Thursday, July 11, 2013

Dear Doctor: An Open Letter from an ex "eating-disordered" dietetics student

Disclaimers: I was never OFFICIALLY diagnosed with an eating disorder, though everyone who knows me knows I had/and maybe have one.

This blog is hard for me to write and not something I really wanted to "come out" with, but thought it was important, and very current.

I am not in any way saying these are the views of dietitians everywhere, the American Dietetics Association, the program of which I attend, nor am I licensed, registered, or credentialed, so take this with a grain of salt.

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Dear Doctor:

You  may not know this but I've struggled with food my entire life. I've struggled with the way I look at myself in the mirror my entire life. I've struggled with what other people think of what I look like my entire life.

You see, up until recently, it's not what the normal person with an eating disorder would say. I struggled with what I looked like and what I ate because all the time people would say to me, "you're so thin, it must be so nice to be so thin," or "you must be so lucky to be able to eat whatever you want to eat and not gain an ounce," or so on. So what went through my head? My value was that I had to be thin...that's what people saw in me, that's what people thought was my beauty.

Then high school hit, and everything I started eating made me sick, literally, not psychologically. But I went to your colleagues, and you told me I had an eating disorder. There was no way a 16 year old girl that was as skinny as me could not have an eating disorder while claiming to get sick from everything they ate, there was no disease that made someone sick every time they ate. So I believed it. And ate a little less and less.

It didn't help that I was running a lot, and working a lot, and doing a lot of things. I was skinny. But I didn't see it. People kept telling me I was skinny. But I didn't think I was skinnier than anyone else. Others did though. And they tried to help me. But I didn't have a problem, remember? Well, I didn't until the doctors, your colleagues, kept telling me I did.

Next, I went to undergrad and became a vegetarian. You see you were telling me that I had to start eating again. But it still hurt and made me sick every time I ate. Naturally, I felt better eating salad, no one knew why then. You also see, this was almost like an eating disorder too. I was controlling what I was eating by becoming a vegetarian. You could tell me to eat, but I was going to tell you what I was going to eat dangit. Plus, at a small, private, liberal arts university there weren't many vegetarian options so it may have been a way to self-select a lower calorie diet as well.

I became a carnivore again halfway through college, but I was still getting sick every time I ate and still making up ways to self-select out of meal time. Extra practice hours for that concert coming up, I had a lab report I needed to make up for organic chemistry, extra. Plus, I had the worlds best excuse when my school ended up on the top 10 list for the nations worst cafeteria foods year after year, who would want to eat that?

The year after I graduated college, I finally figured out why I was getting sick after every time I ate. I didn't have an eating disorder (until you made me believe I did). I had celiac disease you dim wits. A simple blood test and we could have saved all the hypochondriacs, and the this can't be happenings, and the psychologists...well, it could have saved a lot.

Most of all, it could have saved doctors telling me for 8 years that I had a disordered view of eating, when I had already had lay people telling me that my whole life. Doctors, who I am supposed to be able to present physical symptoms too and get a physical diagnosis from, gave me a psychological diagnosis (though it was never written on paper--just thrown around here and there) for 8 years. When all it took was a blood test. And all it took was a blood test, when I was so malabsorbed from not being able to absorb nutrients properly my entire life that I was almost dead and needed a blood transfusion and multiple vitamin and mineral transfusions. Isn't that your job, blood tests?

Well, I got my diagnosis, and I got sent a dietitian. And I'm still great friends with her. Hi Anna, if you're reading :) And she told me just what an "eating disordered" person wanted to hear. This diet was all about control. But I hated it, because now it was you telling me what to control, not me controlling the control. So I cheated for several months and got really, really sick.

Anyways, I digress.

So now, we end up where I am today. Mad as get out, and trying not to use bad words, because I have a feeling this might get shared by a friend of mine and I don't know where it will go from there.

I have several chronic illnesses that require the use of regular medications. Most of these medications have a side effect of weight gain. I went my whole life being as a super skinny, tiny, girl who weighed 120 pounds at the age of 25 TERRIFIED (and I'm not talking like nervous, I'm talking shaking in my boots, nauseous) over what would happen over if I got fat. And last January I weighed 120 pounds and by April of the same year (3 months), I weighed 180 pounds...and 2 months later...I was 200 pounds. This all started when I started one medication, and stopped when I went off the same medication. We know it was a medication reaction. It was not something I did, but still. I went from underweight to obese in 5 months flat.

My worst nightmare had come true in 5 months. And ya know what made it worse. You.

The first experience I had was nothing short of something that should have probably been brought to a medical board of some sort, but was taken care of internally instead, and can be read about here, in the second section. After that, it's been doctor, after doctor telling me what I need to do, and that I'm obese, and that my BMI is this. But not one doctor has told me what to do to fix it. Not one doctor has told me how to do exercises with my disability where I can't exercise at all without passing out. Not one doctor has offered to put me on a weight management plan. Not one doctor has acknowledged the fact that hey, I'm a dietetics student, I might know what I'm doing, maybe it's a metabolic problem you butt hole. Maybe, my body can't lose the 80 pounds I gained from that drug you put me on since I am sedentary and can't burn the calories I'm taken in, and since I'm still on 5 other meds that cause weight gain, it's probably not gonna be that easy to lose it still.

