Showing posts with label Turkey Awards. Show all posts
Showing posts with label Turkey Awards. Show all posts

Tuesday, July 31, 2018

9th Turkey Awards: Obesity Eugenics Media Campaigns


A fairly recent article in an Australian newspaper ─ October 2016 ─ had the inflammatory headline, "Call to stop obese women from having babies." The picture below it featured a woman with a slight double chin and said, "Experts warn obese women should not have children."

Well, here we go again with the Obesity Eugenics Wars. This incredibly discriminatory movement is the winner of not one but two Turkey Awards. It's time to call these egregious practices out.

If you aren't familiar with them, the Turkey Awards are the "prizes" I hand out to highlight fat-phobic treatment of people of size from care providers, biased attitudes or studies from researchers, or troubling trends in the care of fat pregnant women these days.

In past years of the Turkey Awards, we've talked about:
I haven't done a Turkey Award in quite a while, so I'm doing two years in a row now. To make it easier to read, I'm splitting one giant post up into two. Today's post is about attention to the Obesity Eugenics Media Campaign and its impact on women. In the future, we will highlight the egregious lack of access to fertility treatment for high BMI women and how this plays into Obesity Eugenics.

Obesity Eugenics: The Media Campaign

Headline from 2016 Australian news article

There has been a concerted public health campaign in recent years to vilify fat pregnant women, scare them away from pregnancy via risk hyperbole, and present only negative stories about fat pregnancy in the media.

This is because many doctors seem to believe that fat people have no business having children. Here's a recent comment from one OB:
Obese women shouldn't even get pregnant. 
This is a common opinion among some healthcare providers. While having a miscarriage, one women of size was scolded for being upset. She was told:
Why are you crying? It’s not like you lost anything. A woman your size has no business being pregnant anyway.
The caption under the picture for the above news headline is
Experts warn obese women should not have children. 
Although these experts justify their actions by saying it's for the sake of the children to get around criticism, that's baloney. This is nothing more than weight bias, pure and simple, combined with the arrogant belief that doctors should be the gatekeepers to who is allowed to reproduce. 

And that is completely unacceptable.

Objective Reporting?

Article from the New York Times, 2015
There have been a series of media articles in recent years designed to discourage obese women from having children unless they reach a "normal" BMI first. These articles have hardly been objective. They use scary headlines, cite worst-case scenarios, use emotionally manipulative language, and rarely represent any other point of view.

Because of our society's dogged belief that obesity is all about willful sloth and gluttony, communication about pregnancy in people of size has taken on an ominous moral overtone. The implication is that if the mother would only show a little self control, she could stop irresponsibly putting her baby at risk. Some imply that obesity during pregnancy is equivalent to child abuse.

Some articles portray fat mothers as despicable food addicts, akin to drug addicts and alcoholics, endangering their babies with their addiction. In the U.K., National Health Services health chief Jonathan Sher recommended in 2016 that certain women should be advised not to have children:
He wrote that “health professionals, pharmacists and community workers” should all take part in giving the advice to these groups of women, who include the obese, drug addicts, domestic violence victims, and women who suffer from depression.
Lovely. So now fat people are looked at the same as drug addicts? A 2015 article trumpets that it's time to "make obesity the new pregnancy taboo."

Well, we are certainly well on our way towards doing that. Look at the titles of a number of recent articles or books about obesity and pregnancy.
These are not the titles of objective pieces. These articles don't just raise awareness about risks. These articles have an obvious overt agenda, and that is to strongly discourage fat women from having children at all.

These articles are not meant to inform, but rather to scare, shame, and intimidate women of size. They're meant to promote a climate of hostility towards high BMI women among healthcare providers and society in general. It's meant to paint people of size as irresponsible and out of control. It's fat-shaming and scare-mongering, pure and simple.

Often, these articles feature an apocryphal story of an obese woman with severe complications as a cautionary tale. This is often a woman of color, accelerating the stigma even further. These stories imply that fat women are all at equal risk for such a dire outcome, and that anyone who dares to be Pregnant While Fat is the ultimate Bad Mother. Or as one blogger puts it, "fat is the new crack" in bad-mother blaming.

Anyone reading these articles might well conclude that virtually no fat woman has EVER had a healthy pregnancy or a healthy baby, that the ONLY way to have a healthy pregnancy is to lose vast quantities of weight first, and that the vast majority of fat women experience MAJOR complications and bear only deformed or doomed babies. And that simply doesn't jibe with the experiences of most fat mothers.

Exaggerated Scare Tactics

Article from The Spectator, 2017
One of the main ways the media and some doctors discourage childbearing in fat women is by using exaggerated scare tactics. We've talked about scare tactic hyperbole before in our 2nd Annual Turkey Awards on Scaremongering and Shaming Tactics. But of course, this tactic is still alive and kicking, as demonstrated in the above articles.

This is where "experts" get to pretend that they only have the best interests of women and children at heart when they publish inflammatory articles like these. It's not weight bias, oh no! After all, pregnancy while obese has risks, right?

The 2017 article article above claims it's not stigma, it's just their concern for you. In other words, it's the medical version of Health Concern Trolling.
Don't call it fat shaming ─ there are good reasons obese women shouldn't get pregnant. Some will say that this is ‘fat shaming’, but it’s just what we do in the medical profession; the identification of risk and its amelioration. We can’t sacrifice the health of mothers and babies on the altar of political correctness.
The article then goes on to recite in scary language how obese women have higher risks for various poor outcomes, without giving any context to those risks, and without acknowledging that only fat people are targeted in this way.

Yes, women of size have increased risks of some outcomes, such as gestational diabetes, blood pressure issues, certain birth defects, and stillbirth. It serves no one to pretend otherwise, and I believe firmly that women of size should understand the potential risks. I write about these potential risks so that women of size can come from an educated and empowered point of view, and decide for themselves what to do about them.

However, it is important to have context to any discussion of risk. 

For example, a recent 2015 article is a meta-analysis of the risks of obesity and pregnancy. Again, as so many of these scare tactic articles do, it distorts risks by using relative risk ratios without any actual numerical risks. This makes the risks sound far more grave and life-threatening than they are.

For example, past research has suggested that obese women have an increased risk for certain birth defects such as Neural Tube Defects (NTDs). Scare-mongering articles always highlight the birth defects risk in particular in media campaigns because it holds so much emotional resonance. Fat women are giving birth to deformed babies! If they weren't so selfish, these birth defects could be prevented!

It's true that obese women have an increased risk for NTDs; some studies have found 2-4 times the risk for Neural Tube Defects (NTDs) in obese and very  obese women. Sounds scary, doesn't it? Yet rarely do the articles mention that double or even quadruple a very small risk (about 1-2 per thousand) is still a very small risk. Do the math. Even if there is an increased risk, less than 1% of obese women will probably have a baby with a NTD.

Expressing it in relative risk (Two times the risk! Four times the risk!) makes it sound scarier and provides a juicier sound bite for the media. But what high BMI people really need to know is what the absolute numerical risk is and what they can do to lower their risk for a NTD. [Answer: To lower the risk for NTDs be sure your blood sugar is normal before pregnancy, stays normal during pregnancy, and possibly take a higher dose of folic acid before and during early pregnancy.]

Gestational diabetes (GD) is another risk that is frequently mentioned in these articles. The risk for GD is about 3-5% among the general population, but it increases to around 15% or so in high BMI women. This is definitely a substantial increase and a potential cause for concern because it may lead to other complications.

However, reverse the statistics and you realize that about 85% of high BMI women do NOT get gestational diabetes. The risk is definitely increased but it is hardly overwhelming. Do you come away from articles on obesity and pregnancy with the impression that more than three-fourths of very fat women will NOT be diagnosed with gestational diabetes? Nor do most articles point out that even if someone develops GD, it is a very manageable condition. Most people with GD are able to control it and have healthy babies.

