When I met Jennie, I was a freshman in high school, and she was a senior. We got to know each other at a religious retreat, and it was the first time I heard her speak openly about her disease. At seventeen, Jennie had been in inpatient treatment for her anorexia twice. She stood at five feet five inches, and weighed in somewhere around 95 pounds. In the five years that I’ve known her, Jennie has gone back to inpatient more than a dozen times. We live in Rhode Island, where inpatient and residential treatment for eating disorders in nonexistent. As a result, Jennie had to seek help outside of her state, something that is a challenge to pay for through most insurance providers. She has lived in Massachusetts, New York, Pennsylvania, Oklahoma, Utah, and countless other places. There are a lot of reasons Jennie is sick. She has been sick as long as I’ve known her. I’ve watched her go in and out of treatment with the frequency most people her age have boyfriends or hobbies. I’ve seen this disease take the light out of a brilliant young woman. And by far, one of the hardest parts has been seeing her be kicked out of each and every one of these programs before she was ready because her insurance stopped covering it.
The worst was in winter of 2013. Jennie left home in November to go to a center in Tulsa, Oklahoma, where she would live for over six months. While there, she cycled through inpatient and residential treatment. Spent time hooked up to a feeding tube, restricted to a wheelchair. She was there for Christmas, for her birthday. Her family was already struggling to pay the mass of her medical bills, and couldn’t afford to visit at all. She worked as hard as she could. She gave it everything she had. After months and months of grueling work, Jennie finally began to rebuild her life. She had graduated from the intensity of inpatient and residential and finally been able to transition into intensive outpatient treatment, which is not a small thing for her. After a couple of weeks, she stumbled, relapsed, and ended up back in inpatient. It was around that point that her family received a call from their insurance company. Her time was up. She flew back to Rhode Island sick, defeated, and utterly ashamed of herself. She never asked for this monster to take up residence in her head, and she blames herself every day for not being able to defeat it.
Treatment for eating disorders, as for everything else, is a long and exhausting process. And when that process is cut short over and over again, it is easy to lose faith. Every time I get the call that Jennie is leaving for a new program, she is so optimistic, so hopeful that this will be the one. She wants her life back. Agreeing to accept help is brave. It is terrifying for her, and every time she does it she starts off so hopeful. And then she gets halfway through, two thirds if she’s lucky, and her insurance runs out. She can’t afford this treatment on her own, no one can. So when her insurance can no longer keep her there, she has no choice but to return home.
Jennie’s disorder surfaced when she was ten years old. She’s 22 now, and has been sick for twelve years. The truth is Jennie isn’t just “sick” anymore. Jennie is dying. She has a monster inside her and it has tortured her for so long that her body is giving up, one organ at a time. Her liver is failing. Her heart is exhausted. Even her skin has been lacking in nutrients for so long that it is losing its ability to heal. Unfortunately, even if Jennie made a miraculous recovery tomorrow, the damage that has been done to her body over the course of her short life goes so deep, her lifespan will never be what it could have been.
One of the scariest things about Jennie’s disease is the sheer number of people it affects. Millions of Americans struggle with eating disorders, and too many of them lose the uphill battles against them. According to the American Psychiatric Association, anorexia has the highest mortality rate of any mental illness, often resulting in suicide of heart failure. There are so many treatment facilities committed to helping men and women who struggle with eating disorders, but without insurance, these facilities are virtually pointless. Without insurance, very few people would be able to go into treatment at all, and the already enormous number of deaths would become immeasurably higher.
Medical treatment is expensive, far more expensive than the average person can afford. And without it, people suffer and get sicker, and die. These are relatively obvious statements. Hospitals and treatment centers can only go so far to help people afford care. They have machines to run and staff to support and bills to pay, and as with any business, those numbers add up. As a nation and a world, we need insurance. We need something that promises we will have access to the help we need in the event of an emergency and in situations like Jennie’s, where illness completely takes over. When a person is suffering from a debilitating illness, they deserve to have security in the knowledge that they are not alone, that someone is willing and able to help them.
I do not believe it is anyone’s fault that Jennie is in this situation. I don’t imagine someone sitting in a fancy office, intentionally denying her the opportunity to recover. Everyone is doing the best they can to make it okay again. But sometimes, tragically, that isn’t enough to save the day. I do believe that not every story will be as sad as Jennie’s. I believe that insurance makes it possible for so many people to have a future, where they wouldn’t have had the chance otherwise. For every person like Jennie, who might not make it, there are scads of people who will live because of insurance. People who will grow up to become advocates and scientists and chefs and doctors and anything at all that they could possibly want to be. And I also believe that the number of people who get stuck in a situation like Jennie’s is going down. As insurance becomes more accessible, I am optimistic that Jennie’s story will become increasingly rare. We need insurance because without it, her story will be a commonality. As a nation, we cannot let that happen.
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