Tuesday, December 6, 2011

Day 257: Does the CDC Care About Eating Disorders? Or, Why My NHANES "Preliminary Report (Card) of Findings" Made Me Feel Fat

Except I didn't exactly get an A+....
A few weeks ago Michael and I won a lottery.  Okay, okay - not the kind where you get rich, but we were (kind of) randomly selected to participate in NHANES, which stands for the National Health and Nutritional Examination Survey.  Only 520 residents of San Francisco county were chosen, and 70% of those were Asian-American (called "over-sampling"), so the fact that Michael and I (über-caucasians that we are) were picked was really unlikely.  (Actually, when I asked our field interviewer why/how we had been chosen, she shifted through some papers and replied "Hrmmm... well, it says here that you're part of our 'low income' group..." Ouch!)

For the past 52 years, the NHANES has been conducted yearly by the national Centers for Disease Control and Prevention (CDC).  It's the nation's most comprehensive study on the health and nutritional status of Americans.  I've run across numerous academic articles citing NHANES data in my own research, so the opportunity to actually be a data point for this study was totally intriguing to me!  When we were asked be interviewed in our home, and then to come to the study site to participate in numerous medical tests, I didn't hesitate for a second.  Michael acquiesced, even though it wasn't his idea of a fun Sunday afternoon.  In addition to the pure coolness of the experience, we received a lot of (free) medical tests, and were paid a few hundred dollars for our time and participation.
One of the CDC NHANES health study trailers!

Michael at the NHANES site.
Well... so far everything I've told you was very cool and exciting.  The medical tests were also interesting: we had to change into medical scrubs and were guided through a maze of trailers, set up with dozens of stations for medical tests.  In addition to the typical height/weight data (more on that below!), I had my hearing tested, my grip strength tested, I reported on 24 hours worth of food intake (down to every tablespoon of buffet food I'd sampled at Whole Foods!), as well as numerous blood tests.  I received a full body scan, and had various odd body measurements taken, such as the length between my shoulder socket and my elbow.  I peed in a cup, and spat in a vial.  Fun stuff, right?  Well, I thought so too, until I was given a print-out of my "Preliminary Report of Findings".  (Warning: for those of you struggling with an eating disorder, and who may feel triggered by reading about my weight and body measurements, please proceed carefully!)

The short story here is that I was given an outsandingly clean bill of health for every item, except for my "Body Measurements" (i.e., my BMI and waist circumference).  You can check out full the report in the images I'm including in this post.  (Screw anonymity!)  My "Blood Pressure & Heart Rate" are "within the normal range", my "Oral Health" was deemed adequate, my "Hearing" was also normal, my "Muscle Strength" was excellent (!) and all of the measures taken in my "Complete Blood Count" were within the normal range.

But, at 159.8 pounds at 5 ft. 5 inches, my Body Mass Index (BMI) is 26.5, so I am considered "overweight" by our current medical standards (though I would have been considered "normal weight" just a few years ago!).  Add to this the fact that my waist circumference of 36 inches is 1 inch above the recommended maximum, and suddenly I've been warned about "an increased risk of health problems such as type 2 diabetes, high blood pressure, and cardiovascular disease."

Okay, so those are the "facts" of the story.  Here are the feelings: it completely sucked.

I've embarked on a serious (and very public) self-acceptance project in which I haven't seen myself in the mirror in months, and I conquered an eating disorder almost a decade ago.  Add to this the fact that I KNOW that I'm at a healthy weight for my body, and - here's the kicker - I'm intimately familiar with research published by the CDC (yes, the same CDC running this study!) illustrating that the "overweight" BMI category actually has the LOWEST mortality rates (yes, that means lower than the so called "normal" BMI category).  In fact, my current BMI of 26.5 is basically at the "sweet spot" for low mortality rates, according to this CDC study, and many others.

