The Silent Suffering - Main Menu
Barriers to Treatment and Recovery
UNDER CONSTRUCTION
INSURANCE
The Problem
Insurance companies are businesses. Remember-they are not doctors. They never see you. They don't know you. Their concern is with what they find beneficial to them. They don't want to spend money on long term illnesses like mental health disorders, where treatment can continue for some time.
When an eating disorder is diagnosed, it is like sticking a huge red flag on the front of a file with your name on it. Often, mental health disorders are not taken seriously by health care providers and insurance companies. If you do not have insurance already, then obtaining it after diagnosis can be at best, an uphill battle, and at its worst, impossible. Even if you can become insured, or already have insurance prior to diagnosis and treatment, often the company will limit what they will pay. They may refuse to pay for mental health care altogether, or they may limit you to outpatient treatment only. There are horror stories of individuals being dropped from their insurance after maxing out benefits, and more often than not, individuals in treatment are forced by their insurance company to leave prematurely because of the demands and restraints that the insurance company has placed.
I would like to say a bit about medical care providers before I progress forward, because they do play a role in your treatment. I can recall trips to the doctor where I was being seen for some sort of medical issue - like heart palpitations for example. As soon as I mentioned my medical history, instead of checking my heart, the doctor promptly took out his prescription pad and scribbled me an Rx for some anti-depressant drug. This left me (and my therapist) incredibly discouraged and angry. I had a legitimate problem. It was not in my head. Yet, because I have an eating disorder, I must need a psych drug because obviously everything is all in my head. I left the doc disgruntled, feeling belittled and foolish because my medical history dictated the kind of care I received. The doctor did not take my palpitations seriously, instead attributing them to anxiety, when in actuality the palpitations did indeed have a very valid cause. I was having “real” heart palpitations and if he would have checked my blood work like I requested, then he would have found my potassium was very low. This would eventually be caught, thankfully. It not only frustrated me that the doctor refused to believe something medical and not psychiatric was wrong with me, but also that even if my palpitations would have been related to anxiety, that is still a VERY REAL problem and would have been just as deserving of attention and treatment. I say all of this for two reasons. 1) Often, if your medical care practitioners are not on board with you and understanding of you struggle, it can be that much more difficult to deal with insurance. Often there has to be a lot of negotiating between doctors and insurance before some kind of coverage can be agreed upon. And if your medical or psychiatric care providers know nothing about eating disorders, or don’t take them and the way they impact your life and body seriously, then why will an insurance company? 2) Don’t allow yourself to be treated in that way. Voice how you feel. And if your care is unsatisfactory, find another health care provider. I did not return to that doctor again, and I didn’t fill that useless prescription, either. Instead, I got a few other opinions and my lab work did the talking for me.
It can be difficult to find insurance coverage for someone diagnosed with an eating disorder. I'd like to give you a bit of a personal testimony regarding the woes of insurance and eating disorders.
A Personal Story
When I first began treatment for anorexia in 2001 we didn’t really know what it would be like from a financial aspect, but we quickly saw that even on an outpatient basis, insurance companies treat mental health issues like eating disorders as if they are a joke. Eating disorders are rarely recognized as serious illnesses even though they have the highest death rate of any mental health disorder. My therapist really had to go to battle for me just to get me into my first treatment program despite being very ill and underweight, and 5 weeks into that program, the insurance company pulled out after agreeing to see it through. They said they wouldn’t pay anymore. Then, not only did they say they’d stop paying for any further treatment in the program, they also refused to pay for the time I’d already been there (though it was already agreed upon). So, the ED program looked to my family, but more specifically ME (I had just turned 18) to pay the full amount of treatment – which cost thousands per day. Of course I couldn’t pay that, and my parents told the hospital if they expected to see any kind of money from them they had another thing coming. Apparently, the hospital was already immersed in a lawsuit with the same company we were insured with so they were going to be dealt with accordingly when it came to my case. The next year rolled around and my dad’s work switched insurance companies. I thought the new, larger insurance company would bring better benefits, but boy were they even worse. They only paid up to 50% of my outpatient (leaving me with quite the hefty co-pay) and when I went back into the treatment program the next year, they put a cap on my treatment after only TWO WEEKS. What can you accomplish in two weeks? I mean, seriously?! They also informed me that I’d maxed out my LIFETIME mental health benefits. Gee, thanks. So, you can imagine that the insurance was all to eager to get rid of me and probably rejoiced the day I graduated college and came off of my parents insurance. I have been uninsured since. My husband and I tried to get insurance when we first got married in 2007. We literally tried every insurance company out there, and they all saw anorexia in my medical history and I was promptly denied coverage. They all had a lot to say about it but essentially since you can’t “cure” an eating disorder, and because treatment is so long term and outrageously expensive I would not be able to get coverage. I was also told that I didn’t meet the height/weight requirements set forth by the companies (obviously if I’ve been diagnosed with anorexia that area can be a problem). Several companies told me that I was wasting my time because “no one will insure you because you have anorexia”. Others said that maybe one day, when I’ve been treatment free for at least a decade, I could possibly be considered. Thanks again.
