Insurance companies have a special place in my heart. A very, very special place. A special place that is shared with Megyn Kelly saying that Jesus is white, snowstorms in March, and the day that holiday drinks go away at Starbucks.**
I didn’t think twice about insurance companies until I developed an eating disorder. Since that time almost 13 years ago, my experience with insurance companies have coincided with anger 99% of the time. In fact, in my life, there has been a strong positive correlation between insurance company communication and deep hatred about humanity.
How shall I paint a portrait of how I came to feel so strongly? I will start with stories. One of my friends’ parents sold money saved up for her wedding to send her to treatment. Another friend was diagnosed with Bipolar Disorder at age 18, and as a result, she was denied insurance coverage for almost a decade because of her “preexisting condition.” Last year, after going through a hard time, I considered doing intensive outpatient treatment for my eating disorder. However, I “didn’t qualify” (aka I wasn’t “thin” enough). After probing, the insurance representative admitted that if I lost more weight, I would have a more “compelling case.”
These are only a few of the examples I have. I could list dozens more– people who have been kicked out of treatment because they no longer meet the criteria for anorexia (because when you’re 86% of your ideal body weight that’s “better”???), people who are dying because they cannot get treatment for their eating disorders. People whose families have taken out second mortgages, spent life savings, taken out loans– just to get mental health services. People who have to be at a life-threatening weight to qualify for insurance coverage of treatment.
When I developed an eating disorder, I had no idea how costly it would be to recover. An outpatient team is supposed to consist of a psychiatrist, general medical doctor, therapist, and dietician… that’s a lot of money. When you look at residential treatment, the picture gets way worse. It can cost about $1000 a day to be at a residential treatment facility, and if you have a severe eating disorder, you might need to stay for 4-5 months. The costs accumulate… $100,000, $200,000 for a residential treatment stint, $30,000 a year for outpatient treatment, and recovery can take 5-10 years. Plus relapses.
You should not have to be rich to recover from an eating disorder.
Our system of mental healthcare is unacceptable. When I see people having to call Blue Cross or Aetna or HealthNet or whatever, bawling their eyes out, because they are refusing coverage for them to be a healthy, functioning member of society, you know there is something wrong. When an insurance agent is telling me that I need to get sicker because at my weight, my case doesn’t warrant treatment, you know there is something wrong.
How messed up is this? Let’s just pretend for two seconds that the diagnosis is cancer– can you imagine an insurance company saying, “Well, sorry, you’re in stage 2 of cancer, and you have to be in stage 3 before we cover treatment.” No!!!! You need to beat the cancer, and the earlier the recognition, the better! Why are mental health issues somehow viewed differently?
This boils down to something much greater– and much more complicated– than individual coverage. It relates to our priorities as a country and what we prioritize as a “right.” Do people have the right to recover from a mental illness, or do they have a right to receive the services they need? What do we value?
The answers to that question get deeply philosophical, political, and personal. Obviously my thoughts on this topic are far from innovative– mental health parity has been a subject of legislation for quite some time, and parity has culminated in 2 recent acts- the Mental Health Parity Act of 2008 and the Affordable Care Act. Discussion especially about the ACA is polarized. Even in my mental health policy class, talk about the ACA was politically charged. People are angry, happy, relieved, upset, furious– depending on one’s political ideology, the range of responses span across a spectrum of strong emotions.
I am not going to try to cover the entire topic of mental health treatment, parity, and coverage in our country. That could be a novel– or 10 novels. What I will do is speak to my personal experience of an eating disorder and emphasize humanizing people with mental illness, including eating disorders. Other conversations about coverage, and cost, and parity need to happen, but that is for future posts.
Stigma about mental health conditions is predominant, and at least in my experience, I have internalized a sense of self-stigma. I have this internal voice that taunts me, You are too much. Then how am I supposed to feel when my society, my government, is telling me that I am not good enough? Forget the cost, that message of de-valuing, the reminder that I need help, is so painful. I put so much on myself, why does society have to put that burden on me as well?
With all of the out-of-pocket costs I have paid over the years, I could probably have taken multiple world cruises. I have been privileged in having received help, but independent funding sources should not be a pre-requisite of the right to recover.
If I could boil what I want to do with my life, one social ill that I would like to see solved, it would be this: that people with mental health issues, invisible issues, would receive the coverage that they need. They would not need to get sicker or end up committing a crime and in prison or have to justify– beg– to third parties. They would be met as individuals– as humans– as members of society who deserve our help. In our society, cash is king. Costly people and things are to be avoided economically. Even that label is stigmatizing. It denotes the idea that certain people who need help are burdens.
You cannot know someone’s story based on their scars. You don’t know what goes on behind closed doors– the pain the exists underneath. Invalidating that is invalidating that person’s right to exist as an integrated whole of a lifetime of experiences. Just because pain is invisible doesn’t mean it is less real, nor does it deserve to be treated any less than other diseases.
Why are people with eating disorders not given insurance coverage? Is it because the cost is a burden on society? Is it because eating disorders are increasing in our society? Or is it something deeper and more systemic about education and beliefs about eating disorders? I hear it in comments that “slip out” about eating disorders, often from well-intentioned people, “Why don’t you just get better on your own?” “Why can’t you just eat?” Is that a mistake, or lack of education? Or is there a deeper stigma that is underlying that is so embedded into our infrastructure, a sense of judgment around mental health issues?
I don’t know.
However, I do know that we make value judgments every day on who is “worthy” and “unworthy” of help and services. Our government does it, our world does it, our policies do it, families do it, and individuals do it. Groups do it, cities do it, and states do it. We need to cognizant of those choices and the implications that has on the humanity of the other.
In my lifetime, I would like to work so that the following words not need to come out of my mouth, “I want to move to Minnesota because their eating disorder coverage is really good since someone sued x insurance company.” It is so pathetic that law suits so that insurance companies “cave” and cover treatment for eating disorders (okayyyyy fineeeeee you’re dying of bulimia and anorexia, I guesssssss you can get help… but it better be cheap) is our primary modality of achieving parity. The fact that we have law practices designed to sue insurance companies about eating disorder coverage is good, but the fact that we need to have that at all is absurd.
I am not hopeless about our prospects of our country. I am reassured that we are working toward achieving parity through recent policy. The increased research, awareness, and education about eating disorders will penetrate into the system as long as we do not remain voiceless. In sharing struggles and advocating for each other and ourselves, I think we will find justice and healing.
**Disclaimer: I don’t actually hate insurance companies and those who work for them. Actually, my uncle works for an insurance company, and he is a great person. When I say “insurance companies” I am mostly referring to the systemic forces that underly America’s healthcare and our current system of private insurance.