids” in our children’s classrooms. We don’t accept that with the right supports, people can manage their diagnoses and live successful, productive lives in their communities. For those who cannot meet this worthy goal because their illness is too severe, we do not provide quality medical care, preferring instead the cold, harsh reality of a jail cell and solitary confinement.

At some level, we are all accountable for our failure to extend compassion and care to the sickest among us. We are all Adam Lanza’s mother, unable to acknowledge that our sons and daughters need help, not blame and castigation.

To everyone reading this who would send a sick child to jail: shame on you,

To everyone reading this who lives in fear and ignorance of your brave friends and neighbors battling to live a “normal” life: shame on you.

We can do better. We must do better. Our children are depending on us as a society to provide treatment before tragedy. People with mental illness should finally get what they deserve: compassion, admiration, support, and hope.

Saturday, March 14, 2015

Maybe We All Need an Intervention

Dr. Phil’s #NickGordonIntervention highlights everything that’s wrong with how we view mental illness

I have to confess my shocking ignorance of popular culture: until I read this HuffPost article from Flawless Foundation director Janine Francolini calling out popular talk show host Dr. Phil, I had no idea who Nick Gordon was. And it doesn’t really matter who Nick Gordon is. What matters is the shocking and exploitative way a young man in mental health crisis was treated on national television, by a man who has tremendous power to shape public opinion about mental illness. 

I also have to confess that I have never seen Dr. Phil’s show, so I have not watched the infamous so-called “intervention.” But a friend of mine whose child was in crisis reached out to him seeking help for her out-of-control son. What she got instead was more of the same “shame and blame” that makes it so hard to parents of children who have mental illness to reach out and get the help they and their families desperately need. In one video clip I did see, my mom friend laughed nervously at her son’s explosive behavior. Dr. Phil chastised her, telling her that her cavalier attitude was contributing to her child’s problems. Newsflash, Dr. Phil: we laugh when our children lash out because we’re trying not to cry. And our children’s mental illness is not “our fault,” any more than a child’s cancer is the parents’ fault.

Dr. Phil McGraw describes himself on his website as “perhaps the most well-known mental health professional in the world.”  Since even I, a television-eschewing person who once thought that Anderson Cooper was a financial services firm, know who Dr. Phil is, I’d say that statement is quite probably true. I wish that Dr. Allen Frances or Dr. Jeffrey Lieberman or Dr. Paul Summergrad, all of whom are actual psychiatrists (unlike McGraw, whose Ph.D. is in clinical psychology) were the world's best known mental health professionals. The fact that these brilliant practitioners don’t have their own popular television talk shows speaks volumes about the problems with mental healthcare in America. As The Daily Beast’s Kevin Fallon aptly observed about McGraw’s show, “Such a crudely manufactured look at someone else’s pain is numbing where it is intended to be affecting.” 

Numbing. That is exactly the problem with mental health advocacy today. After Sandy Hook, the general public has become so numb to the horrific pain that people like Nick Gordon (and so many others) are experiencing that things like school shootings barely register anymore. When mental illness is nothing more than a spectacle for our entertainment, we become desensitized. We stop caring for those who need our care the most.

Maybe it’s time for society to have a collective intervention about the way we treat mental illness. Stop criminalizing people who are sick. Stop making suffering people into spectacles. Stop treating mental health differently than physical health.  Dr. Phil has famously said, “You either get it or you don’t.” I’m afraid when it comes to mental health and stigma, America’s best known mental health professional just does not get it. 

Friday, February 13, 2015

A Smoothie Won't Save My Child

Smoothies are undoubtedly delicious. But they don't cure
mental illness. Photo by Richard Dudley,
Why We Need Substantive Mental Health Reform Now

On Wednesday, February 11, 2015, I tuned in to C-SPAN to watch Representative Tim Murphy and the House Oversight and Investigations SubCommittee address concerns about a lack of leadership in mental health. The hearing was convened in response to a disturbing and disappointing report from the GAO that exposed the lack of care provided to people with serious mental illness. In her testimony, SAMHSA director Pamela Hyde, an attorney, essentially admitted that she doesn’t believe serious mental illness exists, but rather that people move in and out of illness and recovery.

I’m not sure what the job qualifications are for someone who heads up a multi-billion dollar organization tasked with coordinating care for people with mental illness. But I’m pretty sure one of them should be actually believing that mental illness exists. What if the head of the Department of Health and Human Services was an antivaxxer whose response to the Disneyland measles outbreak was to tell parents to exercise their free choice and take their kids to measles parties? Would we let that person keep her job? To me, this analogy describes Ms. Hyde’s dangerous position on mental illness, or as she prefers to call it, “behavioral health.”

