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Tuesday, 31 July 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, 29 July 2018

Fat Suits Aren’t Funny

facepalmInsatiable is the new Netflix show of questionable premise. A fat girl gets punched in the face, which somehow leads to her jaw being wired shut (I’d like to see the stats on how many face punches end in a wired jaw, but I digress).

The jaw wiring leads to her starving herself and losing a bunch of weight (because nobody told her about Ensure or Shake Shack?).

This leads to her become thin (temporarily, based on all the research,) which leads to her getting “revenge.” The character’s “transformation” is achieved by a thin actress wearing and then taking off a fat suit.

As has been said by many fat people in many ways: Fuck. This. Noise. The idea that responding to fatphobia by manipulating our bodies to conform to a stereotype of beauty is “revenge” is terrible on its face, more terrible when you dig deeper, and even if it was a good premise (and OMFG it’s not), it’s been played out already. Seriously — played all the way out.

In response to the massive blowback, Alyssa Milano decided that instead of addressing fat people’s concerns, she should instruct us about how to feel. She took to Twitter…

Read the rest of this piece here!

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Price: $25.00 ($10 for DancesWithFat members)
Click here for all the details and to register!

Book and Dance Class Sale!  I’m on a journey to complete an IRONMAN triathlon, and I’m having a sale on all my books, DVDs, and digital downloads to help pay for it. You get books and dance classes, I get spandex clothes and bike parts. Everybody wins! If you want, you can check it out here!

Book Me!  I’d love to speak to your organization. You can get more information here or just e-mail me at ragen at danceswithfat dot org!

I’m training for an IRONMAN! You can follow my journey at www.IronFat.com or on Instagram.

If you are uncomfortable with my offering things for sale on this site, you are invited to check out this post.



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Saturday, 21 July 2018

Getting My Feet Wet: Journeying from HAES® to Social Justice

by Erin Harrop, MSW

I have had the privilege of being an ASDAH member for several years. I joined ASDAH around the time of the 2015 conference, thrilled to see a Health At Every Size® (HAES®) organization truly endeavoring to be intersectional in their approach to weight stigma. As a social worker, social justice is a core value of my profession, and integrating weight oppression into social justice work has been a key area of my research and clinical practice.

My own learning about social justice has been a long, ongoing, imperfect, bumpy, vulnerable, challenging, illuminating, interesting, rewarding, surprising, and at times, embarrassing, painful, and frustrating process. Learning about the systemic oppressive forces that affect my view of my body from a weight-stigma perspective has been an immensely liberating experience. Acknowledging my privilege has been confusing and exhausting. Confronting my own racism, sexism, classism, homophobia, ableism, and transphobia has been scary, transformative, and deeply important.

One of the most impactful learnings for me at the 2015 conference was Lisa Marie’s clear introduction of Tema Okun’s characteristics of white supremacy culture. Within this work, Okun describes 15 values and beliefs that underlie much of Westernized, white culture, including the following: a sense of urgency, perfectionism, worship of the written word, defensiveness, quantity over quality, paternalism, either/or thinking, power hoarding, fear of open conflict, objectivity, individualism, only one right way, belief in “I’m the only one,” progress is more/bigger, and the right to comfort. While some of these characteristics are not inherently unethical (e.g. sense of urgency), they reflect a certain world view, a certain set of values, and certain cultural norms that are in no way universal, necessarily ethical, or even preferable to other ways of being.

For me, one of the most striking things about this list is how performing many of these characteristics is, in effect, a double-edged sword. For me, adhering to these beliefs both: 1) promotes my success in Western academic and professional environments, and 2) contributes to feelings of decreased mental health, lack of embodiment, and poorer social connections. As a doctoral student, I live most of my waking hours in an academic culture that thrives on many of these characteristics (e.g. worship of the written word, sense of urgency, individualism, perfectionism). As a social worker in an emergency room setting, I frequently live in a world of urgency, objectivity, paternalism, and fear of open conflict. I have learned these languages well; and learning other ways of being is hard—and can be uncomfortable.

One of the most empowering things about Okun’s list is that I can begin to actively acknowledge these values within myself (sometimes for the first time), intentionally try on other ways of being, and then repeatedly practice these new ways. In fact, I can practice these new ways of being until I live into a new normal; I can start to act differently, feel differently, and think differently. Each time I intentionally sit with discomfort, willingly walk into conflict, honor diverse ways of knowing, investigate potential shortcomings before defending my position, or try to see the myriad of grays in between the black and the white, I play a small role in dismantling my own culture of white supremacy that I was born into.

This journey into acknowledging privilege and learning to dismantle oppression has not been a linear, predictable path. In fact, sometimes, the harder I try (take for instance, utilizing more gender neutral and inclusive language), often the more microaggressions I perpetrate. Now that I am more aware of what racism looks like, I can be shocked (and saddened) by my own assumptions and internal reactions—but I can also intercede when I see microaggressions taking place (or perpetrate one myself), and offer a perspective of social justice, however imperfectly. Additionally, because I now sometimes lead trainings on these topics, my mistakes are often amplified by the presence of a microphone, an audience, and sometimes a recording device—to replay my mistakes over and over for all the world to see (or at least the small segment of the world who listens to the podcast, or watches the video). Working through my mistakes helps challenge those parts of me that are fragile and perfectionistic. For me, being committed to social justice and the dismantling of oppression in all its forms—weightism, racism, sexism, heteronormativity, transphobia, ableism, and others—means that I am committed to learning, and committed to learning from the mistakes that I will, inevitably, make.