Yes, women of size are at increased risk for some complications, but being at increased risk does not mean that complications will happen. Many women of size have healthy pregnancies and healthy babies, a fact conveniently ignored by these media articles. They only feature stories of scary complications in order to frighten people of size out of considering pregnancy. You don't scare people away from pregnancy with stories of normal pregnancies and good outcomes.

Nor should facing potential risk disqualify you from motherhood. All kinds of women are at increased risk for complications due to various factors (age, family history, racial or ethnic status, various health conditions) but are rarely told that they have "no business being pregnant." Their risk status is acknowledged and counseling toward risk mitigation is given. The same can be done for women of size.

In dealing with women with risk factors, the focus should be on helping them have the healthiest pregnancy possible, while acknowledging possible complications ─ not trying to keep them from ever having a baby.

It's deeming people with some types of risk factors (like type 1 diabetes) as worthy of having babies despite the risks, and people with other types of risk factors (obesity) as unworthy of having babies. This suggests a bias and stigma, a real implication of a eugenics agenda, even if it is an unconscious one.

Many caregivers recognize that plenty of people of size will have perfectly fine pregnancies and healthy babies despite their size. They also know that in those who do experience complications, the emphasis should be on kind and empathetic care in helping that person towards the best possible outcome, not on scolding and judgment. Even complicated pregnancies can often have good outcomes with supportive care.

It is NOT an irresponsible act to have a baby at a larger size. Yet many of these alarmist articles imply that it is. It's NOT up to doctors to decide which patients with which risk factors should procreate. Rather, it is up to the couple to look at their particular risks and make an informed decision about having children or not. 

 Reasonable risk counseling is appropriate, medical bullying through risk hyperbole is not.

It's not that we cannot discuss possible risks. Of course we can; that's an important part of the healthcare conversation. However, public health discussions about weight have gone from discussing possible risks, to making sweeping generalizations and exaggerations of risk in the public's mind, to scapegoating, scaremongering, and suspension of basic rights by healthcare professionals.

What these experts fail to realize is that weight stigma in public health campaigns often backfires and leads to worse outcomes, not better ones. Stigma affects health negatively. Increasing stigma for people of size does not improve outcomes.

When media coverage quotes "experts" who criticize women of size in inflammatory language for even considering pregnancy at a larger size, when it refuses to acknowledge that many women of size DO have healthy pregnancies and babies at higher weights, when it distorts risk, when it makes sweeping behavioral generalizations, and when it attempts to keep plus-size people from procreation through guilt and dire predictions, that IS indeed fat shaming.

Just Lose Weight First?

Headline from 2012 article in The Mirror
Some doctors are very supportive of people of size, but others are uncompromising and rigid about weight. They believe that no one should get pregnant unless they are at a "normal" BMI. From a 2017 article from the U.K.:
It is imperative that women should be discouraged from trying to get pregnant until they have attended to any excess weight.
These doctors just don't get it. Being fat and wanting children poses a difficult set of choices, and that it's not always as simple as "eat better and exercise and you'll magically lose weight and be healthy enough for a pregnancy."

Getting to so-called "ideal" weight is simply not a realistic goal for most fat people before pregnancy. Even when eating well and exercising regularly, many people of size stay fat. Even the fall-back stance of "lose just 5-10% of your weight" can have negative outcomes in real life too, as it often triggers a rebound to a weight greater than the starting point.

Doctors want simple answers, but there are none. The fact is that nearly all fat people have tried repeatedly to lose weight, and rarely is it lost permanently. Frankly, if there really were an easy, foolproof way to lose weight permanently, we'd all be skinny. It's NOT just a matter of willpower, and research shows that long-term weight loss is very unlikely.

Most fat people have lost weight time after time, only to see it come back over time. Many of us end up fatter after a weight loss attempt than before we began it. In fact, for many of us, yo-yo dieting is what actually put us in the "morbidly obese" category in the first place. For others, strong genetic and hormonal factors may be at work, making reaching that "ideal" weight statistically extremely unlikely.

When faced with people like this, doctors often suggest bariatric surgery. Weight loss surgery does reduce BMI, but research shows significant trade-offs. There are reduced risks for gestational diabetes and large babies, but also increased risks of prematurity, too-small babies, and possibly neonatal mortality. Nutrient deficits are common and there is an increased risk for intestinal hernias; pregnancies after bariatric surgery must be monitored closely. There are no easy answers here.

Many people stop weight loss attempts because they recognize that all the yoyo-ing is hurting their health far more than it is helping it. When they do this, they are not "giving up" or "letting themselves go" but instead focusing on healthy habits instead of weight loss as a measure of health. These habits often do not lead to significant weight loss, but people are still healthier by simply emphasizing good habits and weight stability.  This approach is called "Health At Every Size" (HAES).

For some, the decision to have a pregnancy at a larger size is one chosen once we recognize that long-term weight loss is not likely to happen and if we wait to reach that "ideal" weight range, we may never have a baby.

Don't think that experts don't realize that. They do. Either they are deliberately deluding themselves about the long-term success of weight loss, or they are subtly trying to take fat people out of the reproductive pool.

Another factor to consider is that dieting before pregnancy may deplete the body's stores of vital nutrients (particularly iron), just at the time they are needed most. Many "morbidly obese" people have significant micronutrient deficiencies already; repeated dieting may be part of that. Some consciously choose not to restrict intake or undergo malabsorptive surgeries before deciding to have a baby because of this concern. We do this out of love, not out of selfishness.

Some people of size do choose to try and lose some weight before pregnancy; not necessarily down to "ideal weight" but at least a little bit in hopes of lowering risks. Everyone is an adult and gets to make their own choices. There is some research that it might improve some outcomes modestly. But is that the effect of actual weight loss or an effect of a change in habits?

On the other hand, weight loss before pregnancy can also backfire, even modest amounts. Many of these women find that once pregnant, the body rebounds with a vengeance, gaining far more weight than "should" be gained in pregnancy as the body tries to store fat for the starvation period it thinks it is in. And gaining a great deal of weight in pregnancy is not ideal for anyone, mother or baby.

There is also some research that suggests that dieting behaviors or weight loss product use just before or around the time of conception increases the risk for birth defects. So while losing even "just a few pounds" before pregnancy may seem prudent, it could have unforeseen consequences too.

The bottom line is that there are no simple solutions. The best thing a person of size can do is to focus on improving health habits before pregnancy. This doesn't have to center on weight loss. For example, regular exercise is one of the most powerful things people of all sizes can do to improve their health before pregnancy. Checking that you have normal blood sugar and blood pressure before conceiving is a very important way to improve outcomes. Starting a prenatal vitamin and extra folic acid before conception is also a good idea. Emphasizing good nutrition can also be helpful, regardless of whether it results in weight loss.

Some people of size choose not to wait till we are "ideal weight" before having kids because we know that there are risks to getting older too. Age decreases fertility and increases some pregnancy risks. We may decide that it's better to act sooner than later. 

Some of us believe that having a child at our present weight makes more sense than putting off pregnancy for years in an effort to lose weight. It's better than gambling on losing weight and then trying to keep the resultant pregnancy weight gain to "acceptable" levels, or to start out a pregnancy nutritionally-compromised from recent weight loss attempts or bariatric surgery.

Having a child at a higher weight does not mean we are ignorant about nutrition and exercise, that we are recklessly exposing children to potential risk because we are too lazy or stupid to "eat right." Many of us have very normal eating habits and do not fit the stereotypes of junk food, overconsumption, and gluttony.

Ultimately, the final choice about whether or not to lose weight before pregnancy is up to each individual. Some may decide to, and that's their choice. However, choosing not to lose weight first doesn't mean we are ignorant, uncaring, or unhealthy. Instead, for many of us, it may represent what we think is our best chance for a healthy pregnancy and baby. This is not an act of selfishness but an act of love, hard as that may be for some critics to understand.