Make no mistake: we’re in a public health crisis with mental illness, one that is far more serious than the measles outbreak. We need our leaders to acknowledge the scope of this crisis and to take decisive action, now.

That same morning, as I watched the hearing, I received a desperate plea by email. The author has given me permission to share this story with you, though I will not share her name, because this is an ongoing situation. But her story puts a human face on the GAO report and the magnitude of the health crisis that parents of children with mental illness are experiencing.

I hope that Pamela Hyde and all the people who think that mental illness doesn't exist read this desperate parent's plea. I hope Ms. Hyde starts to understand how badly our mental healthcare system has failed children, families, and communities. And then I hope she drinks a smoothie, one of SAMHSA's recommended treatments for behavioral health—and quietly resigns.

A Mother's Story

This is so hard for me. I had hoped and prayed that my daughter’s illness could be handled in private, and I fiercely protected her privacy. I’ve made up all kinds of stories trying to cover up where she is and what she is doing. When something did come out publicly, I put a spin on it because I was worried about how stigma would affect her.

But now her illness has caused her to end up missing for nearly
five days. So now I must tell you what it’s like to live this nightmare every day.

And I want all of you, ESPECIALLY those of you who think you know exactly what you would do if you were me, to SHUT UP AND LISTEN TO ME!

Just shut up NOW! 

Now you may be wondering how we got here. Well, my daughter has been struggling for a long time. While her diagnosis, signs and symptoms as well as the details regarding her disappearance aren’t something  I will share, I will share the following: 

Self-directed treatments. FAIL. 
Forced hospitalizations. FAIL. 
Voluntary hospitalizations. FAIL
Conventional Treatment. Alternative Treatment. FAIL. FAIL.
No meds. Too many meds. Right amount of meds. FAIL FAIL FAIL

I let her go. I hung on. I told her what to do. I backed off. 

I got into her business. I gave her privacy.

I surrounded her with loved ones. I left her alone. 

I attached. I detached.

I encouraged her to get a job. I encouraged her to go on disability.

I went to work to keep myself occupied and give structure to my life, and then I had to quit my job in order to accommodate her illness. 

I spent every dime I had in the bank.  

I researched every illness that could induce such behavior. I took her to specialists.
I was even schooled on boundaries by her and her therapist. I was told that I needed to let HER decide everything. 

Did you know that a person in a state of full-blown psychosis gets to have a say in their treatment?

And did you know that an adult with severe mental illness can exclude everyone, including their caregivers from having access to information?

We were told that the only thing that would work was for her to be admitted to a full time residential facility. However, due to the public facility being booked and our inability to afford the expensive price tag for private care, we had no options except what our insurance would pay. So I confidently looked to our insurance company and trusted that they would pay for her recommended care. 

FAIL. Even though our coverage offers residential treatment, they only approve two to three days at a time. You get the authorization usually at the end of the third day. They normally decline and you have to appeal. And no matter what the doctor recommends, some pencil pushing bureaucrats at the insurance company get to decide whether or not your child is doing better and will approve or deny based on their decision, not the doctor’s. 

Offering residential looks good in the employee handbook, but doesn’t mean much when they can wiggle out of it when they don’t want to pay.

My daughter was doing quite well in her program until they refused to pay after two weeks. 

I contacted dozens of therapeutic communities, farms, and other residential settings from across the country. But the cost of care averaged $10,000 per month. I don’t have that kind of money. 
And all those famous programs you read about, you know, the ones with the slick ads? Try $2,000 per DAY! And they don’t take insurance.

But even if we could afford it, these care facilities won’t take my daughter if she doesn’t want to be there.
And I could NOT make her. I considered conservatorship, but the private facility where she was going would not accept her with it. Like many private facilities, they will only accept a patient who is going there willingly.  

Her so-called "rights" as a patient with mental illness assure her the opportunity to even live homeless if she chooses, no matter how sick she is. Hey, it’s her "choice"!

So last September, with no other options available, I brought her home. 

I hoped and prayed that things were going to continue to get better for her. I watched for signs. Then last week, she started showing signs of decompensation. I had started the process of getting her back to the doctor when it all came crashing down. 

And then she took off for five days. Today she is back safe and in a hospital, but what will happen next is anyone’s guess.

The bottom line is that like many people with severe mental illness, my daughter needs full-time,and if necessary, court ordered residential medical care. You can love your child, but the family isn’t enough when they need constant supervision. And you can allow them certain freedoms, but when they are too ill to make decisions, you need support in forcing them to get care.

I believe full time supervision would have prevented this downturn.

