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Former first lady crusades for better mental-health care

(Courtesy of Rosalynn Carter)

At age 82, former First Lady Rosalynn Carter could be taking life easy. Instead, she's still hard at work on the campaign of her lifetime: She wants to see people with mental illnesses treated better, in both the medical and general sense of the word "treated."

Carter is promoting her new book "Within Our Reach: Ending the Mental Health Crisis," in which she (with co-writers Susan Golant and Kathryn Cade) documents the obstacles that people with mental illness face in the United States and offers ideas about how to remove those barriers.

Nearly 60 million U.S. adults suffer from mental illness, according to the book. On top of the obvious burden that mental illness places on a person and his or her family, Carter argues that stigma is their biggest challenge.

"Stigma is the most damaging factor in the life of anyone who has a mental illness," Carter writes. "It humiliates and embarrasses; it is painful; it generates stereotypes, fear, and rejection; it leads to terrible discrimination. Perhaps the greatest tragedy is that stigma keeps people from seeking help for fear of being labeled 'mentally ill.'" Which is a shame, Carter told me on the phone, because "today, if detected early, we have interventions that work and can mitigate the consequences" of mental illness.

But stigma is far from the only concern mentally ill people face. They are under-served by the health-care system and encounter insurance roadblocks; they're also more likely to die prematurely than others, Carter writes. Such issues are amplified when mental illness strikes members of cultural minorities, elderly people and children. It's a big mess.

So what to do about this? Carter suggests the following:

  • Volunteer: "There are always people in the community who advocate for the mentally ill," Carter says. "Find a [treatment] center, work [there] and become acquainted with people with mental illness."

  • Call Congress: "Look up your Congresspeople and local people and tell them how important it is to fund these programs I've written about" in her book. "We always need money for mental health."
  • Watch your kids: "Fifty percent of mental illness is detected by age 14," Carter says. Parents should be on the lookout from the time their children are babies for anything unusual about the way they interact with others or any delays in reaching developmental milestones, she said. Any issues should be brought to a doctor's attention.
  • Encourage communication: If you know someone with mental illness, encourage them to talk about it. "It's so good when they talk about it, go public. They're going to find there are so many people in the same position," she says.
  • Read up: If nothing else, Carter suggests, people "can read my book and spread the word."

Okay, I'll do my part by encouraging communication. Do you or a loved one suffer from mental illness? Would you share your story or insights, please, in the Comments section?

By Jennifer LaRue Huget  |  May 10, 2010; 7:00 AM ET
Categories:  Health Policy , Mental Health , Psychology  
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"There are always people in the community who advocate for the mentally ill,"

Yes, and there were always people who advocated "the" Blacks, and "the" Jews. We generally avoid them today.

"Carter argues that stigma is their biggest challenge."

I doubt that Rosa Parks would have concurred that that was her biggest challenge, nor is it mine. And it was amazing how, following her succesful pursuit of rights, how quickly skin did not determine seating.

Harold A. Maio

Posted by: khmaio | May 10, 2010 11:06 AM | Report abuse

This issue is SO important to all of us in this country, and yet so overlooked. Funding for research and care should be as much of a priority as cancer and other diseases.

Posted by: shawnmsim | May 10, 2010 12:28 PM | Report abuse

My mother moved in with me and suffered from severe depression to the point she couldn't find work. I tried everything I could - which was practically nothing. Unless she was a danger to herself or others I couldn't force her to get help and she claimed she was "fine." She wasn't. Families need a few more rights to force their loved ones to get needed help. Mentally ill people don't recognize they are ill. Their family members do. At the very least, family should be able to force a psych eval and 3 day hospital stay for evaluation. And don't even get me started on what insurance, Medicare etc. don't cover when it comes to mental health . . .

Posted by: tricia_will | May 10, 2010 12:33 PM | Report abuse

I have depression, and have had it for the last 6 or 7 years. I'm a professor at a local university, working primarily with graduate students. Unlike resident undergrads, they don't have a resident assistant (RA) or similar symptom- and resource-cognizant staff members keeping an eye on them.

Every term, in every class, I make a public service announcement about depression and available resources. I share with my classes the painful and startling fact (from a Berkeley or Stanford or somewhere around there research report) that 85% of graduate students will experience at least one episode of clinical depression during their graduate careers. (This includes professional-degree students as well as doctoral students.) I also tell them that campus mental health staff estimate that of those 85%, fewer than a third will seek treatment even though well over half are experiencing sufficient disruption in their lives to need it. I then explain, very matter-of-fact-ly, that I am part of that 85%, and that I am happy to answer any questions they have or to direct anyone to campus resources, no questions asked. And every term, at least one or two students come to me feeling out of control, and we walk over to the campus counseling center together.

Every single term, at least a couple express surprise at my openness about it, and even more confide in me that "they've got it too." We usually swap medication side effect stories - my docs have been tweaking my meds this last year with some rather crazy side effects, so most of them have seen it.

In short: Depression isn't something that happens to "them"; it's something that happens to *us.* Know the symptoms, know the resources, know yourself and your friends. Neither seeking nor suggesting help should have any kind of stigma attached. It's the greatest possible way to show that you care.

