Christine writes…

When I was 16, I caught a cold that developed into a nasty respiratory infection.  Our family GP was out of town, and his office referred me to another doctor who was covering his patients.  My mother took me.  The first thing the nurse did was weigh me and take my vitals.

As soon as the doctor came into the exam room he started berating me for being fat and having high blood pressure - nothing about the respiratory infection that had brought me to his office. I tried to tell him that I had never had high blood pressure before, but he wouldn’t listen.  He went on and on about my weight, my “high blood pressure” and how I was a heart attack or stroke waiting to happen.  “It can and does happen, even to people your age when they’re as big as you are.”  (I was about 190 at the time.)

My mother also told him my blood pressure had always been normal and perhaps - just perhaps - it was high at the moment because I was sick and feeling nervous about seeing a new doctor. (She has “white coat hypertension” herself, so it was a valid concern.)  He was just as rude and dismissive of her.  He told her she wasn’t helping me by “protecting me from the truth”, and that he was doing us a favor if it “scared some weight off” me because it would save my life. He was absolutely vile to both of us.

He then grudgingly wrote a prescription for antibiotics and cough syrup, and sent us off with a standard 1,000 calorie diet from a tear-off pad.  He even told us to make a follow-up appointment with his nurse and he’d get my “health under control.”  As if.

I left the office in tears.  My mother, normally a mild-mannered, non-confrontational sort of woman, was furious.  When we followed up a week later with our regular GP, he confirmed that my blood pressure was back to where it had always been - perfectly normal.  He said my temporary high blood pressure could have been caused by any number of things, including the OTC cold medicines I’d been taking to treat my symptoms.

So why did Dr. Scaremonger apparently never consider this possibility? Raised blood pressure is a well-known side effect of the most popular decongestant, which is why those with actual hypertension can’t take it.  You’d think this would occur to a doctor, right?  Apparently not when treating fat patients.  To him, I was in denial, a liar, and on death’s doorstep at 16, all because of the fat.

Sorry for the lack of updates here, folks. Many of the editors who run this site also maintain other blogs, and have professional careers and families that demand our time and resources. Please continue to send in your submissions and they will be posted eventually. Your voice is important.

In the meantime, I wanted to quickly let everyone know of a new way to voice health care complaints in a broader context and also a resource to help locate fat-friendly health care professionals. I’m a member of Angie’s List, a membership service that compiles consumer ratings of local service companies and contractors in multiple cities across the United States. Until now, Angie’s List offers reports of primarily home-related services like roofing and plumbing, but they’ve recently added an online medical ratings system. According to my monthly newsletter, the program allows patients to submit reviews on more than 150 different health categories, from dentistry to pediatrics, oncology to plastic surgery. And according to the newsletter, “Angie’s List wants all the details you think are pertinent to your experience.”

The program is only available to paying members, sorry - membership fees here. (In new cities where the company is building the list, members can join for one year free.) But with more than 600,000 members and growing, Angie’s List’s online medical ratings program has the potential to be one of the most comprehensive and wide-reaching online systems to date and it’s one we can use to our advantage to voice our concerns about shoddy health care received and to also help others avoid those practitioners who can’t see past weight to treat the individual.

If anyone does use it, please report back and tell us what you think. Keep in mind, your health insurance company probably offers an online rating system, too, although my company’s system doesn’t allow space to fully articulate one’s experience in even minor detail.

Lilacsigal writes…

At the start of 1998, I was a large but healthy postgraduate student, aged 24 - I was a pear-shaped 90kg at a height of 169cm, (a BMI of 31.5) I didn’t own a car and cycled everywhere, and had no health issues. Over the next few months, I started to feel depressed and lethargic, and started to gain weight, despite eating less because I was too tired to eat. I exercised less, as I was too tired to cycle, and was gaining huge amounts of weight.

I went to the University Health Clinic again and again, telling them I was exhausted and depressed, and after six months of three doctors telling me I was just overweight (and one telling me that if I didn’t lose weight I would die), the doctor I saw most often put me on antidepressants and sent me to the counselling centre. By the end of 1998 I was so exhausted that I would spend days at time in bed, unable to move, and was still gaining large amounts of weight. At this stage, I had gained 35kg - over a third of my body weight again - in less than a year. According to the doctors, this was because I ate too much and didn’t exercise.