Researchers need to STOP trying to scare and shame fat women out of reproducing and pretending that they only have the noblest of intentions at heart. They need to STOP implying that fat women are irresponsible for considering reproducing, or that the only safe way for a fat woman to have a baby is if she loses weight first. The fact is that many fat women have healthy pregnancies and babies without losing weight. Experts need to study those women and see what can be learned from them.

Intersectional Stigma

Headline from The New York Times, 2010
These media articles don't just stigmatize fatness; they often reflect other societal stigmas. This is intersectional eugenics, where women of color who are also women of size or disabled in some way are being stigmatized even more.

In the New York Times article above, the cautionary apocryphal story about obesity in pregnancy is a woman of color. Of course, it's an extreme story. The woman, in her 30s, was already diabetic with kidney issues when she became pregnant. She gained a lot of weight in pregnancy, had a stroke, and her baby was born prematurely. She is pictured mournfully sitting by her extremely small son, touching his tiny feet, in the Neonatal Intensive Care Unit (NICU), and looking regretful.

Imagine what happens when people with multiple marginalized social identities present for pregnancy care. Stigma increases even more. And it's no mistake that people with multiple stigmas are used as the "bad examples" in media articles, especially in the U.S. It's an unconscious desire to increase the "othering" of people of size in the minds of the public.

Weight stigma in pregnancy is already considerable. Caregivers report being repulsed and having less respect for people of size, along with concern on how to deal with fat pregnant women. They often assume that fat people lack "necessary skills, awareness, or motivation to manage their weight." They may view people who have become pregnant at a higher weight as irresponsible. One article notes:
Weight stigma is widespread in healthcare and can lead to anxiety, stress, depression, low self-esteem and negative body image. It can be particularly harmful during pregnancy, when women are at an increased risk of developing mental health issues and their bodies are being scrutinized more than usual. And discussions about things like how extra weight can put the baby at risk can lead to intense feelings of guilt when not handled properly.
Various racial groups, particularly African-Americans, also often experience great stigma in pregnancy. This may help explain why they have a higher risk for some poor outcomes. An excellent 2017 article from National Public Radio (NPR) explored black maternal health in pregnancy and found that blacks had far higher rates of maternal death during and after birth. The NPR article summarized (my emphasis):
According to the CDC, black mothers in the U.S. die at three to four times the rate of white mothers, one of the widest of all racial disparities in women's health...In a national study of five medical complications that are common causes of maternal death and injury, black women were two to three times more likely to die than white women who had the same condition.
According to the NPR article, the difference in maternal mortality between blacks and whites is not attributable to education, socioeconomic status, or access to healthcare. African-American women with every advantage still have poorer outcomes in general. Much of this is due to the stress of long-term exposure to racism and stigma.

What has been surprising recently is the discovery that black women are particularly vulnerable after the birth. More than half of maternal deaths occur postpartum, and people who experienced high blood pressure or cesareans are particularly vulnerable. Black women have higher rates of both blood pressure issues and cesareans. Add in chronic stress from racism and care models that chronically neglect women after birth and you have a recipe for poor outcomes.

The intersection of race and weight leads to even more stigma. The NPR article related the story of a young black Florida mother-to-be whose breathing problems were blamed on obesity when in fact her lungs were filling with fluid and her heart was failing. Getting providers to listen and take your concerns seriously is difficult, especially if you are a person of color and size.

That's why it's even more shameful when articles about the dangers of obesity and pregnancy feature women of color as their bad-mother examples; it multiplies stigma. As Abigail Saguy and Kjerstin Guys of UCLA note, articles that feature a cautionary example of a poor person of color "reinforces social stereotypes of fat people, ethnic minorities, and the poor as out of control and lazy...In the contemporary United States, body size intersects with other dimensions of inequality."

Most researchers and care providers do not consciously wish to stigmatize women of color or women of size. They want to improve outcomes, which is a good goal. But some are tone deaf. They refuse to understand that the public health campaigns they are waging around obesity and pregnancy are far MORE stigmatizing and have begun to venture into the eugenics realm.

Direct Pressure for Sterilization or Termination 

Article from The Daily Mail, 2016
The attempt to limit who can procreate doesn't just stop with scary media campaigns, hyperbole about risk, and pressure to get to a "normal" BMI first. Pressure for sterilization or termination (abortion) is another way that providers try to limit family size in high-BMI women.

We should be clear that most providers don't do this. However, it is real and it has happened. And that is inexcusable.

In the U.K. story behind the above headline, pressure for sterilization was direct and over the top. Her 5th pregnancy was a surprise pregnancy with twins, conceived despite being on birth control (which may be less effective in larger women). She was diagnosed with gestational diabetes during the pregnancy, not an uncommon finding in twin pregnancies. She was told in no uncertain terms that another pregnancy could kill her and that she needed to strongly consider sterilization:
'At 31 weeks pregnant the consultant sat me down and was blunt. Firstly he said the diabetes could cause the girls to grow quite large so I would need a C-section. And then he said another pregnancy would most likely kill me as even if I weren't pregnant, I was at a high risk of becoming a diabetic, ending up in a wheelchair and having a heart attack. As such doctors suggested I should not become pregnant again and I could be sterilised during the C-section.
And indeed, that's what this mother chose to do. The doctor was sufficiently scary in his predictions that she permanently ended her childbearing.

Sometimes the pressure is subtle, as in refusing to remove birth control devices. One Canadian woman recounted the story of her doctor who refused to remove her IUD because he felt it would be a "disaster" for her to become pregnant. Although this is not permanent irreversible sterilization, it is a de facto sterilization.

Other fat women have been pressured to have their tubes tied when they have babies. Gina Marie's story from my website shared the tale of a woman who was pressured for sterilization during labor. This is an ethical violation; ethics guidelines state that women should never be pressured for sterilization when particularly vulnerable, such as during labor. But it happened to Gina Marie anyway.

Her labor was induced early due to fear of a big baby, and not surprisingly, she ended up with a cesarean. The OB was very vocal about how she shouldn't be having children at her size, and pressured her to agree to have her tubes tied during the cesarean. When she would not agree to having her tubes tied, they tried to frighten her by exaggerating the risk of complications during the cesarean and asking her and her partner about her funeral plans during consent for the cesarean. Then they punished her by doing a classical cesarean (a giant incision, up and down, far more risky than a side-to-side incision), blaming it on her obesity, and telling her that her uterus would "explode" if she had any more pregnancies. She never did. In this case they did not succeed in directly sterilizing her but they did succeed in a de facto steriilization.

Although most care providers will not go this far or be this coercive, there is subtle pressure towards sterilization for fat women. We know there is a long and shameful history of forced sterilizations or sterilizations without consent in the United States. This is just the latest version of that, dressed up as "concern" for your health. Eugenics policies were often directed at women of color, poor women, and "disabled" women because medical authorities thought they should not be reproducing.