Posted by: leanne_p_2 | May 10, 2010 1:24 PM | Report abuse

I recall a candidate for the Vice Presidency was forced to drop out because it was disclosed he had been treated for depression. Now depression is so common it's not thought of as an actual mental illness. I've been on antidepressant meds since 1993 -- 3 different meds -- and two of my siblings are also on antidepressants. It is an ordeal just getting out of bed and putting one foot in front of the other to get through the day but as long as we aren't a danger to ourselves or others, we're OK. The dangerous mental illnesses like schizophrenia could use more research.

Posted by: Baltimore11 | May 10, 2010 2:13 PM | Report abuse

What a wonderful idea, leanne_p_2, to make a public service announcement to your grad students! I hope that idea spreads.

Posted by: SilverSpringer1 | May 10, 2010 5:08 PM | Report abuse

The biggest challenge for those of us with severely mentally ill family members is that the mental health system and government support system is set up in the most likely way to fail mentally ill people:
- People with severe bipolar disorder or schizophrenia are not good at keeping appointments set up well in advance, but that's the way all governmental benefits work, as well as psychiatrists and clinics. Today she might have been willing to visit the Social Security office, but the offered appointment is in ten days, by which time she might be sure that "they" are out to get her, and she must hide.
- Despite showing bizarre behavior, if a person is at times lucid, the courts will not appoint a family member as conservator. Thus, the mentally ill person -- who may, in a maniac phase spend every dollar they have on art supplies for a big project -- then has no money for food or medication. This leads to even more problems. How about trying to go before a judge to get a conservatorship when the person won't show up?
- Social Services will not step in unless the person is clearly an imminent danger to themselves. Living in a home stacked to the ceiling with "stuff", no food, no medicine -- from Social Service's perspective, this isn't a problem, and until the person is homeless and wandering the streets they won't intervene.
- People picked up and put in the hospital on a three day hold -- in part because they don't have (or can't afford) their medication, are stabilized, then released without any supply of medication, and the cycle repeats days later. What did they expect?

Our family spent thousands of hours, and tens of thousands of dollars trying to help a sibling with severe mental illness including deep paranoia. It was fruitless. Many of the very laws intended to protect the mentally ill (privacy statutes, involuntary commitment laws, requirements to initiate a conservatorship) in the end serve to kill those with mental illness.

Posted by: bk0512 | May 10, 2010 5:33 PM | Report abuse

I've been fighting an anxiety disorder since summer 2005, and I'm one of the lucky ones. I have insurance that covers mental health and wellness, and was able to see a mental health professional reasonably quickly. I found that the highest barrier to treatment for me was the intake nurse, who would not let me speak to a psychiatrist until I "admitted" my problem was an eating disorder. Just because I'm a female young adult who is throwing up does not mean that my problem is an eating disorder. Please, the stereotyping outside of the mental health industry is bad enough, do not let it into mental health treatment! Luckily for me, the psychiatrist quickly recognized that the tentative diagnosis written on my records was incorrect, and started me on a successful treatment regimen.

Also, changing the terminology around mental health treatment would help a great deal. It's intimidating having to talk to an "intake" nurse even for outpatient treatment for anxiety or depression, and the current vocabulary implies that institutionalization is just around the corner.

Posted by: theGelf | May 10, 2010 5:34 PM | Report abuse

I've had panic disorder with some social anxiety for, oh, over 10 years now. I also developed debilitating postpartum panic after both of my children were born.

At one point I could barely set foot out of my house and even the slightest criticism at work would send me into a spiral of fear that I was worthless and my life was over. I very seriously considered suicide on a few occasions. (I have no idea if my friends and family realize that, so if they're reading, um, yeah.)

I'm incredibly lucky that I've mostly had excellent health insurance that covered some portion of mental health care and I could afford to cover the rest.

Over the years, thanks to psychotherapy and medication, I'm so much better. I still have fears and anxieties, but I can separate the rational ones from the irrational and I have coping mechanisms for both kind.

People with anxiety and depression can't just get over it. We need help and we need time. And sometimes we need drugs.

Posted by: marag | May 10, 2010 6:48 PM | Report abuse

the country is moving to re-deinstitutionalize persons with mental illness by now dismantling state psychiatric emergency rooms and acute care beds. When state hospitals were closed in the 1970's and 80's, community services were to be set up to provide safety nets for persons with mental illness needing services. this happened haphazardly. Now even these services are being cut to save money. Here is the deal. 80% of persons with schizophrenia and bipolar ilness can recover their lives but it is often touch and go. Imagine yourself in a delerium from a high fever where you have hallucinations , disturbing thoughts, the worst nightmares ever. This is what schizophrenia is like, only you are awake. When acute mental illness begins, immediate intervention is needed to stabilize symptoms to set the stage upon which further recovery can be built. These illnesses are very disruptive. Fragility is the norm for far longer than 5 to 10 days. If we are going to medicate persons and quickly discharge them without the safety nets of housing,entitlements, outpt treatment resource,hope, encouragement and connection to a caring community, we have provided partial but inadequate care and shouldn't be surprised by the revolving door. Come on AMERICA, lets do what is moral and right. Lets provide the safety nets to help our sons and daughters,brothers and sisters with mental illness. It will save lives and money in the long run. Mary Duffield St Louis, Mo

Posted by: nurse5 | May 11, 2010 8:11 PM | Report abuse

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