They referred me to a dietician, but I couldn’t take her advice because I was too tired to shop or cook. By now, I had to put my government postgraduate scholarship on hold and go onto sickness benefits, as I could no longer read more than a few pages at a time without sleeping - previously I had been reading between 2 and 4 books a day. As 1999 went on, I found an antidepressant that helped me not have bouts of suicidal thoughts, though I was still exhausted and hopeless. I had now developed severe dizziness on top of the weight gain and lethargy and was spending most days in bed.

I would emphasise that at no time did I disagree with the doctor’s assessment that the weight gain was my own fault - I thought that I was being lazy and obviously eating too much.

My parents and friends (with the exception of my girlfriend) were also concerned about my weight and thought that I should exercise more. With the dizziness and extreme fatigue, this was impossible, and by early September 1999 I weighed 135kg (a BMI of 47.5). The doctor thought I might have Chronic Fatigue Syndrome, but at this point, she became concerned with my dizziness and sent me to an audiologist to have my middle and inner ears checked. The audiologist checked my hearing and performed a few basic tests, then was so concerned about my dizziness that he sent me for a test to see if I had a brain tumour. This test was negative, and the audiologist performed more balance tests - in the process, he put his hand under my ear, his thumb touching my throat, and noticed that I had a swelling on my thyroid.

The audiologist - the only health professional not focused on my weight - was the only one to notice that I had a 4cm palpable growth on my thyroid.

Back to the doctor for a thyroid hormone test - the results came back as abnormally low. Low thyroid hormone produces fatigue and weight gain. She then sent me to have an ultrasound, which revealed the growth, and I was referred to a thyroid specialist. This specialist did not focus on my weight, but was very professional and helpful - I had further tests, including a nuclear medicine scan and several biopsies, all of which were inconclusive. On December 30th, 1999, now weighing 145kg, the left half of my thyroid was removed. It turned out to be a malignancy, which had grown a full centimetre in the 12 weeks since the first scan. Fortunately, further scans and biopsies showed that the malignancy had not spread beyond the left half of my thyroid, so I did not have to have radiation therapy.

The specialist told me that if my treatment had been delayed another five weeks, the tumour would have expanded past the thyroid, and from there it is a lot more difficult to treat.

It’s taken me a long time to recover from the anger and suspicion of this treatment, and I moved to a new town with my girlfriend and saw new doctors who had no problems with my weight - they were focused on my health, instead, which was a pleasant surprise. I still have to have blood tests, thyroid palpation, X-rays and ultrasounds at regular intervals to make sure that the cancer hasn’t returned, and it’s taken years to get my thyroid medication right, but I am again in good health. I’m still on anti-depressants, though, and now have no contact with the friends that were pleased to find out that I wasn’t just fat, I had a “real disease”, and am still angry at my parents for thinking that my weight gain was a fault of mine, rather than supporting and helping me when I was seriously ill.

I was reminded of all the grave medical errors committed in the name of fat prejudice upon reading this story, “Who foots the bill for medical mistakes?“

Spurred by federal and industry moves to cut payments for avoidable mistakes, hospitals across the country have joined a growing movement not to charge patients or their insurers for serious, preventable errors.

Since last fall, hospitals in 10 states have agreed to waive fees for certain rare errors dubbed “never events” because safety experts say they should never happen at all.

Still, that leaves 40 states — including Iowa — where patients can expect that they, or their insurance providers, still may be billed for errors that one association leader called “no-brainers.”

The National Quality Forum has identified 28 such events, and while its highly unlikely that fat-based discrimination is among them, as the reader-submitted horror stories on this site reveal, it ought be.

I’m specifically thinking of patients like Emily, whose doctor told her she needed to just “shut her mouth every once in a while” when in actuality, she had either PCOS or a tumor on one of her glands.

Or people like Katydid, whose eating disorder became so serious she vomited blood, but because of her weight, was encouraged to lose even more weight and to try Weight Watchers - the bloody vomit issue was never addressed.