Although forced sterilization was not systematically applied to fat women across the board, there have certainly been stories of strong pressure for sterilization and even abortion. A number of women have written to me over the years and shared some of their stories. Care providers (or even family members) have implied that it's far too dangerous to be fat and pregnant, that they must terminate the pregnancy in order to save their own lives. Or they imply that the baby is sure to have health problems, birth defects, or be stillborn. Here are a few of the stories:
  • "I also was told I could not have kids. Then when I got pregnant I was told by various doctors for various reasons that I should abort."
  • "[The doctor] even suggested that we consider having an abortion because the likelihood was great that [problems with the baby were] going to happen....We had 2 weeks to decide about the abortion because legally you have up to 24 weeks to abort the baby." 
  • "[The doctor said:] 'No fat woman can ever have a healthy pregnancy. Besides, if you did get pregnant, I'd order you to have an abortion. But that's a moot point anyway, because you're too fat to get pregnant.' "
Another story of a fat person pressured for abortion can be found on the blog, First Do No Harm:
The doctor walked in holding my chart. The first thing she said was, “We all know you don’t want to be here.” ... She continued, “Thirty six years old and a third baby. Hmm. We all know your eggs aren’t any good any more.” [The OB] spoke on and on about why it probably wasn’t a good idea for me to have the baby and that time was running short for me to terminate the pregnancy. I finally held my hand up and said, “I am not terminating the pregnancy. Let’s just move on from there.”
Sometimes the pressure for abortion is not quite as direct. The potential for death for mother or baby is emphasized and the parents are left to fill in the dots as to what their next action should be. Sometimes providers imply that fat women will die if they try to carry a pregnancy to term, that having a baby is committing "suicide by pregnancy."  They hope that the women will be too scared to continue the pregnancy or try to conceive in the first place. Or they imply that the baby is likely to be deformed or die.
  • "I went to see a doctor today...He basically made me feel my baby is a death sentence...In his "honest opinion" I am going to die during labor/delivery or recovery."
  • "I used to go to a really Fat phobic doctor; he was so awful he told me that I couldn't even consider the idea of having another baby or I would die for sure (due to my weight)."
  • "[My doctor] was appalled when she heard I was not on any form of BCP [birth control pills] and said that "at your age and with your size" that either the baby or I would die."
  • "According to him I'm probably going to die of a heart attack sometime during my pregnancy or shortly after."
  • A reproductive endocrinologist refused to help a high BMI woman get pregnant, saying it would be unethical to do so. He says if she did somehow manage to get pregnant, "The baby would only have a 5% chance of survival."
One of the very first stories I heard years ago when I started my website was the woman who was told that she would "die on the table" while giving birth. Others have been told that they would surely have a heart attack during pregnancy or shortly after, or that they were "85% likely to die on the table" during the birth.

Although these doctors didn't directly pressure the women to have an abortion, statements implying that death is practically inevitable for a fat mother or baby are certainly going to be interpreted as pressure to terminate a pregnancy. Here is a story of a woman in the U.K. who was so frightened by the "obesity risk" talk" from her care providers that she was strongly considering termination of the pregnancy.
Please please please, can someone help me. I am 10 weeks pregnant and currently have a BMI of 35...I have had my first midwife appointment today and was told that more than 50 percent of maternal deaths in pregnancy and childbirth are obese mothers and that I will have to have special monitoring and won't be allowed to have a natural birth at the birth centre and will have to be under consultant care and be constantly monitored throughout labour (meaning no water birth, no moving around, no getting into positive positions to birth). 
I am so scared and disappointed, I feel like I am an unfit mother already and feel that the drs think I do not care about the health of my unborn baby. Now I know that this will not go down well with some people but I am considering a termination so that I can lose more weight before carrying a child (I have currently lost 70 pounds).
Here is another similar story. The woman was so scared by all the death talk around obesity and pregnancy that she was considering ending her pregnancy, even though she'd already had one successful pregnancy and healthy baby. She was particularly afraid of the risk for a blood clot (DVT).
I am pg with my 2nd child. With my first I was overweight with a BMI of 37 but had a textbook perfect pregnancy with low blood pressure, blood sugar etc and a small baby, natural birth no issues etc and everything was hunky dory. 
Fast forward 2 years and I have since suffered anxiety and depression, mostly directed towards my health. I have become a hypochondriac which is mental torture some days. I have gained a weight since I had my dd...I am so upset and disgusted with myself , I have beat myself up all day about this. I have done a lot of research the past few days and there's a lot of scary articles about how maternal death and infant death is linked to obesity, how overweight women have a much bigger chance of dying during pregnancy etc, developing DVTs (which is one of my massive hypochondriac fears).
I am terrified I am going to die during this pregnancy because of my weight that I am considering not going ahead with the pregnancy. I am losing sleep and every ache or pain I am worrying about a DVT. It has been mental torture so far and another 8 months of this seems unbearable.
Again, this speaks to the importance of presenting risk realistically. It's true that obesity is a risk factor for DVT, but the actual chances of having a blood clot are pretty small, even in a "morbidly obese" pregnant woman. Many women of similar size (including me) have had pregnancies without blood clots, but these are not the stories being promoted by the media or shared by the doctors.

Furthermore, if she is really worried about a clot, she could speak to her provider about taking a low-dose aspirin prophylactically. Some providers do this regularly with obese women; while no research on its benefit for obese women has been done, it is a choice that can be considered if she is really worried or has a strong family history of clots. She also needs treatment for her anxiety so she can deal with her fears.

Doctors may not intend to be actively promoting eugenics but they cannot overlook what the real-world effects are of discriminatory scare tactics. And shamefully, some are fully aware of these effects and employ them deliberately.

Eugenics Towards People of Size

Headline from Metro.co.uk 2016
How many women of size have had their family size limited, directly or indirectly, through medical bullying? How many people of size have decided not to have children because of the over-the-top public health campaigns against obesity and pregnancy? How many have put off pregnancy until they get to a "normal" BMI, only to find that day never comes? How many have faced pressure for sterilization or de facto sterilization? How many have considered ending their pregnancies because their doctors told them they might die? How many have been pressured to abort a wanted pregnancy because of their size?

There is more than a whiff of eugenics in these latest media campaigns, whether providers mean it to be that way or not. Some researchers have suggested that such stories "hint at so-called soft eugenic practices to keep obese women from reproducing."

From a National Post article from 2016 by Sharon Kirkey:
Canadian researchers say that amid a flurry of press about the dangers of excess fat during pregnancy, overweight and obese women are being made to feel they’re “disgusting” or “bad mothers” for putting their fetuses at risk.... 
Doctors have legitimate reasons to warn women of the complications related to excess maternal weight, they acknowledge. However, much of the obesity “risk talk” is sensationalized, moralizing and shouldn’t position heavy women as “always-already diseased and dangerous to their child,” they write in the latest issue of Social Science & Medicine. Larger women, they argue, can have perfectly healthy, incident-free pregnancies and births. 
“We’re certainly not trying to say that any of the healthcare providers that are referred to in the study is actually a eugenicist,” co-first-author, Andrea Bombak, an assistant professor at Central Michigan University said in an interview. 
“What we’re trying to say is that anytime we refuse care in these areas, or potentially limit people’s care, we could be unintentionally and inadvertently echoing some of these histories that we’ve seen in the past about who is it that society would prefer to reproduce — and who they would prefer to not have reproduce,” she said... 
Many women had positive experiences. But many others also described being made to feel as if they were “disgusting” or unfit to be mothers. 
Bravo to these researchers for calling out the hyperbole and stigma in these media articles and public health campaigns. It's time for others to take up their call.

When obese women are counseled about pregnancy risks with scare tactics and judgment, when newspaper articles use hyperbole to scare high-BMI women away from pregnancy, when obesity in pregnancy is viewed as child abuse or treated as the equivalent of drug addiction, and when women are pressured towards sterilization or termination because of their size ─ then it cannot be denied that these things begin to cross over into the repulsive realm of eugenics. 

Reproductive Policing is WRONG

Article from National Post, 2016, found here
Sadly, some medical professionals would like to prevent ALL fat women from having babies if they could. Remember the media article that states starkly that "Obese women should not have children"? This comes directly from a public health campaign started in the U.K. and endorsed by leading "experts."

Most of the time these days it's considered wrong to question a woman's basic right to motherhood, even in a mother at risk for complications. Yet reproductive policing and shaming does not seem to be equally applied among groups considered at risk for complications. It seems to be focused mostly on obese people, and worse yet, this practice is widely defended in medical circles.