I've read these studies, and know the data.  I've been a co-author on research examining bias in news-reporting on overweight and eating disorders (Click here to read my favorite!).  Oh, and according to NHANES, my every other health measurement was rated either "normal" or "excellent".  In other words, knowing all of this stuff, I should have been in a pretty good position to not care much about the health report card I received from NHANES.
My official "Preliminary Report (Card) of Findings"

So what happened?  I read the report and "felt fat".  (Yes, I know that "fat is not a feeling" but ya'll know what I'm talking about!)  Suddenly my "normal" blood pressure (yay!) was replaced by a warning that my 36-inch waist was putting me at risk for "high" blood pressure (ugh!), and my "excellent" grip strength didn't feel so excellent anymore.  Despite the above data, my personal history, and my current commitment to self-acceptance - especially my belief in Health at Every Size - I struggled for several days to banish the urge to go on a crash diet.  (Do you remember my Day 241 Mantra Monday post in which I wrote about needing to have "Trust, Faith, and Patience" for my body?  That was the day after I participated in this NHANES study.)

So am I really peeved at NHANES?  Well, not extremely peeved, but concerned.  I've had two weeks to put this all in perspective, and that's what I've tried to do.  I've considered my panicked reaction to "learning" something about myself that I actually already knew. Did a part of me (the anorexic part) actually LIKE being told I should lose weight?  I think that's part of what shook me.  NHANES didn't know I used to be anorexic and that their "report card" could, therefore, be triggering.  Also, there are clear instructions on the Report of Findings, that "interpretation of these measurements must be made by a physician".  For the record, my physician is totally cool with my BMI.  (I haven't had the chance to discuss this waist measurement issue with her, but hopefully she'll just tell me to stay active, wear some spanx, and get on with my life!)

Yet, now that I'm feeling more "normal" (aka, empowered and outspoken) I can honestly say that the NHANES study seems to be biased toward preventing weight gain, as opposed to preventing eating disorders.  My first clue didn't come on my "Preliminary Report of Findings" but in the wording of one of the interview questions asked during our home visit.  The field interviewer asked me if I'd "ever participated in any weight-loss diets".  My answer was "yes."  Then she asked me, "How much weight did you lose in your most successful weight-loss attempt?"  The NHANES computer program only allowed her to record the (horrifying and unhealthy) amount of weight that I'd lost in my most "successful" attempt, but there was no space to specify that "it was due to anorexia and she could have died."  Upon my urging, she added a special note, but I have no idea how this will be handled when the data are analyzed.  This is troubling: the wording of this question frames any weight loss as good, which we know isn't true.  Another thing I noticed: despite asking me to describe, in detail, every bite of food that I'd eaten in the prior 24 hours, I was never asked whether I'd purged any of this food, or if I had taken laxatives or diuretics (I hadn't, but that's not the point).  Through these questions (and non-questions), some of the most dangerous health behaviors - such as crash-dieting, purging, laxative abuse, and extreme food restriction - are made invisible.  

I know this post is getting long, so I'll end with this: participating in NHANES was interesting and cool, yet eye-opening and concerning.  For me, it triggered some (eating) disordered thinking.  Further, both the wording of some questions, and the absence of other questions, cause me to question whether our nation's most comprehensive health and nutrition survey is concerned with the presence of eating disorders at all.  Finally, if the data gathered from the NHANES studies actually show that my BMI is in the category with the lowest mortality, why did NHANES send me home with a report card describing me as "above the range of a healthy weight"?

But what do YOU think?  Am I biased for having these concerns??  Have any of you ever had a physician or other medical entity make assumptions about your health without asking the right questions??

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  1. I don't think you are biased at all. I am in the same range as you and have never heard anything from a physician that I see regularly that indicates I should be concerned. However, when I have looked online about my BMI or spoken to some "2nd opinion" physicians I have always come away with the idea that I am headed on a highway to diabetes or heart disease.
    I have also had to tell myself that I am at the weight my body wants to be at and I am okay with that.

  2. I know where your coming from. I'm trying to lose 10lbs by eating right and working out and it is killing me!! I'm not even overweight I'm 5'6 140lbs. Our society has us stuck on the fact we need to be thin. Look at the recent add w H&M. They use mannequins to photograph the clother then photoshop the model in. Really??

  3. You are right to be concerned. I've experienced this same problem with past physicians. An over-realiance on the BMI as the main measure of the health is crazy to me. What about the weight that muscle mass adds to that number? A simple ratio of weight to height isn't a complete picture. A few hears ago when I was working out vigorously and training for all my half marathons etc I was down to 151 lbs. This was a 35 lb loss for me. My body fat was in the normal range, I was strong, I was wearing a size 6 which seemed very comfortable and I was really happy beacuse I felt healthy. Then I saw a new doctor and one of the first things they said after seeig my height/weight on the chart was that I should probably lose some weight. There were no questions about my general health or background with weight loss. Just an assumption that I was not healthy at 151 lbs because that is the utter top end of the "normal" BMi range. I left shortly after.