And as much as I believe that Assisted Outpatient Treatment needs to be an option for people with mental illness who are able to remain in their communities, I don’t think in her case that it would work. I was already told that a first request for it would more than likely denied, especially since she had recently agreed to go to therapy and follow protocol. 

My daughter is a highly gifted young woman with a world of opportunities waiting for her, but sadly, thanks to this mental illness, she is now disabled.

For years I have tried to figure out what went wrong. I have analyzed nearly every interaction and I cannot figure it all out. 

And I can sit here all day, with all the other caregivers who live this nightmare daily and blame myself and try to figure out what I could have done differently.

But I can’t figure it out.

I do know that I have loved this girl from the moment of conception, and I cannot fully express to you how bad my heart hurts over this.

But I just can’t save her. I really tried. Our whole family did. 

But nothing works except residential care. 

And I’m hoping that we can access that care for her before it’s too late.

Thursday, February 5, 2015

5 Real Ways to Combat Mental Illness

The brain is the mind.
Photo courtesy of Cabeza Rapada,
(Hint: One of Them Isn't Calling It "Mental Health")

Every morning, I wake up to an inbox with messages like this (identifying details changed):

"I just read your piece titled 'I am Adam Lanza's mother.' It rang true to me in every way. My son is 10 years old and he has been in 12 different schools, four behavioral centers and continues to get worse. He talks openly about how he is going to kill us all. He hides knives in his room, attacks, steals, screams profanity."

Or this: 

"I've been diagnosed with depression, anxiety, panic disorder, PTSD, Intermittent Explosive Disorder, Bipolar, and I'm recovering from drug/alcohol addictions. I have never been able to see a quality therapist or psychologist. One time I found one that I liked and then stopped going because my insurance changed. The mental health care system in this country is appalling."

Or this:

"I have experienced aspects of what you are writing about with a sibling who has bi-polar--extreme depression and suicide attempts. In fact she's been in ICU for the past two weeks, so my other sister and I continually search for answers in how best to care for her."

Or this:
"I never know how to tell people how scared I am. Right now I am well controlled with medication but I am terrified. What happens if my meds stop working and I can't control myself?"

And then, as I'm searching the Internet for real solutions to help my friends, my HuffPost mental health alert sends me this: "5 Real Ways to Combat the Stigma around Mental Health.

Apparently, a bunch of experts got together and came up with some suggestions for ending stigma. The problem is that they're the same suggestions we've been hearing for 20 years now. And the stigma needle, despite all this anti-stigma talk, is not budging.

I'm all for ending stigma, especially the self-stigma that keeps parents from asking for help or consumers from feeling okay about their medical treatment. As an example, I just had a conversation with a friend who has bipolar disorder. She admitted that she felt bad that she had to take medication to manage her condition. 

"But when I don't take my meds, I don't feel like me," she said. "Plus, my life starts to fall apart. I like this me, the 'me' that is in school, working, making a better life for myself. But I feel like I should be able to manage this on my own, without meds."

My jaw dropped. I have hypothyroidism. I have never once felt guilty for taking my daily thyroid medication or thought that I ought to manage my thyroid condition "on my own, without meds." 

You know what might end the stigma of mental illness? Treating it for what it is: illness.

While the experts talk about mental health, here are my suggestions for five real ways to combat mental illness:

1. Make early intervention a top priority. Pediatricians should all be trained to include mental health questions in well child visits. Shocked that a child of 5 might express suicidal thoughts? I know hundreds of families who have had that experience. The earlier we can get children and families help, the more likely they are to manage the illness and lead productive lives. And new care models developed at Yale University suggest that intervention right after first episode psychosis can improve long term outcomes for young people with schizophrenia. 

2. Train more psychiatrists and increase access to care for people with mental illness. Instead of teaching community leaders to look for signs of depression, we should be focused on training a workforce that is competent and capable of delivering evidence-based care to people who need help. The shortage of psychiatrists, especially those who work with children, is a real and growing problem.

3. Stop saying "mental illness," and start saying "illness." I'm not suggesting that we should stop talking about mental health, by the way. But serious mental illness is physical illness. Mental health is important to everyone, and people with any type of chronic health condition are at greater risk of depression . But as long as we keep artificially separating serious mental illness and serious physical illness, stigma will remain, and true parity will never be achieved. People will continue to think that mental illness is a choice or a character flaw.

4. Listen to families and provide them with actual support. Maybe you saw the story about the Virginia mother who is prepared to face child abandonment charges rather than bring her 12-year old son home from jail.  The comments on this story show just how pervasive this problem is. People who aren't living this experience seem to think that there's some place we parents can go to get help for our children. Some of us jokingly refer to this place as "CandyLand." 