Many doctors want to be the gatekeeper of who gets to procreate and who does not, and many of them particularly want to keep fat women from procreating so they don't pass along their fat genes to the next generation. A 2015 article reveals the real concern about obesity and pregnancy ─ that it will lead to more  fat people:
The kicker of all these consequences is that obesity begets obesity. "Maternal obesity is the most significant factor leading to obesity in offspring and, coupled with excess weight gain in pregnancy, also results in long-term obesity for women," the reviewers write.
Although doctors tell themselves they are just looking out for their patients, the underlying agenda here is about ridding the world of fat people. What better way than to prevent as many fat pregnancies as you can?

Because medical providers have have been taught that obesity only occurs because of sloth and gluttony, many care providers see fat people unworthy of procreating. They use whatever means they can to discourage fat women from having a family. This far exceeds their mandate as physicians, and worse, it smacks of eugenics.

Sorry, but NO ONE has the right to forbid reproduction. The government, medical authorities ─ history has shown time and again that these people should NOT be the gatekeepers of reproduction. Whether to have a baby is a decision for the woman and her partner to make and no one else.

Yes, women of size have higher risks in pregnancy as a group. So do many other groups. Fat people should not be singled out. People of size should be counseled (with compassion, not scare tactics) about their risk status and possible complications, and they should given information about how to mitigate or manage those risks. Whether or not they experience complications, they should be always be treated with dignity, respect, and support.

The ability to reproduce is one of the basic rights of people in society; the state and/or medical caregivers have NO business trying to govern that.

People should never be subject to shaming or scolding for the simple act of wanting to have a family. That principle applies just as much to people of size as to those in any other group.

Thankfully, many care providers are supportive of women of size, but the fact that some resort to extreme tactics to prevent or discourage people of size from reproducing is a terrible stain on the medical profession. This is a unique and insidious form of obesity eugenics and IT MUST STOP.



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Sunday, February 21, 2016

Eighth Annual Turkey Awards: Weight Bias in Lipedema Care

Image by Robert Burton, U.S. Fish and Wildlife Service
It's long past time for our annual Turkey Awards, so let's get this turkey launched! This year is our Eighth Annual Turkey Awards

The Turkey Awards are the "prizes" I hand out to highlight fat-phobic treatment of people of size from care providers, biased attitudes or studies from researchers, or troubling trends in the care of fat pregnant women these days.

In past years, we've talked about:
This year it's time to focus on weight bias in the treatment of lipedema (also spelled lipoedema).

The Lipedema Series

Lipedema is an adipose tissue disorder sometimes known as "painful fat syndrome" or "big leg syndrome." In lipedema, an abnormal accumulation of fat occurs in the legs and lower body (and often arms as well). It tends to worsen around times of hormonal change, as one press release notes:
ATDs [Adipose Tissue Disorders] involve growth and retention of fatty tissue, which often starts at key life shifts in the body’s metabolism, such as puberty, pregnancy or menopause. 
The fat cells in lipedema behave abnormally, growing beyond normal size, pressing onto nearby structures like the lymph system. This causes blood and lymph fluids to leak into the system, affecting joints and lymph circulation. Over time these abnormal fat cells can go from simply causing a pear-shaped body to interfering with mobility and causing secondary lymphedema (also called lipo-lymphedema). This can strongly impact the person's health and quality of life.

Many people of size, especially "morbidly obese" and "super obese" people, have lipedema and don't know it. It explains why some fat people have great difficulty losing weight, even when being very strict with diet and exercise. It also explains why lymphedema issues are more common in very high BMI women.

I ran a major series of posts on lipedema last year. Here is what we have covered so far:
Today, we talk about why this common condition (perhaps affecting up to 11% of women) is so under-diagnosed, and how the care of lipedema is impacted by weight bias in the medical community.

Lack of Medical Awareness

One of the most difficult challenges of lipedema is just getting diagnosed, let alone receiving adequate treatment. As one resource notes:
This frustrating genetic disorder of fatty deposition is not particularly rare, but is rarely diagnosed because clinicians fail to recognize it.
The biggest barrier to diagnosis is that most care providers do not know about lipedema. 

Care providers can't diagnose or treat something they don't know exists. But if this diagnosis has been around for 75 years, why are so many doctors still ignorant about this condition?

It's probably due to a combination of weight bias and practical barriers. Let's talk about these factors. 

Institutional and Personal Weight Bias

It has been estimated by lipedema experts that about 97% of care providers in the U.S. do not know anything about lipedema. How can that be?

One of the most critical questions is why medical schools aren't teaching about this disorder when it's been known about for 75 years.

Sure, lipedema is just one of many conditions that have been discovered in recent years, and medical schools only have so much time to cover many important conditions. That is a real issue. However, the main reason that this condition hasn't made it into most medical school curricula is underlying institutional weight bias.

Generations of doctors have been trained that obesity is always due to overeating and under-exercising, minus a few extremely rare genetic conditions. The medical world is very invested in this world view, both financially and emotionally, and is extremely resistant to even the mere suggestion of any other possibility. As one leading lipedema doctor notes:
People with fat disorders have excess fat, or fatty tissue, on their bodies that cannot be lost by lifestyle changes...It’s pretty difficult for the medical community to accept that fact.
Emotionally, many doctors simply don't want to hear about alternate explanations for obesity. Like the rest of society, they want simple, black-and-white views with easy answers that put the responsibility on the person's behavior. It's far easier to blame the victims than to question everything they've been taught to believe.

And of course, financially many doctors are deeply invested in the obesity treatment industry through connections to companies that specialize in weight-loss plans, pharmaceuticals, and surgeries. This thoroughly compromises their objectivity, consciously or unconsciously.

Some doctors have so much personal weight bias that they continue to deny that this condition exists, even when presented with research about it from prestigious medical journals. They think patients are making up a condition to hide a lack of self-discipline. They believe all our health issues are just from being fat, and that we are simply in denial or making excuses for overindulgence and laziness.

Weight bias is deeply embedded into medical culture. This is a major reason why lipedema has been so neglected as a field of study and as a diagnosis, despite its discovery many years ago. 

Weight bias in the medical field, both institutional and personal, remains one of the most significant barriers to improving the care of people with lipedema.

Practical Barriers

There are also practical barriers to more awareness of lipedema.

One major problem is that lipedema has no ICD (International Classification of Disease) diagnostic code.

If this condition has been known about for seventy-five years, why hasn't a diagnostic code been assigned in all that time?  Not having an ICD code makes it easy for biased caregivers to claim that lipedema is not a "real" condition.

The good news is that lipedema finally has been assigned a MeSH (Medical Subject Heading) search term on PubMed, and you can now search for and find studies on lipedema/lipoedema in the medical literature. In addition, the National Health Service in the U.K. and other medical groups accept it as a real condition. This indicates medical acceptance of lipedema is increasing. 

An ICD code for lipedema is under review, but it still has not been approved yet; weight bias has undoubtedly impeded this process. This is a critical issue, because without an ICD code, it is difficult for caregivers to officially diagnose the condition or to receive compensation for treating it. Insurance routinely denies treatments for people with lipedema, who must then either pay out of pocket or forgo treatment. Getting the ICD code approved is the first and most critical step towards better recognition and treatment of lipedema. 

Another practical barrier is that lipedema doesn't really fall under any particular medical subspecialty. As one recent Canadian article points out, that means that no particular group is promoting awareness of this condition, and very few are researching it or working on adequate treatment:
"No subspecialty has taken it on as something they're going to spearhead," said Dr. Adam Power, a vascular surgeon at London Health Sciences Centre, who sees patients with the condition. "There are few physicians who know about it."
Of the leading lipedema doctors in the world, some are endocrinologists, some are plastic surgeons, some are vascular surgeons, and a few are internists or dermatologists. This makes it difficult for even the lipedema specialists to collaborate, and the lack of centralized information makes it very hard for the average doctor to know how to treat lipedema or make referrals for it.