    Don't let a study like this tear down all the work you have done so far. Though there are common things amongst humans we are a greatly varied species! This report is not tailore to tell Kjerstin if she is "healthy" because it doesn't know all about YOU. It's to give a snapshot of statistics to Female 274490.

  4. I'd love to hear how the CDC explains these mixed messages.

  5. I think you should be concerned about how the test is run, but I also think that being underweight and/or having an eating disorder is not looked at in this study because it's not what's going on with the majority of the population. Over 64% of the adult population is overweight in the US. The doctors doing this testing are looking for a black and white statistic to put in their study- is person 1 at a healthy BMI, overweight, obese, etc... I would hope and assume that your regular physician would know what's the best specifically for YOU, but these doctors aren't going to be looking for eating disorders or disordered thinking. If these doctors didn't do any psychological testing then I wouldn't expect them to get into eating disorders or any other mental health issue.

  6. This. Was. Fascinating.

    I'll admit right off the bat that I'm over-identifying with you for the "wrong" reasons (we're the same height and weight, so I can relate directly to your exact sweet spot on the BMI scale). But I've been following the unraveling of "BMI as Gospel" for awhile now as a journalist who writes about dieting and body image, and your post is one of the best syntheses of the research on its failings.

    So thank you so much for putting ALL of this out there -- I know how scary it is to share your numbers with the world, but putting your experience into the larger context of this research is so unbelievably helpful. The CDC and our public health community in general really needs to connect some of these dots between its own findings and the messages it's perpetuating about the notion of a so-called "healthy weight."

  7. For the sake of the study, I think it's important to note that eating disorders were not the focus of the study. You found yourself under criticism for your study when people took it upon themselves to broaden what it really was about too.

    There are separate studies that focus on eating disorders, while one question after the "how much weight did you loose on the diet" my have helped to clarify that it was unhealthy, it doesn't seem totally relevant.

    That being said, most doctors (good ones at least) will take into consideration a lot of factors before telling someone to loose weight. Some people including most or all professional athletes would have a bad bmi due to the weight of muscle. Your doctor I'm sure takes into consideration that you are an active person with good muscle mass.

    That being said, the fact is people with belly weight have a higher risk of diabetes - this is a fact. It's not fair, it doesn't mean you can't rock a bathing suit but, it's a fact. There are plenty of size 2's who have most of their weight in the tummy who are at the same risk as size 16's.

    The best thing to do is eat healthy and be active no matter what size you are. The area that we gain weight in is based on genes. We can do all we can to achieve our fitness goals but subject A will gain weight in her butt and subject B will gain it in her belly.

  8. This is very interesting to me. I too struggled with anorexia around a decade ago and of course struggle with disordered thinking almost every day. I have a large frame, and I remember when I sugned up for a new gym years ago. I filled out the card that they gave me for my height, weight, and build. I checked off large for build. The trainer said, no, you have a very small build, because look, your weight is in the very small build catagory for your height. Even in the height of my disordered thinking I knew how off that was. I was very underweight for my large frame. I was not of a very small build, no matter how thin I was. Yet doctors and other professionals who should know better insist on burying thier noses in their charts without taking anything else--such as eating habits, etc--into account.

    I love how all of the other tests prove how heathy you are--but all they can see are numbers.

  9. Another reason the BMI needs to be excused from medical studies. Why are smart people still using it for research???

    I love your shout-out to HAES; I'm a huge fan!

  10. I just want to stand up and cheer for your fabulous critical thinking skills and self-knowledge and introspection. Great job at deconstructing the blind spots in NHANES. I could not agree with you more that a study of the nutrition and health status of Americans that has no clue about asking competent questions around weight loss practices and makes the assumptions that weight loss is always good is completely lacking input from a key population - i.e., everyone in the country who has ever struggled with disordered eating. That, my friend, is no small number, and the weight cycling of millions of people may in fact be one reason why people got somewhat heavier (by about 15 pounds) in the 1980-2000 period. You won't read it in the news but it is on the CDC website that our weights haven't changed much since then. That matches the other curious inconsistency you noted between your apparent odds of living longer because you are in the "overweight" range and the warning you got from your "report card."