So, what has all this got to do with ASDAH? From my perspective, quite a bit—but I’ll focus on three areas: 1) ASDAH’s strategic plan, 2) the 2018 ASDAH Conference, and 3) the ASDAH blog.

In 2016 ASDAH launched a new strategic plan, dedicated to becoming a more inclusive social justice organization, which tackles weight oppression from a more intersectional standpoint. According to our website, ASDAH is committed to “understanding, respecting, and working from a platform of intersectionality.” Based on my experience as a board member this past year, ASDAH has been working hard to integrate intersectionality with integrity—and not just for show. Thirty-four ASDAH members attended our organization-wide anti-oppression training in February, and the entire board attended an additional training as well. We have re-examined our membership structure, and expanded our reach and diversity. And our work is still in the nascent stages; we are on a long-term journey.

Our upcoming 2018 conference continues the conversations about weight stigma and intersectionality that we began at the 2015 conference. Tackling topics like this is difficult work—especially in group settings. It challenges how we think about the world, and how we think about ourselves. We will necessarily encounter different opinions and perspectives—and that’s a beautiful thing. This year, we have an amazing line-up of keynote speakers (Shilo George, Gloria Lucas, Linda Bacon, and Substantia Jones), speaking from diverse world experiences. I’m excited to see how we are engaged and challenged as an organization.

Lastly, the ASDAH blog has been on an unplanned, unfortunate, seemingly endless hiatus since July 2017. Last year, after a problematic blog post that endorsed ideas contrary to ASDAH’s mission, many members expressed feelings of concern, betrayal, frustration, and disappointment. Additionally, as a new board, ASDAH leadership, though scrambling behind-the-scenes, was slower to respond and address the concerns. As someone who was so upset by the blog that I personally made a list of “13 points that I thought were problematic” about the piece, and as someone who was simultaneously on the ASDAH board, this was a challenging time. However, this experience resulted in bringing to light many things about the organization, the needs of the membership, and the needs of the times, which leadership continues to address.

I bring this up, because ASDAH has not had a blog post since that “incident.” For some, it was a highly publicized experience, uncomfortable, with diverse opinions, and open conflict. And as an organization, we have shied away from re-approaching our blog. Though we have revised our community guidelines for online communication, and vamped up our blog approval process, we haven’t actually written and published anything! Perhaps, I would venture, we have been afraid of conflict, afraid of making another mistake, striving for “blog perfection,” not wanting to risk discomfort. Sound familiar?

So, I’m writing my first-ever blog post. I’m doing it for you, my beloved ASDAH family, because I believe in our mission, and I want to see us grow as the diverse community that we are. Today’s blog isn’t perfect. It’s woefully incomplete. I’ve repeated the word “intersectionality” far more than I would like. It is, in places, a bit mellow dramatic, I end at least one sentence with a preposition, and it’s currently 54 words over the word limit.

As I take the plunge to be your experienced-in-HAES®-yet-inexperienced-in-blogs ASDAH blog coordinator, I hope that other members will also be willing to submit a blog to help further the ASDAH mission. If you have an idea for a HAES®- or intersectionality-focused piece, we would love to read it! Please feel free to contact me at erinharrop@gmail.com, and let’s walk bravely into this blog world together.

Here’s to bravery, mistakes, and dismantling oppression one baby step at a time!

Erin pic1

 

Erin Harrop, MSW, is a doctoral student in social welfare at the University of Washington and medical social worker. She studies eating disorders in higher weight persons, and leads the student group, SWAG: Sizeism, Weightism Advocacy Group.



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Thursday, 12 July 2018

Health at Every Size and Eating Disorders

IMG_1846[1]

My Best Friend Kelrick got this figurine for me in a little shop in Astoria, Queens. Sadly I don’t know the artist.

A new study from the Department of Psychology at the University of California Los Angeles, tells us what we would already know if we believed fat people who talk about their lived experience. Fat shaming doesn’t have any positive outcomes, but it has plenty of negative ones. In this case, the study found that fat shaming girls, especially by family, does not lead to healthy behaviors but instead can lead to eating disorders.

Oh, look — a big bag full of obvious!

The authors looked at data from a large, long-term study that included 2,036 girls. The girls reported at age 14 if they had been called “too fat” by their parents, siblings, best friends, boys they liked, any other teenagers, or their teachers. At ages 14 and 19, the girls completed an assessment of unhealthy weight control behaviors, body dissatisfaction, tendency toward bulimia, and drive for thinness, as well as reporting if they had engaged in unhealthy behaviors to around their weight. Controlling for variables including body mass index, race, parental income and education, and a girl’s level of disordered eating behaviors at age 14, the girls who had reported being called “too fat” at 14 had higher scores on the eating disorder inventory at age 19. The lead author, psychologist Jeffrey Hunger, told Reuters, “Labeling young girls as ‘too fat’ will never spur positive health behaviors; it is simply going to result in poor body image, unhealthy weight control practices, and disordered eating.”

