As a tribute to the world-changing man Seth Roberts I am re-blogging his final column, submitted to the website BetaBeat.com just before he unexpectedly died while hiking last weekend. I met him over a year ago and he was shy yet child-like in his curiosity and wonder. Seth is already missed but has helped so many people take charge of their own health by tenacious self-experimentation and the philosophy that in our own “experiments of one” we can find something close to a happy and healthy life. Seth is NOT in a better place. He should be here, still doing his beloved work. -Andrea
Pop quiz: which clinical mental disorder has the highest mortality rate? It’s not bipolar disorder. It’s not schizophrenia. Rather, it’s that heady place where out-of-whack brain chemicals meets up with out-of-whack societal beauty standards and renders a person incapable of eating enough to maintain their physical existence: anorexia nervosa.
Everyone knows that anorexia is horrible-tragic-shocking, but one thing it does have going for it – it is VERY visible.
Do you have any doubt that this person (who is in their 20s, by the way) has a problem?
That’s Ilsa Paulson, who looked pretty normal in high school, only to turn pro after college and got lean. Really, really lean.
On the other hand, how about this person?
Yep. That’s Hollie Avil, who retired from triathlon at age 23 because of trauma from eating disorders, depression, and general breakdown.
That’s the rub – in a strange and bizarre way, anorexia is easier to spot and therefore intervene. I’m not saying that such interventions are successful – there’s a good reason why those mortality rates are NOT falling – but for some sufferers who have hope of recovery, it can make a critical difference to hear someone say, “I really care about you and I think you might be harming yourself. Please know that I love you and want you to not die.”
But for every obvious case, there are likely hundreds who suffer almost in silence. Ironically, they can suffer more because if they don’t look the part of the eating disorder patient it can be internalized as a failure – a failure to successfully execute this disease that they identify with control and perfection.
That’s the gist of this post, during National Eating Disorders Awareness Week, to get you to contemplate people in your life who might be on that edge. Those who could be slipping into habits that lead to a real problem, or those that simply spend years and years and years just under the threshold of a real diagnosis. They can eat just a tiny bit less than they really need (instead of eating a LOT less than they need), while bones are weakening, muscles are atrophying, organs are shrinking (!!!), metabolism is shutting down, the brain itself is undergoing structural changes under one’s skull.
This is not as ludicrous as it sounds – I have weighed 25 pounds less than I do now, and honestly you could look at me and be like, “Ok, yeah, she’s a little smaller, but 25 pounds smaller? She’s not scrawny, like real eating disorder scrawny!” Those pounds came from skin and fat and muscles, yes, but they also came from my organs, and my bones, and my glycogen stores.
Here’s the thing: you can’t help if they are not ready. But I do believe, strongly, that if you care about someone and you tell them you care enough about them to want them to stay in your life, at absolute worst, it CANNOT HURT. Awareness of self is one of the first steps if recovery will happen.
I lost someone recently who “successfully” managed their level of disorder for more than 20 years. It’s true that you can ‘get away with’ a great deal of abusing your body with lack of food – we are remarkably resilient creatures. But not forever. She was a talented runner and no doubt helped by a very low weight (a subject for another post), but in the end her systems were too beat down, taxed, and on the edge to make it through acute dehydration due to the flu. It’s a fucking shitty way to die. My friend loved helping other runners achieve their goals and loved helping kids get excited about running. If a car came barreling down on them while on a run, I have no doubt she would have gladly shoved them aside to take the impact herself. That would have been an O.K. way to go, especially at 46 years old. How she did die should not have happened. But. It. Did.
Finally, she was not just some anonymous friend that I need to hide. She was Susan “Sus” Brozik.
Find your little-bit-skinny, little-bit-obsessive, little-bit-food-paranoid friends and tell them you appreciate every part of the good things they do. If you think it’s not too much, also tell them that their healthy body is the thing that lets them do those awesome things, and you’d love it if they kept their body around for a long time.
When I got the envelope in the mail from my private health insurance company, I didn’t think much of it. They send me various stuffed envelopes all the time, usually containing something I just need to file or toss out.
This one, however, was different, beginning with the ominous statement, “your policy will end on December 31, 2013.”
So, I became one of those folks in the group represented by outraged reporters talking about how Obama said, “you can keep your policy if you like it.” and then went back on his exact words. I “liked” my policy, in that it was relatively cheap and gave me catastrophic coverage in the event that I have something happen that could otherwise bankrupt me. I’d be out my huge deductible ($6K) and then not a penny more.
But that sounds like it might never have actually happened: people with plans like mine have had a long history of getting dropped by their company the second it appeared your account might start requiring lots of payouts. Generally the (legal) reason cited is that you withheld information on your original insurance application. Say, your claim involves checking out and biopsy of moles on your skin – the company could say that you didn’t note that you have lots of moles. Or, you are getting treatment for back pain issues but never mentioned in your application that you’ve ever felt a bit of back pain in your life. That’s an undeclared pre-existing condition, and therefore eligible for policy exclusion.
And it gets worse – the internetz are full of these kinds of reports from consumers:
- Getting cancelled by Wellpoint for breast cancer
- A 32-year old has to have a social media “bake sale” after being denied cancer treatments by Aetna (which started a mini Twitter explosion leading to Aetna picking up his policy again….)
- Justice.org’s (a trial lawyer resource site) PDF about how insurance companies attempt to deny claims
- A 22-year-old gets a nasty disease and is dropped by her policy, spurring fundraising locally.
- College student gets dropped days after turning 19 because company says it can’t prove she’s a student.
- And, in case you missed some, a Compilation of online news headlines on Reddit about insurance corruption
There was no law against this. So if that catastrophe happened, the insurance company could have (and might very likely have) paid out some hospital days or one inital ambulance ride, then called the whole rest of it a separate case (due to that pesky pre-existing or bad application stuff above) and dropped me like a hot potato. No recourse, only bankruptcy. Or a legal battle that you as the patient MIGHT win, but might not.
Then, there is my friend on the East Coast, paying for private insurance that costs far too much and hoping against hope that this whole Obamacare thing that is coming might actually benefit her and her partner. But she is very wary:
I’m afraid to be excited about this
A summary of our befores and afters:
- ME, Before: $120 per month with almost certain droppage after a major event. ME, After: $190 per month with far better basic coverage and no chance to be dropped.
- Her, before: $729 per month for “insurance” that did almost nothing she needed. Prescriptions were mostly out of pocket because the deductible was too high. Her, after: $341/mo with much lower deductible on prescription coverage. Her out of pocket per year goes from ~$8700 to ~$4100, and that’s just premiums. Nice deal.
And that’s how it works. It has to work that way. I am one of those gravy insureds: I am healthy. I’ll withdraw a few hundred bucks per year or less of my annual premiums in benefits. I am the person who helps to subsidize my friend on the East Coast. I am critical in the system as is everyone like me.
A special thank you to Julie today!