    I want you to keep shouting it from the rooftops that the way our public health folks are addressing these issues is actually creating more harm than good. Thank you for your support of Health at Every Size, an approach I and my colleagues have been working on for decades. The HAES perspective comes from the experience of working with people trying to recover from eating disorders and weight cycling, as well as the empirical research on what actually helps people be healthier.

    Stay true to what you know from your experience. If we could all do that maybe we would get better quality research and better answers about what is really harming our health and the role of weight stigma in our lives.

  11. Thanks Amy Harman for sharing this link. What a wonderful post and a perfect example of how health is frequently overlooked in favor of numbers on a scale or a contrived formulaic mechanism to label people. I too had a bit of a "relapse" when despite my healthy numbers in all areas, my BMI revealed that was teetering on obese. The negative associations we have been brainwashed with are so difficult to dismantle. But it can be done and I applaud you for your honesty and your commitment to HAES(sm) as a healthy self-positive lifestyle.
    Warmly, Dr. Deah Schwartz, leftoverstogo.com

  12. This really rang true for me because of an experience I had with a doctor when I was 16 or 17. I was in excellent health and great shape. I played several sports and ate properly. Flat stomach, etc. (I only specify that to illustrate my point). My doctor looked at the chart, looked at my weight and told me that I needed to lose some weight because I was "chunky". Now, it never bothered me personally, because I just thought the woman was nuts. But even at that time, I thought "That is not something to tell an impressionable, healthy teenager". A) Because describing a young girl as "chunky" lends more to a description of appearance (and was completely inaccurate), not health and B)Because it did not take ME, the patient, into account, just numbers on a chart. Luckily, I wasn't someone who struggled with an eating disorder, but had I been, that seems like the kind of thing that could have triggered a relapse in thinking. Additionally, the fact that there was so much focus on what the NUMBERS said and not what my actual body said really worried me. There is such a wide range of body types that using one standard to measure all people seems counter-productive and downright harmful at times. I really appreciate this blog and the way in which you shed light on the various ways in which society (including, unfortunately, some health professionals)encourages women in particular to use their physical appearance as the primary measure of health. The fact that despite all of your medical tests yielding positive results, you were told that you needed to lose weight because of the aesthetic measures is really telling. While I agree that the focus of the study was not on eating disorders, I do think that using data (amount of weight loss)that is incomplete to determine someone's health results in an incomplete assessment at best. I hope that more people can start to objectively evaluate the information that is provided for them as well.

  13. I'm disturbed that you were selected for the "low income" group. NHANES can usually come up with negative results regarding the effects of SES. If they are including graduate students as representative of the lower classes, I can see why.
    Research is supposed to be conducted with an open mind as to outcome. It seems that the CDC is strongly biasing the result to finding poor health in people with higher BMI. If higher BMI subjects are subjected to medical hexes ("you will suffer diabetes, heart attack and death because your body does not fit our charts!") and encouraged to feel badly about their bodies, this will affect outcomes. I imagine low BMI people are congradulated on their great health and told to keep up the good work.

  14. THANK YOU! You inspire me so much! I really appreciate how you shine a light on some of the unhealthy thinking that has become prevalent in our society. I'm lucky enough to have a doctor who has encouraged me on more than one occasion when I've gone to her discouraged about my weight. I do happen to be within my "healthy weight range" according to the BMI, but just barely. I'm currently training for a half marathon and am significantly more healthy (and happy) than I was four years ago (when I was 20 pounds lighter - probably mostly because I was living on cigarettes and coffee), which my doctor kindly acknowledges: "Sometimes a few extra pounds when you're active and eating well is healthier than being skinnier," she told me. Anyway, the point is, I love this analysis of the mixed messages we, as women, get. I love that you succinctly stated so much right here. I'll be sending a link to this post to all of my girlfriends. I can't thank you enough for being willing to share your journey with all of us. You. Are. So. Brave. And you've helped me be able to look in the mirror and celebrate my body. Keep up the good work!

