A Conversation With Former First Lady Rosalynn Carter About Stigma, Discrimination, and Brain Disorders


Mrs. Carter
Credit: The Carter Center/P. Rohe

Former First Lady Rosalynn Carter has been an unrelenting crusader for people suffering from mental illness (which I refer to here as brain disorders). For more than 40 years she’s been working on promoting awareness of the issues, public policy, making health care insurance coverage for these brain disorders comparable to traditional health care coverage, and reducing stigma and discrimination against the people who suffer from these brain conditions.

I spoke with Rosalynn Carter about stigma and treatments.

Rosalynn Carter emphasized that “mental illness” is “an illness like any other illness.” It can be diagnosed and treated, and almost everyone suffering from one of these disorders can be helped. The problem is access to help and the stigma associated with obtaining healthcare.

Much of the stigma related to these brain disorders was created because of our nation’s past history of institutionalizing people with these illnesses. As a result, Rosalynn Carter’s efforts have focused on educating people on these disorders in order to reduce the stigma associated with our nation’s health practitioners having gone to such extremes as removing people from society simply because their symptoms were misunderstood.

Stigma in these modern times has not changed much. In fact, Rosalynn Carter said it may even be increasing. It is difficult for her to understand why the stigma still exists today when at least one in four adults in the United States is diagnosed with a mental health condition, she said.

Through The Carter Center, Rosalynn Carter has focused on strategies to reduce stigma and discrimination.

As with any form of prejudice, the answer begins with education.

Rosalynn Carter stressed the need for internists to be trained to recognize symptoms, make the diagnosis, treat the condition, and know the resources in community for referral and support. However, she found, after enormous efforts, that medical schools were resistant to incorporating this type of coursework into their curriculums, and there is no umbrella organization that can make it a requirement.

The Carter Center for Mental Health created its Primary Care Initiative to tackle this problem. It is an especially important initiative, because many primary care physicians are not well trained on diagnosing or treating these brain disorders. Indeed, according to the Carter Center, depression is too often misdiagnosed and only one third of patients treated for depression in the primary care setting have any type of meaningful improvement in their condition. (This may be due to ineffective treatments. See JAMA article.) At the root of this problem is stigma among medical practitioners, despite the improved understanding of “mental illnesses” being biological brain disorders no different from any other brain disorders.

As a result, people who suffer from these brain conditions continue to feel the stigma and are embarrassed to seek professional help. Rosalynn Carter would like to see medical centers expand into one-stop shops, where various practitioners would practice so that consumers don’t feel stigmatized getting treatment, and, of course, she wants to destigmatize brain disorders. She added that there is a need for more community centers at which to get treatment. (Georgia, she noted, has a Medicaid-paid peer pairing program — those treated helping those getting treatment — that’s successful.)

The media is another area where Rosalynn Carter focuses, because the media has contributed to stigmatization of these brain conditions. Too often journalists and reporters refer to the symptoms of these brain disorders as “bizarre” and other derogatory terms. To combat this problem, Rosalynn Carter created The Rosalynn Carter Fellowships For Mental Health Journalism to educate journalists.

On an individual level, stigma can be reduced through interpersonal experiences, Rosalynn Carter said. She would like to see neighbors getting to know neighbors and co-workers getting to know co-workers with these disorders. After seeing that they’re okay and that they’re raising families, she hopes the stigma will fade. She also believes it helps when celebrities reveal that they have been diagnosed (and treated for) a brain disorder (as has Emmy-award winning Patty Duke. Look for my interview with her in my next blog posting.)

Rosalynn Carter recently led The Rosalynn Carter Symposium on Mental Health Policy, which focused on building services and support for children at risk for developing brain disorders related to psychological trauma.

The Politics, Stigma and Experience of Brain Disorders: A Blog Series

Image: Victor Habbick / FreeDigitalPhotos.net

The holiday season is a good time to talk about brain disorders. The kind I’m talking about are more commonly referred to as mental illness, but I think that term detracts from the fact that depression, anxiety disorders, bipolar disorder, schizophrenia, dementia and other such conditions arise in the brain. I think it allows us to consider them less important than “real” brain disorders, such as tumors and strokes.

Mental illnesses are too often tossed aside as conditions that take place in the mind. (Last I knew, the mind was in the brain, and the brain is a pretty important organ — I think you’ll agree.) I see people wearing pink ribbons for breast cancer and other colors for other diseases and rallying around them to raise money for research to eradicate these awful diseases. (And more power to these people.) But save for autism, I see little energy going into standing up for people suffering from stigmatized brain disorders that affect thoughts and emotions and that leave their hosts losing out to fulfilling their potential.

If it takes selfishness to motivate people to rally around a cause, then consider all that we miss out on — discoveries and advances in various fields that are left undone because these sufferers may not be able to function at the high rate they otherwise would. You can also think about your wallet, because the cost in lost productivity and therapeutic (and only weakly effective) measures ultimately cost us in terms of taxes or reduced profits. And if you think you are immune from developing such a condition, think again. In one study, nearly half (43 percent) of older Americans will have Alzheimer’s disease by age 85 — and that’s just one form of dementia.

Having a brain disorder leaves you vulnerable at any age, but having one when you’re a child or a senior citizen leaves you especially vulnerable.

It is true that there is research going on, but too often I see the same research being done again and again using antidepressants. However, a landmark paper published in JAMA Jan. 6, 2010, that reviewed nearly 30 years of studies found that antidepressants are no more effective than placebos (sugar pills) for those people with mild to moderate depression. (This is not to say come off your medication if you are taking it, but that research needs to be done outside of antidepressants.) Further, many of the psychotropic medications — drugs used to treat so-called mental health disorders — have serious side effects, including substantial weight gain, metabolic syndrome and tardive dyskinesia. Money is a factor, understandably. So it surprises me that funding is seemingly not being given to larger studies that would validate the findings of innovative small studies that have shown real possibilities for using inexpensive treatments, such as Tylenol to treat emotional pain (emotional pain is pain, after all — think heartbreak) and Vitamin B8 to treat obsessive compulsive disorder (OCD).

I chose the holidays to address these particular types of brain disorders, because many people feel depressed at this time of year. I’m hoping that feeling will give way to empathy long after your depression lifts with the promise of a new year.

For this series, I have interviewed former First Lady Rosalynn Carter, who has been an unrelenting crusader for people suffering from brain disorders, Emmy-award winning actress Patty Duke, who has bipolar disorder and who speaks about bipolar around the country, and former Congressman Patrick Kennedy, who has been a relentless fighter for the rights of people with brain disorders to have their diagnoses be covered by insurance like any other medical disorder and whose focus has now become understanding the etiology of brain disorders and changing the way we perceive brain disorders by looking at them through the eyes of our soldiers.

I’m placing links to their nonprofits below. I want to point out, though, that neither Mrs. Carter or her organization or Mr. Kennedy asked me to link to their websites, but I suspect they’d be pleased if you’d support their efforts.

Carter Center Mental Health Program
The Next Frontier

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