How Stigma Keeps Us Sick

Stigma.

It exists and it impacts all of us who are affected by mental illness.

I’m sure this isn’t new information, but a reminder now and then about the dangers of stigma doesn’t hurt. Plus, I’m feeling rather irate after the week I’ve just had.

As you might know from reading my last few posts, my battle against Blue Cross Blue Shield, thankfully, ended well. Ultimately, I got (mostly) what I needed: I was granted 10 more days in treatment. But it came at a cost. During my week without treatment, my eating disorder was constantly at my heels. In order to build my case against Blue Cross Blue Shield, I had to review my own case files and read details about my history and current psychological state, which was an extraordinarily difficult thing to do. Worst of all, though, rather than devoting all my energy to recovery and getting better, I spent an entire week vociferating to a group of indifferent insurance representatives why I was, in fact, very sick.

Now, there are many reasons why this situation unfolded the way that it did. First, there is the situation at the top: insurance companies are businesses. Yes, they are technically in the healthcare field, and yes, the good-hearted among us want to believe that puts them “on our side” when it comes to our health and wellbeing. But at the end of the day, insurance companies are in it to make money. On the one hand, this is understandable — after all, a business that doesn’t manage its finances smartly won’t last very long. But on the other hand, I would hope that businesses at least ask themselves what the human cost their business strategies carry.

Second, there is the situation at the bottom: a lack of patient education. Insurance companies bank on the fact that most people will give up after they are denied treatment. Those who do appeal the denials — once, twice, even three times — will also eventually give up, simply because the fight is so time-consuming and laborious. So, in the end, insurance companies are left to pay only for the smallest subset of people who fight back and don’t stop until they get the result they need.

Mind you, lack of patient education is indeed a problem, but in no way is it the patient’s fault. We do not spend our spare time preemptively learning the complexities of the insurance and healthcare system just so that we’ll be prepared should calamity strike; rather, calamity strikes, and then we are thrown into that unnavigable system. We learn the system along the way, all the while coping with a debilitating illness (not to mention every other responsibility we carry in life). And we certainly don’t expect our insurance case managers to pull tactics like stonewalling and outright lying — which they absolutely do.

To make matters worse, when we are devoting all of our energy to merely staying alive, there is not much energy left for such a fight. The first time that I attempted to advocate for myself with a case manager at Blue Cross Blue Shield, I was very weak and very sick. Eating disorders cloud your thinking and can even cause cognitive damage. Needless to say, I lacked the cognitive wherewithal to debate this person. So when she began to stonewall, I couldn’t fight back.

So, correcting this situation will require both top-down and bottom-up changes. Insurance companies need to change the way they treat eating disorder patients, as well as all those with a mental illness. But for them to do that, we in the mental health community need to put pressure on them by making enough noise for them to hear us. And while we do that, we also need to take care of ourselves — which, sadly, means going any lengths to get the treatment we need.

But there is one more thing that I think contributes to these injustices, and that is stigma. The disregard with which insurers (and sometimes providers) treat eating disorder patients is symptomatic of the stigma that still clings to these illnesses. Even though we’ve come far in our understanding that they’re not about vain attempts to look thin, and even though we now know they are biologically-based illnesses that have far more to do with genetics than “attitude,” eating disorders — like many mental illnesses — continue to be relegated (unconsciously or not) below so-called “physical” illnesses. It’s still common for eating disorder patients to be considered less deserving of attention or concern, whether it is E.R. physicians who see patients as having “done this to themselves,” or family and friends who ask why can’t we “just get over it already,” or insurance providers who withdraw potentially life-saving treatments (which are proven to work) to save a few dollars.

We’ve come far, but there is much farther to go. Unchecked stigma, misconceptions about eating disorders, and flagrant disregard for human wellbeing keep patients sick. Inconsistent access to treatment worsens the already-low recovery rates for eating disorders. Most frightening of all, not treating these treatable illnesses means 23 people die every day of an eating disorder.

So what are we going to do about stigma? How are you going to speak out today?

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