Well, in January of this year (1 year later from when I started gaining the weight) I started tracking my calories--following a recommended diet, just making sure I was not drinking my calories and things like that--and the weight slowly started to come off. I have been super proud of myself considering I can't exercise at all and as of today officially lost 21 pounds!

That was until I started going to doctors here recently, being all proud of myself, knowing I am going to make it (and soon I think) back into the "healthy" range of BMI. And then I walk in, and there is not one comment of you've lost so much weight, or look at you, or whatever...just you have such a long way to go. In my opinion, 16 pounds, when at the beginning of the year I had 38 to go, is nothing! I can do it.

I thought when the AMA decided that obesity was going to be a disease I was going to be excited because I thought dietitians would have more opportunity to be 3rd party payed. But what I didn't realize is, it would completely take the doctor's ability to see past what the patient is actually trying to do, and what the patient is actually putting in their mouth, and what the patient is actually saying, and doing, and trying for. Because as soon as their BMI comes out over 24.9, your are labeled overweight, and as soon as it's over 29.9 you are obese. And it doesn't matter who is on the other side of the paper that the nurse hands the patient.

It doesn't matter what emotion your patient has. What they have struggled with. What they may do to themselves because of what that paper says. As long as you comply with the government.

It doesn't matter that the government mandates that letters are sent home to 3,4, and 5 year old's at their pre-school's or WIC or from your office. It doesn't matter that to those parents they are hearing to put their 4 year old on a diet...seriously. Did you know that 80% of 10 year old girls have tried a diet? That is disturbing.

And let me tell ya a little about BMI, it doesn't mean you're fat. It means nothing. It just says height for weight. It does not take into account water, muscle mass, % body fat, anything. I know an elite athlete personally that was at the top of her game and wore a size 2 and was considered severely overweight and almost obese because she was all muscle. This girl was solid muscle. And muscle weighs a lot. BMI is complete crap.

Back to me and in closing to you doctors, my esteemed colleagues. May I leave you with 2 stories. Both about me. Both have happened in the past 3 weeks.

4 weeks ago (on a Thursday) I went into my PCP's office with a relentless migraine, they weighed me before taking me back, of course. I ended up having to go back that following Monday (5 days later) with same said migraine and some severe blood pressure and heart rate issues. I ended up getting admitted to the hospital. When I get admitted I always request my medical records just because I have way too many bad stories. Well, I went to go read my admissions documents and it clearly said at the top of my sheet where they had weighed me at the appointment Monday: my weight and then (patient has lost 4.5 pounds in 5 days!). Then I kept reading further, in the general section, where weight is supposed to be addressed, it says "Patient is visibly overweight, should consider weight management". Seriously. How is losing 4.5 pounds in 5 days, not weight management, in fact, I would believe, that would be what I would address about weight in my SOAP note, not that the patient is overweight, seems more timely and relevant to me.

Story 2. This happened today. And reminded me how much I hate BMI and doctors trying to control what's going on in my life.

This morning I posted this status:

And then I went to the doctor, had a great visit, walked out, and read this on my visit summary sheet. The doctor who wrote this (or at least allowed the computer to let the trigger go through) was overweight. Plus, she was referring a student dietitian who has managed to lose 22 pounds in 3 months by herself to a PCP who is also overweight to get weight management tips and recommending physical activity. 


I'm already not eating well because one of my chronic illnesses causes me to feel like I'm going to pass out when I eat and ironically now I'm on a medication that causes appetite reduction and weight loss. And I have a history of feeling self-conscious about how I look and feel, a history of "disordered eating" whatever that means for me, or anyone else. Plus, I have a history of having a FEAR of being big. And I finally have it in my head that I'm doing good, and you doctors go and do shit like this (oops, a bad word, but it deserved it).

Do you know how harmful you are being? Really?

Are you talking to girls about how beautiful they are (in a legal, non pervey way)? Are you telling them how to make healthy choices, and how to want to be healthy, not how to want to be thin. Didn't think so. Not if someone who has been trying as damn hard as I have with what I've got to deal with, eats an entirely gluten free, mostly anti-inflammatory, mostly liquid diet, who is almost a master's level dietitian and is specializing in diets for those with chronic illnesses...is still getting stuff like this written on her summary visit note.

Anyone who knows me, knows that my BMI does not reflect what goes in my mouth. And even if it did. That number doesn't define me. The person I am does. And what I am is a person with many chronic illnesses, who used to maybe/probably/probably does have an eating disorder, who will be a kick butt dietitian one day (soon!), who sees a major flaw with the system, and not enough girls being told they are beautiful!

Sincerely,

A concerned gal for herself, her peers, and the future gals.

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