  15. I'm a "bigger" gal, with a BMI of about 30-31. Waist is usually around 36-37, I weigh about 170. According to those stats, yeah, I'm way overweight, and I have been told my doctors that I will be unhealthy, die early, etc etc etc.
    I can also bench press my weight. I can work out in the field or on the job site and keep up, hike 10 miles and still feel good, or run with my daughter all afternoon. I'm strong, capable, beautiful, and it's taken me years to realize this while looking in the mirror at my size 10 body. I've struggled for years with the idea that I'm unhealthy. When I was much larger (I wore a size 22 for about 2 years), I had pre-diabetes, high cholesterol, and a thyroid issue. I got into shape (though lost little actual weight), rid myself of every one of the health concerns, I feel the best I've ever felt, yet BMI still tells me I'm obese.
    I love reading your articles... They help me to realize I'm not the only one struggling with this (in the back of my head I know I'm not, but having it out there is really great), and I think that you're right - these government health organizations are trying to keep us healthy, yes, but they have a very narrow view of what they feel is actually "healthy". I hope this trend stops so we beautiful, healthy women may not feel ashamed in our "plus-size" jeans.

  16. Hey everyone - I want to thank all of you for your comments here. They have helped me feel less alone (and grumpy!) about my NHANES experience. I'm hanging in there, determined to stay healthy and happy, even if that means being technically "overweight"! NHANES, you can kiss my big fat 36-inch tummy. :)

  17. In your new home, rather than covering all the mirrors with fabric, perhaps try some of those self-clinging window films that obscure glass.
    Here is a picture of a high end version. (with openings for some mirror visibility for Hubby) Just a thought! Home Depot or Tap plastics sell the boring plain frost kind, but the more interesting ones are tempting.

  18. I live in Texas and in highschools now they make you do this fitness test.I am a short person(5'0"). The resluts always came back that I was overwieght and out of shape. I was 100 pounds and healthy and comfortable with myself!(weight not due to lack of eating I assure you-man I miss moms cooking right now!) It really made me mad that they were saying things in a biased way that made a lot of kids feel very uncomfortable with themselves.I was just mad about how they forced us to be tested and ranked pretty much; it didn't affect my self view but I know it affected others.

    Now I am in college and upon reading your blog for a couple days I realized looking in the mirror a lot is not something I do all that much. Happy to realize it. One thing art school is for me is an accepting family who does not care if I have some soot smudged on my face!

    Glad you are doing this. Best of luck empowering yourself and others!

  19. Society (even our own immediate family) unfortunately puts too much emphasis on weight. Example - "What do you weigh now - a hundred and eighty?!?" I will never forget hearing those words after gaining the "freshman 15" (well maybe a little more) after my first year of college. Words hurt. I'm so proud of you, Kjerstin!
    Aunt Sarah

    1. ugh, that's awful. I can guess who said it, too! :P

  20. You are so right! Thanks for doing the hard work of bring eating disorders to light.

  21. You're not biased. I had to take a "health assessment" through Anthem for my health insurance. They gave me a low score since I used to smoke (quit 9 years ago, thank you very much) and said I had a poor diet, which I don't. I am trying to be healthy, but for my height (5'8), 172 pounds is considered obese. Obese, really? It's discouraging.

  22. I have worked for the survey research company that administers NHANES, Westat. Do contact them with your concerns. I can't promise they'll make changes, but I do think they would want to hear what you have to say. Call 1-800-Westat-1 and ask for a research assistant on NHANES. Good luck!

  23. Kjerstin,

    We met at ASA last year in Las Vegas, and I've been checking in with your blog since then from time to time. Reading about your experience with the NHANES was *fascinating*, and I'll second what someone upthread said about your critical insights about the survey. One would really think that a study designed to look at health and nutrition would be aimed at multiple dimensions of health and nutrition as they relate to body size, not just "are you fat or not?". As a fellow researcher, it really bugs me that one of the biggest datasets available to us on these issues has these biases. In any case, thanks for sharing your story and analysis, and I hope the Bay Area winter is treating you well.