Although there is no officially-recognized subspecialty on lymphology, doctors who treat lymphedema are among the few that recognize lipedema regularly. However, only people who have developed secondary lipo-lymphedema go see these doctors. This means lipedema is usually only diagnosed in its later stages, once significant damage has been done. This results in fewer treatment options and worse outcomes for patients.

If we are ever going to improve care for people with lipedema, the medical community needs a specialty that will spearhead treatment and research on lipedema and its resulting lymph complications so that lipedema can be caught and treated earlier.

Additionally, we need a centralized, weight-neutral source of information that does not further weight-based stereotypes (see below). Some lipedema resources are in the process of being developed now, but further development is clearly needed. 

Impact On Health Care

Lipedema has a tremendous impact on a woman's health, both due to the condition itself and because of its impact on the quality of healthcare given.

As noted, many women with lipedema go undiagnosed for years. Often, lipedema is not diagnosed until it has progressed to severe levels and major complications have developed.

Yet even among care providers who know about lipedema, patients often receive inadequate or incorrect treatment, leading to complications that may have been avoidable. Even these complications themselves are often mistreated, leading to chronic health issues, disability, and sometimes even life-threatening sequelae. 

All of these situations combine to have a tremendous negative impact on the health of people with lipedema. 

Delayed Diagnosis and Underdiagnosis

As noted, many women with lipedema go for many years before their lipedema is diagnosed, and this delay in diagnosis results in more complications accruing. One German paper notes:
Because of the widespread lack of awareness of the medical condition ‘lipedema’ in the medical profession, this disease is usually first diagnosed when it has reached a very advanced stage, and sequelae have already developed: In half of cases, it is not until ten years after lipedema first develops that the diagnosis is made, and in almost a quarter of cases it is even 30 years or more! Many of the women affected have to endure a living hell until a diagnosis is finally made and they receive help.
Far too often, the diagnosis does not originate with providers because they do not know about this condition. Many women realize they have lipedema via the internet and then bring that information to their care providers, whom they must often educate about lipedema. Despite acceptance of lipedema from many medical societies, they may still be told they are just making excuses for being fat.

Although medical awareness of lipedema and lipolymphedema has increased recently, there is also pushback about this diagnosis from some in the medical community. Another German research article called the diagnosis of lipedema "trendy" and implied that it is being overdiagnosed:
Due to its increased presence in the press and on television, the diagnosis of lipedema is on the way to becoming a trendy diagnosis for those with thick legs. Despite this, one must recognize that lipedema is a very rare disease.
A rare disease? If about 11% of women have lipedema, that is hardly a "very rare" disease.

But some researchers question this estimate of the incidence of lipedema. Because lipedema in its early stages is hard to distinguish from just a pear-shaped body, it's hard to prove whether that 11% figure is accurate or not; some cases really may just be a tendency towards gynecoid deposition of fat.

But clearly, for many people lipedema is far more than just a pear-shaped body. They also have the nodules of abnormal fat tissue under their skin, hypermobility and joint issues, muscle weakness, legs that are painful to the touch, frequent bruising, great difficulty losing weight, and problems with the lymph system. 

Whatever the true incidence is, it seems clear from looking around society that lipedema is not a "very rare" disease, and there are likely far more women going undiagnosed than a rampant overdiagnosis of the condition. Medical resistance is more a result of institutional and personal weight bias than a legitimate concern about a trendy diagnosis. 

Undertreatment of Lipedema

Even when lipedema has been diagnosed, treatment is often inadequate or inappropriate.

Many doctors receive minimal education about the lymph system. Since there is no specialty with centralized expertise in lymph issues or with lipedema, there are very few specialists or experts to consult with about possible treatments. This means that doctors sometimes conclude there is little to be done for lipedema and so prescribe virtually no action. Patients may be told that they have a progressive condition that will inevitably get worse and that there is nothing to be done to treat it, or that treatments are only needed if a severe stage develops. 

While it's true that lipedema cannot be cured at this time, there ARE legitimate treatments for lipedema, and lipedema is not always progressive and life-threatening. No one understands why some people with lipedema progress to severe stages and others do not, but adequate treatment may lessen the chances of it becoming severe or causing secondary complications. 

Unfortunately, even known effective treatments are often not used. Manual Lymph Drainage treatments, compression garments, bandaging, and pneumatic pumps are effective at reducing the severity and progression of lipedema, but frequently are under-utilized because of hassles with insurance companies. 

Compression garments may not be not covered by health insurance. This can be particularly difficult for high-BMI people because these garments often have to be custom-made, which is very expensive. Only people with substantial disposable income are able to afford them out-of-pocket, which means that the poorest people are the ones whose lipedema progresses most severely and have the most complications.

Insurance companies also rarely cover lymph-sparing tumescent liposuction, the one treatment that seems to be the most effective for lipedema. They see liposuction as always cosmetic, even though there is mounting evidence that lymph-sparing liposuction (not normal liposuction) is an effective medical treatment for lipedema, resulting in a remission from the worst of the lipedema. Yet lipedema patients must typically pay many thousands of dollars out of pocket to access it, which puts it out of reach for most. 

Although it requires tenacity, lipedema patients can sometimes win against the insurance companies and get coverage of needed treatments. You can read one woman's story of fighting the insurance company for lipedema treatments here.

However, lack of knowledge about the lymph system, about lipedema treatment, the lack of lipedema specialists, and insurance coverage hassles mean that most lipedema patients are chronically undertreated. 

Mistreatment of Lipedema

While undertreatment is the most common problem with lipedema management, mistreatment can also be a significant problem. Because care providers receive little education about lipedema, some patients are prescribed ineffective or even harmful treatments. 

As we have seen in previous posts, care providers have sometimes prescribed diuretics or traditional cosmetic liposuction out of ignorance, both of which have been shown to worsen lipedema rather than help it.

Similarly, many care providers do not realize that lipedema patients typically need lighter compression garments or may not be able to tolerate compression garments at all because of differences in pain levels between regular lymphedema and lipedema. Similarly, the shape of traditional compression garments for lymphedema patients are often inappropriate for lipedema patients:
Standard size graduated compression stockings are based on the assumption of the legs being tapered from smaller at the ankles to largest at the upper thigh area. For lipoedema or lipo lymphedema sufferers however, the legs can be shaped very differently with bulges, fat pads and indentations in varying locations along the leg. 
In such cases it is very important that strong consideration is given to the shape of the patient’s legs before determining what type of compression garment would work best for them. To be most effective, compression garments can be custom made to accommodate the individual’s irregular leg shape.
Additionally, if lipedema patients develop complications like joint problems, mobility issues, or skin infections, these are often grossly mistreated due to ignorance, bias, or lack of adequate knowledge of optimal treatments for high-BMI people.

For example, underdosing medications is a major problem for people with lipedema. Research shows that many "morbidly obese" patients with cellulitis or erysipelas skin infections are underdosed with antibiotics in the Emergency Room, even in hospitals that specialize in high-BMI patients. Many of these patients likely have untreated lipo-lymphedema (which often results in skin infections), but are given inadequate doses of medications for treating the infection. This sets them up for chronic, worsening infections because the bacteria can mutate to a less-treatable form. 

Sometimes medical maltreatment of lipedema becomes life-threatening. One website tells the story of a woman with lipedema who developed cellulitis. She went to the Emergency Room several times with reddened legs (the "red socks" look), fever, and pain. She was sent home with inadequate care three times. The fourth time, she was admitted but it was too late; the infection had spread and she had become septic. She died the next day.

Lipedema itself is not fatal, but in its severe forms it can lead to mobility issues and secondary infections which can be life-threatening. The story above demonstrates why it is so important for lipedema patients to be proactive about care and INSIST on having their needs met. It also demonstrates why it is so important for care providers to be better educated about proper treatment of people with lipedema.

Unfortunately, usually the only thing most of them focus on is weight loss.

