The Privilege of Eating Disorder Recovery.

The Privilege of Eating Disorder Recovery.

I want to say something right off the bat: my recovery was not easy. I will never pretend that any part of living with and overcoming mental illness is effortless. My journey out of the heart of an eating disorder began many years ago and continues, albeit in a different form, to this day. My disorder could never have been overcome were it not for the conscious effort and work I put into my own healing: the therapy, the yoga, the reflection, the writing, the education, the tedious process of rewiring my brain and its habits day in and day out for years. All of that was me, my work, my heart and soul.

But it would be a disservice to everyone to try and pretend that my transformation happened in the absence of countless privileges that many are not so lucky to have.

My recovery process began with a hospitalization. On a sunny spring day in May of 2013, I was unexpectedly shipped off to Lucille Packard Children's Hospital in Palo Alto, California. Quite luckily (although I didn't view it as such at the time), my family lived only a few hours away from one of the top eating disorder treatment facilities in the world. The girls I shared the beginnings of my treatment with had traveled from all over the state and country to work with Stanford's medical team there, desperate for some kind of support in their struggle. Many of these girls and their families had no clue how they were going to pay for not only the treatment itself, but for the additional costs that come alongside it: the travel, the room and board for the families who were desperate to be by their loved one's side, the time off of work or school to be there.

At the time I was oblivious to this. I hated the hospital. I hated being scrutinized and mistrusted by the doctors and nurses. I hated being confined to a bed or wheelchair. I hated the humiliation of peeing into a plastic cup on the floor of the bathroom, being monitored down to the excrement of my ailing body. I hated the dull, grey walls and the piles of blandly terrifying food placed in front of me every two hours. I hated it all. I could scrape together not even an ounce of gratitude for anything about my time there.

The average cost of inpatient eating disorder treatment is $30,000 dollars a month. The median household income in the US is $53,719.

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It's no surprise, then, that only 1 in 10 eating disorder patients have access to treatment.

While I struggled to find gratitude for my hospitalization, countless families would have given anything to switch places with me. My family didn't think twice about moving forward with my treatment: they were in a position where finances likely didn't even cross their mind when thinking about getting me help. Both my parents had stable jobs. Neither of my parents were worried about taking time off to take me there. But not everyone has that kind of security, not everyone has the luxury of avoiding thoughts such as, "Can we afford that?" when a doctor tells you that your child is in need of such an intervention.

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I can't even imagine coping with financial stress during a time already filled with turmoil. Anorexia nervosa has the highest mortality rate of all mental illnesses, how are you supposed to maintain your sanity knowing that someone you love is suffering from such a disease and your financial situation could be the limitation between their recovery or continued struggle? What a deeply unfair situation to be placed in for everyone involved.

I have yet to mention, of course, the key element of insurance.

When I was hospitalized, I was only able to use my insurance because my doctor admitted me on the grounds of physical symptoms of  my disease. I was diagnosed with dehydration, malnourishment, and a weakened heart: that's what my insurance was told. Mental illness was not even mentioned, and had it been, the cost of my treatment would have been insurmountable compared to what we paid in actuality.

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. In 2016, the 21st Century Cures Act was signed into law by President Barack Obama. This was remarkable due to the fact that it was the very first legislation to directly address eating disorders and prevent insurance companies from denying treatment to sufferers of mental illness.

And yet, many Americans do not have or can afford health insurance. About 44 million Americans have no health insurance, and an additional 38 million have inadequate health insurance for their needs. When patients have inadequate or non-existent coverage, the likelihood of their recovery from an eating disorder plummets. For many sufferers, intensive medical treatment or inpatient supervision and guidance is absolutely key to success. To recover from an eating disorder means to literally interrupt compulsive, dangerous behavior and rewire the brain's habits into something healthier. All of this, of course, must be done while trying to improve the body's physical health as well as the mental health.

96.7% of eating disorder specialists surveyed "believe their patients with anorexia nervosa are put in life threatening situations” due to treatments being cut short when insurance coverage is denied.

If patients fear they cannot afford treatment, they will continue to be discouraged from taking on the already-difficult task of recovery. A study analyzing the cost benefits of eating disorder treatment found that the lower the BMI of a patient, the more expensive treatment is, likely due to the intensity and length of the necessary treatment for such a physically severe case. That means, of course, that those who need help the most are the least likely to be able to afford it.

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Without treatment, up to 20% of sufferers die. Only 10% of eating disorder patients get recovery. It's a simple math problem with a simple solution: early and effective treatment is the key to winning the game of recovery, and losing means death.

I'm remarkably lucky. Hard working towards my recovery? Sure. But it's against all odds that I was in a position to receive and afford treatment. I am an abnormal case in that when things started going downhill I had a financially secure family ready to get me the help I needed as soon as possible. I had access to therapy, doctors, nutritionists, yoga classes. I had so many opportunities that gave me the freedom and peace of mind to be able to fully focus on healing myself. Most people don't have that.

What if I had been born into a different life? What if I'd never had the intervention of the hospital? What if I'd never been taken to a therapist, weekly, for years? What if I'd never been able to afford a membership at a yoga studio?

In all likelihood I'd be dead, or if I was lucky, jumping from one relapse to another.

I believe recovery is possible for every person. But I don't believe it's always accessible to those who need it most.

It's no secret that the American healthcare system needs an overhaul and some serious changes to impact this issue (and many others), but that won't happen overnight. As we uplift ourselves through our personal recoveries, it’s important to keep in mind those who also need uplifting. The disparity of mental health treatment in this country needs changing, and it needs changing fast. It pains me to think of the young men and women out there who feel like recovery isn’t possible for them due to their circumstances or financial means. Keep sharing your stories. Keep speaking out about mental health. Keep normalizing mental health treatment. As we destigmatize our stories, we move towards a world of equal opportunity recovery for everyone.

Free resources for those seeking help:

NEDA Hotline and Online Chat

Lotus Center Free Support Groups

Eating Disorder HOPE Text Chat 

Food Psych Podcast

Read my past posts on eating disorders here.