    Best wishes,
    Kate Mason

  24. I recently found your blog through a friend, and wanted to congratulate you on (nearly) accomplishing quite a feat! Your project is innovative and interesting, and your writing is certainly captivating. However, when I saw this post, I felt that as a physician I could offer some insight into how the "other" side thinks. Let me preface by saying that I agree with many of the points you and your commenters make: BMI is a crude estimate body size that neglects many important aspects of one's health, and the limits for "overweight" and "obese" are relatively arbitrary. However, I urge you to re-think the idea that a high BMI is optimal or ideal. What the 2007 NHANES data showed was that all-cause mortality was lower, but mortality due to cardiovascular disease was higher. My issue is not with this data, however, as I feel that mortality is a gross measure. In my daily practice, I see many patients - as do my colleagues - and I can assure you that when we see gradually increasing BMIs, our thought is not that they are reaching a "sweet spot" of mortality. The concern is that they are starting on a trend that could prove deliterious to their health if not thwarted or reversed. Weight gain can be extremely difficult to reverse - studies show the hypothalamus recalibrates to a new and higher "set point", so that even if weight is lost temporarily, it can quickly be gained back to the exact same "pre-diet" weight. If you add to this slower metabolism with age and less activity as time demands increase with age and professional/personal responsibilities, it can seem nearly impossible to reverse without drastic interventions. Thus, when we see patients with previously normal BMIs that gradual trend up, our concern is that this trend will not reverse. Based on your NHANES report card, you are a young and healthy (congrats!), but our concern is that the BMI will be ever-rising. As age and BMI increase, so do patients' problem lists: diabetes, hypertension, hyperlipidemia, obstructive sleep apnea, osteoarthritis, severe gastric reflux. Elevated BMI is also correlated with a multitude of serious co-morbid conditions that there is not enough space to include: hypercoagulable state predisposing one to deep venous thrombosis and thromboembolic disease (pulmonary embolisms), non-alcoholic fatty liver disease (can lead to cirrhosis, even if you never drink), polycystic ovarian syndrome - no organ is spared. While you seemed to think little of the risk of diabetes and hypertension, I would urge you to spend a week in a cardiologist's office: nearly every patient's history will begin as such: X year old with a past medical history significant for hypertension, hyperlipidemia, diabetes, and coronary artery disease status post MI and stents (or status post CABG)". The massive public health initiatives geared towards preventing weight gain, high blood pressure, and diabetes is not an attempt to make people with sensitive body images feel bad about themselves, it is to help prevent the single leading cause of death of all American adults. While not every patient with hypertension and diabetes goes on to develop heart disease, the ratio of these patients to "healthy, normal patients with no medical history" is approximately 100:1, if not greater - and this is only the heart! Diabetes and hypertension are the leading causes of chronic, irreversible renal disease that ultimately puts patients on dialysis. It is an indisputable risk factor for these devastating conditions, and health professionals who urge overweight patients to lose weight are not trying to hurt these patients' body images - though I am sure they inevitably do - but are trying to prevent them from severe systemic diseases we see crushing patients lives and livelihoods on a daily basis.

    (continued in next post)

  25. In your case, as it seems to be the case with many commenters, you may be gaining weight right now without overt consequences, but these disease processes are chronic and insiduous, taking decades to develop and to take a toll on one's body. The reason I say all this is not to scare people into losing weight -- that is a proven ineffective technique -- but to give you a glimpse as to why the NHANES questionnaire is so focused on weight/BMI and weight loss, with such severe warnings for risks of diabetes and high blood pressure despite everything else looking good. Let me also add that I agree with you that the questionnaire is not sensitive to identifying unhealthy weight loss or eating disorders; however, while approximately 7-8 million Americans suffer from eating disorders, based on 2007-2008 statistics, nearly 68% of Americans are overweight or obese. I only mention this to put into perspective the aims of a public health study . But, having had friends and family members suffer with anorexia and bulemia, I do agree that while eating disorders may not get nearly as much attention as the obesity epidemic in the public health sphere, they are serious issues that should not be neglected in any study looking at weight loss.

    I apologize for being long-winded, but hope my comments and experiences can lend some insight into the design and aims of the NHANES study, and help explain some of the warnings and concerns you were given based on your BMI, despite your otherwise normal work-up. Physicians, or at least good ones, really do just want the best for their patients. Our concerns and warnings come from a good place, but sometimes we don't realize how damaging they can be.

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