Weight Bias in Lipedema Care

Even when care providers DO recognize lipedema as a legitimate condition and offer treatments known to be effective, weight bias still impacts care.

Even doctors who specialize in lipedema treatment still hold many biased assumptions about lipedema patients' behavior and habits. They often prescribe unproven interventions based on these biased assumptions. Some even refuse care unless patients agree to weight loss or "rigorous weight control."

These care providers mean well. They sincerely want the best for their patients, but have been so indoctrinated with stereotyped assumptions and attitudes that it is difficult for them to see their own biases and how these impact care.

Lipedema specialists must painstakingly and honestly search their own attitudes and treatment recommendations for unconscious weight bias if care for lipedema patients is to improve.

Assumptions About Habits

Before diagnosis, lipedema sufferers are usually assumed to have "eaten themselves" into complications. They are constantly told to eat less and exercise more. When food diaries are presented showing normal intake, care providers accuse patients of lying, of lying to oneself, or of drastically under-estimating their intake. Women with lipedema often spend years and years on ever-stricter diets, achieving only small amounts of weight loss or even gaining weight while dieting and exercising, all while being blamed for being "non-compliant." 

Sadly, getting a lipedema diagnosis may not help that much.

 Even care providers who know about and treat lipedema often have erroneous assumptions about patients' eating habits. One of the main treatises about lipedema says (my emphasis):
Many women describe their frustration as their condition deteriorates, often leading them to overeat and consequently gain weight. Thus it is not surprising that around half the patients end up suffering from obesity in addition to the lipedema.
Another major paper from Germany states:
Weight gain in lipedema is usually not predestined, but fundamentally determined by the general nutritional and exercise behavior. 
Here we see again the assumption that weight gain must ALWAYS be because of overeating ─ even when the patient has a condition that results in the abnormal deposition of fat. 

Many women with lipedema tell stories of a sudden gain in weight despite rigorous diet and exercise routines and no change of habits. Sudden, unexplainable weight gain is an extremely common symptom listed in the histories of countless women with lipedema, yet they are still being blamed for these gains by their lipedema care providers ─ the very people who should understand most.

The German paper cited previously that decries the diagnosis of lipedema as "trendy" goes on to contend that most fat "lipedema" patients are actually only fat, with lipo-hypertrophy (fat overgrowth) instead of real lipedema. It contends that treatment with Manual Lymph Drainage  (MLD) or other lipedema modalities is counter-productive, keeping them from the REAL business of losing weight (read bariatric surgery). The authors state:
Therapy options here are...long-term weight loss and exercise. In high-grade obesity this should be accompanied by medical and psychological support, ideally through an obesity center. Simple diets are not suitable. A long-term change of lifestyle and nutritional behavior is required. In case of morbid obesity surgical interventions such as gastric banding or gastric balloon insertion are often necessary...The physician’s prescription of MLD in this situation carries the risk of lack of action and compliance of the patient with respect to the urgently needed general measures such as weight loss and exercise.
While it's true that not all obese people have lipedema, this is another example of care providers minimizing possible medical explanations of extra weight because they are concerned it will interfere with fat people taking responsibility for their "unhealthy lifestyles" and avoiding drastic measures like bariatric surgery.

Unfortunately, many lipedema sites also promote these outdated stereotypes of fat people. One prominent source of information about lipedema on the internet states (my emphasis):
Medical management involves treating the hormonal disturbance as effectively as possible and providing nutritional guidance to avoid additional weight gain. Many of these individuals have endured years of ridicule because of their physical appearance and become recluses in their homes, further limiting their activity level. As lipedema progresses and the hypersensitivity increases, they feel less inclined to walk or exercise because of the pain. They inevitably gain more weight due to the inactivity and depression, often finding food their only comfort.
Really? Did a major medical site just promote the sweeping generalization that most people with lipedema "find food their only comfort"? Here we go again, assuming that severe presentations of the disease are simply caused by binge eating and emotional problems rather than the disease itself. 

Yes, there are some severe lipo-lymphedema cases who are house-bound emotional recluses with binge eating disorders, like those on certain highly-prejudicial TV shows. Years of dieting can develop into major eating disorders. But it's not true that this scenario applies to all ─ or even most ─ people with lipedema.  

MANY lipedema patients do not have eating disorders, many are extremely strict with their nutritional intakes, and most stay active and maintain a social life despite the challenges of lipedema.

Promoting the stereotype of the huge house-bound emotional recluse only adds to the bias that lipedema patients encounter. To see it promoted in medical resources is deeply disturbing.

Medical care providers have enough weight bias; it's time for online lipedema resources and medical texts to stop propagating such outdated and inaccurate stereotypes.

It is absolutely unconscionable that such stereotypes continue to be promoted within lipedema resources and medical texts. They need to be removed as soon as possible. 

Weight Loss and Diets as Panacea

Most caregivers who are unfamiliar with lipedema emphasize weight loss for treatment. They only see the patient's fatness, so they view the cure as dieting because they've been taught that obesity is due to poor habits. That's unfortunate but to be expected of caregivers who don't understand lipedema.

 What's far more frustrating, however, are the caregivers who specialize in lipedema and lymphedema and who still make weight loss and dietary restrictions a main focus, despite no evidence showing that such interventions are helpful. 

In some practices, such interventions are even a requirement for further care or for treatment, like in some lymphedema practices.

Many lipedema specialists say they only promote dieting so that "non-lipedemic" fat is lost. They admit that dieting is unlikely to bring much loss in the lipedemic areas, but still contend that fatness outside of the hips/legs/arms must only be due to poor lifestyle and can be easily lost.

This assumption needs to be strongly questioned.

Of course lipedema patients need to be careful of lifestyle, but doctors are wrong to assume that fat elsewhere can only be due to poor lifestyle. As lipedema progresses in severity, many patients notice fat gain in supposedly non-lipedemic areas (abdomen, waist, breasts, neck, back), even in the presence of reasonable lifestyle choices. I believe that it will eventually be shown that this too is a by-product of lipedema and associated metabolism issues. In the meantime, these doctors need to listen to lipedema patients when they say that fat in these areas does not always result from poor lifestyle choices.

Lipedema specialists routinely place patients on strict "anti-inflammatory" diets, complete with forbidden foods and "good food/bad food" messages, despite no research showing that an anti-inflammatory diet is helpful. In addition, the fat-shaming language that some lipedema resources use when giving nutritional advice is problematic. Years of dieting mean that many people with lipedema have had brushes with eating-disordered behaviors; fat-shaming language and the push for weight loss in some lipedema resources can make this worse. 

Does this mean that an anti-inflammatory dietary approach can never be suggested? No, it's possible this approach might be helpful for symptom relief but accurate information is key. Patients can be told that some women have anecdotally reported improvement on anti-inflammatory diets, but the approach should not be presented as evidence-based medicine nor the only approach to treatment. Women should be informed that such dietary approaches are experimental and it is unknown whether they are effective.

The same goes for weight loss programs or bariatric surgery. These have not been studied in the context of lipedema and we don't really know what benefits or risks they entail. Since dieting is one of the most potent predictors of weight and fat gain, it could be that continuing to promote weight loss and restrictive intake among lipedema patients is actually only making things worse instead of better. There is no evidence that weight loss results in long-term improvement among lipedema patients; doctors just assume it will. In fact, some people report worse outcomes afterwards. 

Lipedema doctors need to ditch the shame and blame model. Some tell themselves they are fat-friendly and sympathetic but too many are still stuck in the mentality that fat in the "wrong" spot can only be due to lifestyle excesses and spend far too much time pressuring people for weight loss and restrictive nutrition. Patients who decline these interventions are deemed non-compliant and shamed. Some providers even try to force compliance by withholding treatments or access to care.

Lipedema doctors would do far better to promote a Health At Every Size® approach instead. They can emphasize the importance of a healthy lifestyle but without focusing on the scale, dieting practices, or restrictive nutrition as measures of "success" or compliance with treatment.  