I also think of people like Kate, whose doctor dismissed her excruciating abdominal pain and said it would be magically cured by weight loss. It’s a good thing Kate sought out a second opinion, because as it turns out, she had a potentially cancerous tumor which, because of the time lapse caused by the original doctor’s incompetence, required the removal of one of her ovaries and fallopian tube.

And there’s Christina, who went to the emergency room for appendicitis, and was advised to try Weight Watchers.

I could go on and on but you get the idea. In each case, all women were billed for medical “care” that was anything but responsible, competent and ethical care. In fact, they have a word for the type of care these women received: malpractice.

Health care is a service industry; if we do not get the service we ask for and require, we should not be expected to foot the bill.

Emily writes…

I went to the doctor because I had gained 70 lbs in a year (without changing my diet or activity level) and had stopped having my period.  I’m currently 5′ 7”  220lbs.  At the time, I weighed about 240.  I had always been curvy, but had never had belly fat or lots of flab.  I made an appointment with my sister’s gynecologist to see if we could get to the root of these problems.  I wasn’t very nervous about the visit because my sister (a svelte 5′ 7” 150) raved about this doctor, saying she’s the best doctor she’s ever had and how she really helped when my sister had ovarian cysts and other female problems.

I walked in and the nurse took my vitals.  I changed into the paper robe and blanket and waited my turn. When the doctor walked in, she could’ve been a replica of my sister with a different face.  She took one look at me and asked me what the problem was.  When I told her that I hadn’t had a period in three months and that there was no possible way I could be pregnant, she immediately came back with “It’s because you’re overweight.”

She then told me to “shut my mouth once in a while” and to lay off the junk food (I never snack and can’t stand potato chips and pretzels.  If I do need something, I go for unbuttered popcorn or an apple).  She methodically did my exam, only complimenting me once on the tattoo I have of my alma mater’s insignia…turns out she is also an alum of my school.

At the end of the exam, she reiterated that I needed to stop eating so much and lose some weight.  I had to tell her a few more times that I had gained so much weight in a year without any change to diet or lifestyle before she really understood.  She grumpily agreed to run some blood tests to check for diabetes, thyroid problems and hormone levels.  I fasted and went to have my blood drawn.

When she called me back with the results, it was like I was a different patient and she was a different doctor.  It turns out that my recent weight gain and lack of menstruation was caused either by Polycystic Ovarian Syndrome or a tumor on one of my glands.  She referred me to the best endocrinologist in the area and apologized for having to deal with either illness, though she never apologized for how she treated me in her office.

Thankfully, [the endocrinologist] diagnosed that it wasn’t a tumor and that it wasn’t Cushings and we proceeded with the treatment for PCOS.  I lost about 40lbs in the first year of treatment.   My body basically needed hormone shock therapy to get itself back on track.  I have since had regular periods on and off the pill and feel a lot better.

Deb Esty, Assistant Professor of Psychology at Baldwin-Wallace College, is conducting an anonymous online survey on discrimination related to weight and health.

The purpose of this study is to devise a measure of weight discrimination experiences, and it is our hope that we will be able to have over 500 people participate. If the measure if validated, it could be used in a similar manner to other measures of discrimination experiences, such as examining the relation of such experiences to physical and mental health.

If you’re interested in participating, the online survey can be found here.

For more information, call Dr. Esty at (440) 826-2094 or email her at desty@bw.edu.

Many of you may be familiar with Sally Squires’ Lean Plate Club at the Washington Post. Squire describes the community as a “virtual” club - not a diet - with the primary focus of promoting healthy eating and increased fitness. The expectation, of course, is still that weight loss will naturally follow.

In a column reprinted today in The Oregonian, Squires recounts meeting a physician at a conference who expressed great anger at a patient who had lost 18 pounds only to regain the weight. His story inspired Squires to ask readers via her e-mail newsletter for their opinions on how doctors ought to approach weight loss with their patients. Some of the submissions are worth reprinting here:

Lean Plate Club member from South Portland, Maine, commenting in the chat about the doctor who lost his temper, said this was “exactly why so many overweight people avoid going to their physicians. Doesn’t this doctor realize that most people regain the weight they lose? They need support, not recriminations. The doctor’s temper tantrum didn’t do anything except make him feel better. He wasn’t helping his patient at all. Shame on him.”