Thus, I am part of the uninsured group, in need of medical care but unable to afford even a simple checkup. This should not be acceptable, but unfortunately, my story is not unique and this saddening reality has yet to change.
Mental Health Parity
[section coming soon]
Links pertaining to Mental Health Parity
FREED Act
House to vote on Mental Health Bill
NY Times - Parity Law Passes
Documents and information on the problem of insurance:
Eating Disorder Coalition's PDF on Insurance issues
"NOT SICK ENOUGH"
This is a quite common belief among people with eating disorders, because often the degree of severity of the disorder is judged erroneously by a person's appearance and weight. As a result, many people with eating disorders fail to seek adequate treatment, or any treatment at all, because they believe they are not sick enough to need help. Also, in considering the distorted body image that comes with an eating disorder, the sufferer may feel and see themselves as normal or overweight when in fact they are not.
The misconception of not being "sick enough" isn't just found in individuals with the eating disorder, but can also be perceived by family, friends, and medical care providers. Friends and family may believe that their friend or loved one is "ok" or doing "better" because they look 'healthier' or don't look sick or emaciated. When others view someone with an eating disorder this way, it discourages them from seeking help. Additionally, medical care providers are not adequately trained for the diagnosis and treatment of eating disorders. They may wrongly perceive someone as being ok just because they do not appear emaciated or because their bloodwork is not abnormal.
DENIAL
The issue of denial can also correlate with the belief that "I'm not seek enough to need/deserve treatment". If an individual with an eating disorder doesn't see themselves as controlled by their ED, and if they aren't absolutely miserable with it, then that could lead to denial. Sufferers may also look to those around them to dictate how ill they are, and if it is not seen as a serious problem then they may convince themselves that it's really not that bad.
Denial can also be experience by family members and friends. They may not want to believe that it is truly happening, or that it is something that needs attention.
While considering the amount of press eating disorders get, you may think it impossible that someone wouldn't know what is going on, but to this day many have little/no knowledge of ED's. Someone may be suffering and not know it, which could lead to denial. Or, they may know all about eating disorders, but not see themselves in the same light. I did not know what was wrong with me when I was younger and only later did I discover eating disorders. Even then , I didn't think I was anorexic, because I didn't realize that I was in fact, emaciated.
Most people don't want to admit that something is wrong, or that it could be so bad that it warrants medical attention.
DIAGNOSTIC CRITERIA
The diagnostic criteria for eating disorders, specifically anorexia, has been a prominent issue for sufferers and psychiatric care providers. Often doctors who know little to nothing about eating disorders rely soley upon the criteria listed in the DSM-IV to diagnose someone who may have an eating disorder.
The two most problematic "requirements" are the loss of menstrual cycle and weight of the individual. Usually, if these two components are missing, an individual would be diagnosed with "ED-NOS" rather than anorexia.There are many cases of individuals with anorexia who do NOT lose their menstrual cycle, even when severely underweight. Does that make them any less a sufferer of anorexia? NO.
The weight requirement brings up a number of issues. First, it can perpetuate the disorder by making sufferers feel "not thin enough". Second - an individual can be underweight, but due to the diagnostic criteria a physician may rule their illness as less severe because their weight is not below a certain percentage. Lastly, due to recovery and times of struggle, weight may fluctuate, and medical care providers may cause feelings of "inadequacy" in those with anorexia who have gained weight but are in need of treatment. Also, there are individuals who have lost large percentages of body weight, but are not considered underweight, and due to the criteria, they may not be diagnosed at all.
You may go here to sign the petition to the APA to change the diagnostic criteria for Anorexia Nervosa. A revision to the DSM-IV is underway and is tentatively scheduled to be released in 2012. To learn more about this , visit the APA's website.
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