Refusal of Care Without Weight Loss

One of the great ethical quandaries of modern medicine is whether there should be weight limitations for healthcare services.

Too often, access to healthcare is tied to weight loss. Fat people are regularly refused knee replacement surgery, organ transplants, and sometimes even pain medications unless they lose weight, have bariatric surgery, or agree to see a weight loss specialist.

Sadly, this refusal of care often extends to lipedema patients. 

Many lymphedema treatment programs see weight loss as an integral part of treatment. Some lymphedema therapists have been known to refuse treatment to "morbidly obese" patients (many of whom have lipedema) who will not agree to weight-management programs of some sort. One program requires patients to commit to:
...maintaining a constant weight or preferably losing weight during the course of treatment...Patients 'contract' for continued care by exhibiting positive behaviors regarding weight loss, attendance at bariatric support groups, Weight Watchers®, or other beneficial practices. 
The authors make it clear that patients are strongly encouraged towards bariatric surgery and conclude:
Based on clinician observation and experience, management of the morbidly obese patient with lymphedema requires that the obesity be addressed in a frank and supportive way. Many morbidly obese patients exhibit a strong element of denial regarding the disease of obesity. Obtaining treatment for obesity is a life-or-death decision but patients often focus more on the treatment of an obesity symptom – ie, edema – than the underlying problem that will shorten their life. Treatment of lymphedema must be linked to the treatment of obesity if long-term success is to be achieved. 
This is the typical response from care providers who have a strong weight bias: 
  • They view the underlying problem as psychological, even when there is evidence of physical disease causing the increased fat
  • They promote weight loss as the main solution, even when weight loss does not usually help lipedemic fat
  • They use access to healthcare as blackmail to force people into weight loss diets or bariatric surgery
Although people with lipedema should always be encouraged to pursue healthy habits to minimize the possibility of further weight gain, weight loss should NEVER be a requirement for healthcare access, nor should patients be subjected to constant harassment if they have declined weight loss interventions.

Care providers need to recognize that unexplained weight gain is a part of the lipedema syndrome, that weight gain may have nothing to do with dietary habits, that some weight gain may be unavoidable, and that for some, weight loss efforts may actually result in worse outcomes in the long run. High-BMI people have the RIGHT to opt out of weight loss programs if they don't want them or feel they would be harmful. 

Treatment for lipedema and lipo-lymphedema should NEVER be contingent on having to agree to weight-loss treatment, bariatric surgery, or special dietary regimes.

 This is respect for basic patient autonomy, yet it's quite telling that violations of this basic right still occurs regularly in the lipedema and lymphedema field. 

Conclusion

 The most difficult challenges of lipedema involve getting diagnosed in the first place, then getting adequate health care and respectful treatment.

 Lipedema is a very real clinical entity, but sadly is nearly unknown among medical professionals in many parts of the world. European doctors have more knowledge and experience with lipedema than doctors elsewhere, but even in Europe women report difficulty in getting diagnosed.

 This means that millions of people around the world are suffering with lipedema but can't even get a diagnosis, let alone adequate treatment for it.

 Weight bias, both on an institutional and individual level, has played a strong role in this. Lipedema has been recognized as a condition for 75 years, yet we still don't have an ICD diagnosis code for it and insurance still largely does not cover its treatment. Until that happens, people with lipedema will continue to be blamed for their weight and for complications that are associated with lipedema.

 Unfortunately, even when caregivers do recognize lipedema, weight bias continues to interfere with its treatment. Some care providers mistakenly believe that there is no effective treatment and so the patient's lipedema worsens without intervention. Others order helpful treatments such as compression garments or lymph-sparing liposuction which insurance companies short-sightedly refuse to pay for.

 Weight bias continues to affect even those who specialize in treating lipedema. Many continue to make negative assumptions about the eating habits and emotional health of people with lipedema, and too many lipedema resources are filled with negative stereotypes. It is time for lipedema specialists to look honestly at their own biases and assumptions, and it is long past time for offensive and harmful stereotypes to be removed from lipedema informational sites.

 Some providers require weight loss in order to access basic treatment, despite the fact that lipedema makes weight loss extremely difficult and rebound gains are common. Lipedema patients should never be pressured into weight loss, bariatric surgery, or particular dietary approaches. These can be offered as an option, but should be not be a requirement for care. Patients always retain the right to autonomy over their medical decisions, including weight loss, surgery, or a particular nutritional approach; if they decline these interventions, they should not be penalized. 

 Nor should weight-loss interventions or special dietary approaches be presented as evidence-based treatment. No studies showing the benefit of these for lipedema patients exist at this time. Care providers need to stop promoting anti-inflammation or paleo diets as the "best" way to avoid lipedema progression; limited anecdotal evidence suggests they might help, but we don't have actual proof of that and patients deserve full disclosure that hard evidence is lacking. 

 Furthermore, true informed consent means that patients need to be presented with information on both the benefits AND the risks of a proposed treatment (i.e., weight loss). Care providers must be honest about the strong evidence that few people manage to lose to a "normal" BMI or keep the weight off for any meaningful length of time, that weight loss has its own risks, that weight loss often leads to weight cycling and greater rebound weights, and that weight cycling also has risks.  

 In conclusion, to improve conditions for people with lipedema the medical profession urgently needs to take the following steps:
  • Expedite and approve an ICD diagnostic code for lipedema
  • Require that medical schools teach about lipedema
  • Identify a medical specialty to spearhead and drive lipedema research
  • Increase funding for lipedema research, especially into potential causes of lipedema
  • Aggressively raise awareness of lipedema among general care providers 
  • Raise awareness of and increase utilization of lipedema treatment options
  • Require that insurance companies cover proven treatments for lipedema, including manual lymph drainage, compression garments, and lymph-sparing liposuction 
  • Initiate an intensive educational campaign about best-practice treatment of secondary infections like erysipelas and cellulitis in people with lipedema and lymphedema 
  • Aggressively investigate and promote awareness of proper dosing of antibiotics and other pharmaceuticals in people of size
  • Intensively promote gold-standard research into potential treatments for lipedema from both "conservative" and "alternative" models
  • Conduct long-term (not short-term) research on weight loss and anti-inflammatory or paleo nutritional approaches for lipedema
  • Continue research on whether lymph-sparing liposuction prevents or delays lipedema progression and severity
  • Eliminate weight-biased assumptions, fat-shaming language, and offensive fat stereotyping in lipedema resources
  • Question assumptions that fat in non-lipedemic areas must be due only to "lifestyle" issues
  • Eliminate biased guidelines that require weight loss or weight loss treatment in order to access medical treatments like lymphedema therapy or lymph-sparing liposuction
Lipedema patients have been underdiagnosed, undertreated, manipulated, mistreated, shamed, and blamed for too many years. It is long past time for some radical change in how lipedema patients are perceived and treated by the medical field.

Weight bias in lipedema treatment is insidious and extremely pervasive. This weight bias is a major barrier to improving care and outcomes for lipedema patients. 

 I believe that most medical professionals are good-hearted people and genuinely want to help lipedema patients, but until they unflinchingly examine the effect of both personal and institutional weight bias on medical care for people with lipedema, progress will only be modest. 


References and Resources

Resources

*Trigger Warning: Many of these sites are not fat-friendly or promote dieting behaviors
Research Articles

J Dtsch Dermatol Ges. 2013 Mar;11(3):225-33. doi: 10.1111/ddg.12024. Epub 2012 Dec 11. Thick legs - not always lipedema. Reich-Schupke S1, Altmeyer P, Stücker M. PMID: 23231593
Due to its increased presence in the press and on television, the diagnosis of lipedema is on the way to becoming a trendy diagnosis for those with thick legs. Despite this, one must recognize that lipedema is a very rare disease....

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