5. Enough talk; it's time for action. We are getting really good about talking about mental illness. I have no problem telling you that I was treated for depression. My son, who has bipolar disorder, has no problem telling strangers in the grocery store checkout line that lithium has completely changed his life. It seems like every day, a celebrity or athlete shares his or her struggle with mental illness. And that's a good thing. But what about those whose voices aren't being heard? What about the people in prison, or living on the streets? When will we stop talking and take action to help them? Peer support is a good start, but some of us need more. Assisted Outpatient Treatment is one community services program that has enabled people with serious mental illness to live in their communities and stop the revolving door of incarceration and homelessness. 

I'm tired of hearing stories from suffering families. It's time for the experts to sit down and have a real conversation about mental illness and how we, as a society, can offer them help and hope.

Tuesday, January 27, 2015

The Anarchist Soccer Mom Goes to Washington

I hope Congress can give themselves a facelift and pass mental
health reform legislation that will help children and families!
Lessons in Speaking Up—and Listening

I’m a mom. What that means for me, as it means for so many moms, is that I rarely think of myself first. When I have to choose between hearing the President of the United States speak in my hometown or picking up my kids from school, I pick up my kids. When I’m cooking dinner, I fix their favorite canned tuna and white rice instead of the lamb curry vindaloo and brown rice I would prefer to eat. Rather than spending money on spa treatments for me, I buy soccer camps or ice skating lessons for them.

But this week, I did something all for me. I bought a last minute plane ticket from Boise, Idaho to Washington, D.C. and flew into the outer edges of Winter Storm Juno to attend the presentation of the well-deserved Treatment Advocacy Center E.F. Torrey Award to Representative Tim Murphy (R-PA), a man I and many other families of children with mental illness view as a hero.

Two years ago, in a gut-wrenching response to the Newtown tragedy, I told our family’s painful story on my formerly anonymous blog. My essay was picked up by Boise State University’s The Blue Review and retitled as “I Am Adam Lanza’s Mother” (thanks, @paleomedia). Overnight, I became an accidental advocate for mental illness, speaking up for families and children everywhere who could not find anyone to listen to their stories. Then I wrote a book, The Price of Silence, telling some of those families’ stories, describing the numerous barriers to care that we face, and identifying solutions that already exist in some communities.

Now, it seems that lots of people are talking about mental illness, and that’s a good thing. But I wonder if people are listening.

Every day, there’s another tragedy in my Twitter feed: a father (or mother) tosses a child from a bridge, a mother attempts to kill herchildren, an estranged boyfriend kills a woman and her daughter, a police officer shoots a 17-year old girl. Every day, hundreds of thousands of people with mental illness suffer on the streets while millions more languish in prison. Meanwhile, states slash mental health budgets, and families continue to live onthe brink, as they did 15 years ago.

Today in his acceptance speech, I heard Representative Murphy offer, once again, a vision of hope. He talked about the need for better options, from early intervention to peer support to assisted outpatient treatment that can keep people with serious mental illness in the community and out of prison. As National Institute of Mental Health Director Thomas Insel and American Psychiatric Association President Paul Summergrad looked on, Representative Murphy encouraged research into new treatments that can help people with serious mental illness live productive, happy lives. He talked about ending discriminatory regulations that prevent people with mental illness from seeing a physical doctor and a mental health specialist on the same day and about expanded inpatient treatment options (instead of jail) for those who desperately need them.

I have to admit that one thing made me especially glad: in discussing his proposed new legislation, it seems like Representative Murphy is listening. And that’s important. But has one advocate noted, the voices of people who have serious mental illness are important too.

How do we hear the voices that serious mental illness has silenced? How do we ensure that we do not merely “bring back the asylums,” as one recent provocative JAMA article proposed, but that we create comprehensive services for individuals, families, and communities?

The word “advocate” means to speak up for something you believe in. But sometimes, advocacy also means respectfully listening to people who disagree with you. That’s a lesson our current Congress needs to learn. I hope that the Capitol’s denizens can repair their rifts (as the building itself gets a facelift) during this next session. It has become very easy in this world of fast information to tune out voices that disagree. But as a scholar and as an advocate, I prefer to surround myself with the voices of people who think about these complex problems in different ways. I do not feel threatened by other advocates who see these problems—and their solutions—differently than I do.

But one thing I think we all agree on is this: the current mental health care system is broken. We see the proof in our suicide and incarceration rates. Barriers to mental health care—however you define it—are massive and omnipresent. As one of my opposition-minded friends noted, whatever you think of Representative Murphy’s proposed legislation, at least he got us all talking about the problem. No bill, however well-intentioned, is ever perfect. But I applaud Representative Murphy for rising once again to the challenge of bringing our different voices together in a clarion call for change and hope. Let 2015 be the year we can listen to each other—and by listening, learn to help each other and those among us who suffer most.