This is not the first study of its kind…

To read the rest of this piece, click here!

If you value my work, you can support my ability to do more of it with a one-time contribution or by becoming a member.

Like this blog?  Here’s more cool stuff:

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Price: $25.00 ($10 for DancesWithFat members)
Click here for all the details and to register!

Book and Dance Class Sale!  I’m on a journey to complete an IRONMAN triathlon, and I’m having a sale on all my books, DVDs, and digital downloads to help pay for it. You get books and dance classes, I get spandex clothes and bike parts. Everybody wins! If you want, you can check it out here!

Book Me!  I’d love to speak to your organization. You can get more information here or just e-mail me at ragen at danceswithfat dot org!

I’m training for an IRONMAN! You can follow my journey at www.IronFat.com or on Instagram.

If you are uncomfortable with my offering things for sale on this site, you are invited to check out this post.



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Friday, 29 June 2018

Lipedema: My Story


June is Lipedema Awareness Month. In lipedema, a fat storage disorder, an abnormal accumulation of fat develops in the legs and lower body, sometimes extending to the arms and other body parts as well. It is sometimes known as "painful fat syndrome" or "big legs syndrome." Although no one knows its true incidence, it has been estimated to affect up to 11% of women.

To raise awareness about this condition, we have been doing an periodic series about lipedema. Here is what we have covered so far:
Today, I share some of my own story of dealing with lipedema and how it has influenced other health challenges.

My Story

Lipedema Posters from LASS, www.lass.org.au,
Lipoedema Australia Support Society
Like the woman above, I too have lipedema and went undiagnosed for many years, which probably made my lipedema worse. This is why I try to raise awareness of this condition. Far too many people of size have lipedema and aren't aware of it, thus missing out on possible treatments for it. I was one of them.

I only learned about lipedema when I was around 50 ─ but I found out about it from the internet, not from any doctor. I fit the classic profile of lipedema perfectly, with all the symptoms and nearly all the complications of it, but no care provider had EVER mentioned lipedema to me. No care provider had ever once thought to look more deeply into my inability to lose weight long-term or to question whether my abnormally heavy legs might mean something. They just chalked it up to bad habits and tried to pressure me to continue to diet, despite its many past failures.

Once I learned about lipedema, all kinds of light bulbs went off in my head. A-ha! So that's why I had that funny shape! So that's why I gained so much weight as a young adult, despite workng incredibly hard to try and lose weight. So that's why I had all those symptoms!

But even once I learned about lipedema, I didn't do much about it. I didn't think that there were many treatment options, so I didn't really bring it up with my care providers. I was more focused on my PCOS (Polycystic Ovarian Syndrome) and hypothyroidism, both of which seemed more treatable. But while treating those did help my overall health, it didn't address my lipedema.

When I finally did bring up lipedema at the doctor's, I had to educate my provider about it because she had never even HEARD of it. Once she read the articles I gave her, she agreed I definitely fit the classic pattern but was at a loss for what to do about it. It's in my medical record now as a sub-note under "obesity" but because there is no official international diagnostic code for lipedema yet (despite it having been known about since 1940) that's all she can really do. Lack of insurance coverage for lipedema treatment is a major barrier and the first step is an official diagnostic code for it.

I'm in Stage 3 lipedema, with the start of lipo-lymphedema (stage 4). I have the Type III classic "pantaloon" shape of my legs, complete with the shouldered ankles and fat pads by the knees, and the lipedema is now in my abdomen and my upper arms as well. I look at lot like the lady in the poster above, but with more cankles and less knees.

Sadly, my eldest daughter seems to have inherited my lipedema; she had the big gain in early adulthood too and is already Stage 2. I'm worried about what will happen with her in the future. On the other hand, my youngest daughter shows no signs of lipedema at all, so I'm hoping she avoided this genetic minefield. Time will tell as she's just a young teenager now.

In the hope that it will help others with lipedema, here is my lipedema story. I've tried to be detailed in case others find those details helpful.

Childhood

My childhood shape was very much like the pear above, except with thicker thighs. My lower legs and arms were mostly unaffected. That came later.

I am adopted, so I have only limited family medical history available to me. From what little I do know, it doesn't seem like my birth mother had significant lipedema at the time I was born. She did have other medical issues but apparently not lipedema. I would like to know if there was any history of large legs on either side of my biological family but so far have not been able to discover this information.

I was always "chubby" and pear-shaped to some degree as a child, even while eating the same healthy foods as my thin adoptive family. Although I am not athletic, I still rode my bike, played in the woods, swam competitively, took several years of dance and gymnastics, and played football and baseball with the neighborhood boys. While I preferred reading to running, I was a reasonably active kid. My chubbiness had nothing to do with poor eating habits or lack of exercise.

When I took gymnastics, the teacher was quite amazed at how limber I was, especially my back. I was much more limber than the other girls. I was able to do a no-handed back bend and pick up a cup off the floor with my teeth; no one else could. