The First Steps to Removing the Stigma From Mental Illness

Congress recently passed the first legislation to recognize eating disorders. The 21st Century Cures Act, which prevents insurance companies from denying support to sufferers of mental illness, is a huge leap in the movement to de-stigmatize mental illness and offer equal opportunity treatment to patients, but it is only the beginning.

When I was a freshman in high school, I was admitted to an inpatient hospital treatment program at Lucille Packard Children’s Hospital Stanford. While I believe that the treatment of eating disorders in hospital environments requires a re-evaluation and improved support systems for empowering patients to take a more active role in their recovery (a topic I plan to eventually delve into in greater detail on this blog), I do look to my admittance into the hospital as a turning point in my recovery. It forced me to acknowledge the depths my disorder had dragged me to, and it gave me a safe and monitored environment to stabilize my physical health so that I could work on healing my mind as well as my  body.

However, I was only able to use my insurance to cover this treatment because my doctor admitted me on the grounds of physical symptoms of dehydration, malnourishment, and a weakened heart. Mental illness was not even mentioned, and had it been, my insurance would have likely refused to cover the stay. Although in 2008 Congress passed The Mental Health Parity and Addiction Equity Act, which sought to equalize the coverage for physical and mental healthcare, it failed to specifically recognize eating disorders as a legitimate mental illness, allowing insurance companies to deny coverage to those who seek help.

Comprehensive eating disorder treatment is remarkably expensive. A residential program- where patients live in a care unit or facility under 24/7 watch and care- can cost 30,000 dollars a month, with most patients remaining in the program for at least two to three months. Even after release from an inpatient program, care is still required for months, if not years, to support the ongoing recovery process. Because there is no “cure” for eating disorders, much treatment is comprised of trial-and-error efforts to find what will be most effective for the individual, resulting in often years of expensive and extensive work with professionals who do not come with a small price tag.

And this is not a struggle for just a small population: the National Eating Disorders Association reports that 20 million women and 10 million men will suffer from an eating disorder at some point their lifetime. And while many associate eating disorders with a simple vain attempt at looking “good,” the results of the disorder are very real and very devastating. They include loss of bone density, severe dehydration that can lead to kidney failure, abnormally low blood pressure and heart rate, and a physical shrinking of vital organs in an attempt to conserve energy. Knowing this, it’s no surprise that the eating disorder anorexia nervosa has the highest mortality rate of all mental illnesses (Arcelus, J., Mitchell, A. J., Wales, J., & Nielsen, S. (2011). Mortality rates in patients with Anorexia Nervosa and other eating disorders. Archives of General Psychiatry, 68(7), 724-731.).

Perhaps the scariest fact I can provide you with is that the rates of eating disorders is not declining. In fact, they’ve been in an upward trend since 1950. Clearly, we are not successful in our attempts to reduce the effects of a deadly disease affecting countless members of our communities. Not only do we need to revamp the way we are treating individuals, we need to increase the ability of individuals to even access the treatments we already have. Countless men and women are suffering because they simply cannot afford to pay out of pocket for expensive professional help that often comes with hidden costs such as travel, accommodations for family supporting the patient, and time taken off of work or school.

Had my doctor not been aware of the struggle to have mental illnesses properly covered by health care, I would have had to pay for my nearly three week stay in a hospital without a penny from my insurance. While I don’t know how much my specific stay would have cost, a study analyzing the average cost of hospitalized eating disorder treatment priced a normal hospital stay at over 31,000 dollars. The most telling result of the study, however, is that the lower the BMI (or the more physically severe the manifestation of the mental illness and the higher the risk of mortality), the more expensive treatment is. That means those who need help the most are the most likely to be unable to afford it without the support of comprehensive health care.

And this ultimately means more lives lost to a disease that is simply “too expensive” to treat.

While the 21st Century Cures Act is a remarkable first step in the efforts to remove stigma from mental illness and offer access to treatment for those who are suffering it is simply that: a first step. Congress can mandate that insurance companies change their perspectives on eating disorders and mental illness as a whole, but it cannot force society to do the same. The fact is, until you are forced to confront mental illness in your own life or that of a loved one, it is impossible to fully comprehend. And for many, this lack of understanding leads to a toxic stigmatization that scares sufferers away from seeking the help they need.

When I was diagnosed, I fully believed I was not suffering from an eating disorder. “Eating disorders”, as I’d seen portrayed in media and as I’d heard them discussed in the people around me, was just another name for silly, vain girls who wanted to lose weight. Never had I heard it discussed as an illness. Never had I heard it associated with depression, anxiety, or OCD (as it commonly is), just vanity. Never had I heard that there was help out there. And never had I ever learned how to identify the disordered habits that I was exhibiting in my life.

If it weren’t for my parents seeking out professional help that we were lucky to see money as no hindrance to, I may have never found my path to recovery, or even recognized that I was suffering from an illness at all. And even after I was diagnosed I still faced the effects of mental illness stigmatization. I lied about why I was hospitalized for fear of judgement and being associated with those “silly, vain girls.” I struggled to talk to my therapist because I feared being judged for the actions and habits I was struggling to bring back into my control. I blamed myself for the effects of an illness that swept into my life and left devastation in its wake- something I often believe wouldn’t have happened, or at least to a lesser extent, had I been educated on the legitimacy of mental illness as an ailment and not just a “messed up mind.”

I recently gave a talk to a middle school about this topic, and was reminded of the urgency of removing this persistent stigma on something that plagues vast swaths of our population with no regard for your age, race, class, or gender. Mental illness affects the lives of nearly everyone, whether you become a consumer of mental healthcare for yourself or for a loved one. And despite this, my talk was the first bit of education on the topic for nearly all of the students I spoke with. They didn’t know what different forms of mental illness were, and they didn’t know how to identify it in themselves or those around them. They were confused by things they’d seen or read in popular media that made mental illness out to be a passing trend, attention-seeking, or not even real. If we don’t educate the youth on the existence and legitimacy of mental illness, how do we expect effective treatments to increase and rates of affliction to go down?

Earlier this month, I was heartbroken by the story of a young woman named Brandy Vela, who at only 18 years old shot herself in front of her family because of relentless bullying  that lead to a depression so severe she took her own life. An unfortunately, Vela’s story is only one of countless heartbreaking stories that take place every day. Over 800,000 people die because of suicide every year- and it is the second leading cause of death amongst 15-18-year-olds. But what makes these stories so heartbreaking is how preventable they could be with early intervention and identification of signs of depression and suicidal ideation. The unfortunate fact is that oftentimes, suicide is a shock to loved ones and communities. Many never see it coming.

The World Health Organization identifies mental health stigma as a leading cause in suicides around the world: “The prevention of suicide has not been adequately addressed due to a lack of awareness of suicide as a major public health problem and the taboo in many societies to openly discuss it.” 

Mental illness, for being so incredibly prevalent, is swept under the rug and delegitimized so often it is significantly contributing to death rates, and it appears to only be getting worse. So many sufferers are scared into silence for fear of being told nothing is wrong with them, that they’re just being ridiculous or attention-seeking, or for the simple fact that they cannot afford the care that they need. How many lives could be saved if we could only make these illnesses as common to talk about and seek help for as the common flu or cold?

But there is hope.

The fact that you’re reading this blog- a blog born out of a journey out of mental illness- is a sign that you’re open to learning more. Maybe it’s a sign that you’ve suffered yourself. More than that, it’s a sign that you’re seeking change, too. And you can take another step towards removing the stigma from eating disorders and all other mental illnesses simply by talking about it. By talking about how it’s affected your life or the lives of those you love. By talking about the injustices that the mentally ill face every day. By standing up for those who are suffering and encouraging those who need it to seek help.

You can share this article, or you could write a Facebook status, or you could talk to your family about what you’ve learned, or you could donate to a mental illness advocacy group, or you could even seek help for yourself. The amount of change you can generate by these simple actions is immeasurable, and all of our actions combined could create change on an unimaginable scale.

If you care to donate to a documentary that seeks to remove the stigma from mental health and provide hope to those seeking recovery, please consider looking at the campaign page  for the “I Am Maris” Documentary. While this film focuses on my personal journey with mental illness, it truly serves as a microcosmic look into the journey countless others are on around this world.

It’s up to us to change the way we talk about, understand, and treat mental illness. This is an epidemic plaguing our global community, and it’s stealing the lives of so many. Through our words and actions, we can remove the grip mental illness has on us, and we can save lives.

We all have work to do.

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