“I dread seeing my primary-care physician because I have heart disease and I am 60 pounds overweight,” wrote a Fairfax, Va., member. “Every visit is about how I must lose weight or else I will have a heart attack or stroke. I lost 25 pounds in one year only to quickly gain almost all of it back. I am now trying to quickly lose it again before I must visit my doctor and have him find out that I have regained instead of losing more weight.”

“Very few people respond well to being yelled at or scolded,” a Lean Plate Club member from Pasadena, Calif., noted. “They also do not respond well to being demeaned or put down. Providers also need to remember that the patients’ behavior is not a reflection on them and that it isn’t personal. Lastly, providers need to, at all times, stay professional with their patients.”

And my personal favorite:

“My aunt’s doctor told her to lose 25 pounds, and she informed him that he needed to lose at least 50. Neither has lost weight, and now he doesn’t mention her weight, which is not a favorable medical practice for an internist dealing with older patients. So, docs, get skinny and talk about the weight.”

How do you feel doctors should approach issues of weight with patients? Should weight even be an issue? What are your thoughts?

Katydid writes…

Two years ago, I landed myself in the ER at around 2 AM. I’d been puking my guts up multiple times per day, every day, for months—binges, meals, mere snacks all found themselves subject to the perverse First Law of Bulimia: what goes down must come up. The night of my ER trip, as I paid homage to the porcelain goddess yet again, I found that along with my stomach contents, the toilet was filled with blood.

The doc in the ER was compassionate and thorough, if somewhat clueless about eating disorders. Aside from being somewhat anemic and dehydrated, all my tests were clear, and as I coincidentally already had an appointment with a new internist in the morning the doc apprised my internist’s office of my situation and released me.

Three hours later (approximately one of which was spent sleeping) I made my way into my new doc’s office. I explained that recently I had lost about a bunch of weight starving and puking nonstop and that now I was restricting much less but still bingeing and throwing up constantly; I told her that I’d had an active eating disorder for about four-five years and I filled in the details of the previous night’s ER episode. She asked about my highest and lowest weights—despite several times losing dramatic amounts of weight quickly and unhealthily, I’ve never been “thin,” and when I told her my highest weight, she said it was “great” that I’d lost the weight, even though I told her I’d only lost it restricting and purging.

Then she put me on the scale. I told her I didn’t want to know my weight, and that she at least respected, but then I got off and she said to me, “well, you’re overweight, but I’m sure you knew that. What are you, like five-two?” (I’m five-four, but telling her that didn’t seem to give her pause at all though it would most definitely change the point at which “overweight” came into play. I’d also now been sitting in her office waiting for about three hours, mainlining water—as per the ER doc’s stern instructions—to the point where I thought my bladder would explode and she decides to weigh me fully clothed including my SHOES and then acts like the number she has is real.)

She goes on to tell me that what she wants to do is put me on a modified Weight Watchers plan and have me come back in a month and weigh me again. (I am 5’4” and 145 pounds—which is 30 pounds less than I weighed six months ago, though I lost the bulk of it in six weeks—and I am so sick with an eating disorder I am barfing up blood and she’s talking about a DIET?!)

I tell her that I’m really not interested as I’m already working with a nutritionist. She then asks me, in a hostile tone, what exactly I want from her; I’m at a loss for words since I figure it’s pretty self-evident that, um, she’s a doctor and I want her to…monitor my health?

She takes my stupefaction as a sign that perhaps I’m looking for an amateur psychologist, as she then asks why I have an eating disorder—“were you raped or abused or something, or is this just kind of a going-off-to-college/growing up thing?”