P.S. Thanks to a supportive and amazing spouse who got the kids to school, fixed their dinner, and supported me in this once-in-a-lifetime opportunity. Love you, Babe!

Monday, January 19, 2015

5 Reasons I Wish We Would Stop Talking about "Recovery" for Serious Mental Illness

And the word I wish we would use instead

My heart hurts today. My friend Laura Pogliano has lost her 22-year old son Zac, who had paranoid schizophrenia. Both Laura and Zac were tireless and passionate advocates for ending the stigma of mental illness. Their story was featured in USA Today's "Cost of Not Caring" series, where Laura described herself as a "fortunate" mother--fortunate because despite personal bankruptcy, she had been able to obtain treatment that seemed to be working for her son. This tragic turn reminds all of us mothers just how fragile life is for our children who have serious mental illness. As a parent of a child with bipolar disorder, my worst nightmare is what happened to Laura and her son.

There's a popular quote floating around mental health advocacy circles: "Mental illness is not a choice. But recovery is." I know people will disagree with me, but today, I'm tired of that sentiment, and I wish we would retire the word "recovery." When local and national mental health policy is shaped by high-functioning consumers who have been able to manage their illnesses rather than by the sickest patients and their families, it's the equivalent of only allowing stage 1 cancer survivors to drive the narrative and take most of the funds. While their courage is admirable and their struggles are genuine, too often, we lose sight of those who are suffering the most. They become invisible to us, marginalized on the streets or in prison. Or they die young, like Zac.

I wish we would stop talking about recovery and replace it with a more useful, less stigmatizing word: hope.

Here are five reasons I wish we would stop using the word "recovery" for serious mental illness. 

  1. Not everyone recovers. The word "recovery" has become central to mental healthcare, from the top down. In fact, the Substance Abuse and Mental Health Services Administration's stated mission is that "People recover." With serious mental illness, that's not true. People recover from head colds. They recover from chicken pox. They recover from situational depression. They even recover from trauma. But some diseases are lifelong. Like diabetes, or Parkinson's disease, or multiple sclerosis, serious mental illness is a lifelong, chronic health condition.
  2. Recovery and its partner phrase, behavioral health, imply that mental illness is a choice. Mental illness is not a choice or a character flaw. The focus on "behavioral health" unintentionally stigmatizes the very people that SAMHSA is meant to help: those with serious mental illness.
  3. The word "recovery" suggests that people need to return to a "normal" state, rather than embrace their differences. What does a person with bipolar disorder or autism need to "recover" from? When people realize they are not their diagnoses, they can start to find things that actually work to help them live successful and productive lives. That's hope, not recovery.
  4. The concept of recovery increases stigma, both within and outside the mental health community. Again, if people recover, why aren't you recovering? It must be a choice you are making, or something you're doing wrong. Some people tell you the medications you take are preventing you from recovery. Others tell you that your choice to stop medication is preventing you from recovery. Who is right? Hope is a universal concept that embraces a wide range of possibilities. Recovery seems dependent on a prescribed set of treatments that may not work for everyone.
  5. Recovery is an unrealistic standard for any chronic illness, including mental illness. We would never apply the blanket expectation of recovery to any other chronic illness or disability. With cancer and autoimmune disorders, we use the term "remission" to describe a life-threatening systemic illness that with luck and treatment has been stopped in its tracks. With other chronic illnesses like diabetes, we talk about managing the illness. But with mental illness, we expect people to "choose" recovery, even when they are experiencing psychosis, or when their disease steals their ability to make rational choices.

Behavioral health is an important concept for everyone. We should all focus on our behavioral health: on diet, exercise, mindfulness, good sleep habits. But behavioral health is not mental illness. Mental illness is physical illness. For people with serious mental illness, behavioral health alone will not "fix" or "cure" the chronic condition, and for us to expect otherwise is unrealistic and cruel. We need to focus on effective treatments, not inaccurate judgments about what we "believe" or "feel" mental illness is. It's a very real health challenge, with real and sometimes devastating consequences for those who live with it and their families. 

Let's keep talking about behavioral health for everyone. But let's stop talking about recovery for serious mental illness and start celebrating people whose brain disorders cause them to live with health challenges comparable to those experienced by cancer patients. The word we need, in the face of so much loss, is hope. Mental illness is not a choice. But hope is. Even in the face of tragedy, today I choose hope.