She did not do a physical exam other than weight and blood pressure; she did not discuss the ER incident. She did not bring up the possibility that, given that I was puking blood, more tests might be necessary, nor did she discuss that though I seemed fine I was fairly anemic and had just barely avoided spending the previous night hooked to IVs. I’m not sure what level of insensitivity or stupidity you have to reach to actually think that the most important thing you can tell a 21 year old with an eating disorder is that she should lose weight. Clearly those few extra pounds I was carrying were FAR more threatening to my health than whatever other damage I was inflicting on my body.

The medical community needs a serious wake-up call: not only can there be health at a range of sizes, there can also be illness at a range of sizes. WEIGHT IS JUST A NUMBER!!!

As you can see, this is First, Do No Harm.

As mentioned in the recent Washington Post article, this site was conceived in the aftermath of three posts I wrote regarding the death of my mother, for the Shapely Prose blog, entitled Fat Hatred Kills.

When I wrote the series, I had no idea what I expected to happen. Mostly, I just wanted to express my anger over my mother’s death, which perhaps could have been prevented with proper medical care, to people who would understand what I was talking about when I said that fat is not a disease.

I was in no way prepared for the onslaught of stories similar to my own that arrived in the comments to those posts. Over and over came the same refrains:

- Fat people whose very real ailments went misdiagnosed and/or mistreated, if they were treated at all, because their doctors were too busy judging their fat bodies to do their jobs

or

- Fat people whose previous experiences with medical professionals had terrorized them so badly that they were afraid to seek medical care, no matter how badly they might truly need it, so that even life-threatening conditions were going untreated, sometimes for years at a time.

Even now, half a year later, I generally wind up in tears whenever I look through those comments.

All I see are the brothers and sisters, mothers and fathers, sons and daughters, aunts, uncles and cousins, friends, neighbors… the men and women who are needlessly suffering and sometimes dying, all because there are some doctors out there who believe that some of their patients deserve proper treatment, and some of their patients deserve lectures, scorn and occasionally open loathing.

Is it any wonder then, that many fat patients would literally rather die, than risk going to see a doctor when they are sick?

The other thing we saw, over and over, was that so many victims of medical professional harassment thought they were alone. That they were the only ones who had been treated so poorly, and in fact many had been convinced that they deserved no better.

I spent much of July 12, 2007 weeping. For myself, for my mom, and for all the people like us - people suffering, people dying, families torn apart.

And when at last I dried my tears, I emailed Kate and said, “We have to do something.”

First, Do No Harm is that something.

As long as fat prejudice remains hidden, it flourishes. So we have created a place where men and women can share their stories, to bring the ugly truth of fat hatred to light. Here we seek to provide resources, so those who have been harassed by a medical professional can learn how and where to report these incidents, in the hopes of ensuring that all patients, fat or thin, receive proper medical care when they require it.

So welcome to First, Do No Harm. If you feel you have been mistreated by a health care professional due to the size of your body, you can find resources on how to lodge a complaint here. And if you have a story you’d like to share, please feel free to email us at fathealth at gmail dot com.

Barbara Benesch-Granberg (aka Thorn)

Lynne writes…

A few years ago I went to see my primary care physician because I was having some issues vomiting.  By which I mean that I was vomiting, several times a day.  This would happen usually after eating (immediately afterward) though often at other times.  I experienced no nausea, just a need to vomit.  A lot.  It happened when I ate, drank water, coughed, cried, had a stuffy nose, even once when I smelled a foul smell.  Sudden onset vomit.  It was gross, and it was affecting my life in a big way.  People assumed I had an eating disorder, only I didn’t lose much weight.

I was having a routine physical with my PCP and mentioned what had been happening.  Note: I am 5′6″, 250lbs.  I had met with this doctor on only one occasion before (also a disaster, but non-weight related).  I described my symptoms and without asking any questions or running any tests, she casually said, “Well, maybe you should stop eating such big meals.”  I was a little shocked, but reminded her that the vomiting was frequently non-food related, and therefore could not be caused just by eating big meals, and besides, I wasn’t eating “big meals”.  She responded with “I really think you should just stop eating such big meals” and sent me home.

Later, another doctor who asked a few questions diagnosed me with severe GERD, a form of acid reflux, and we were able to treat it completely.  And I didn’t have to change the size of my meals.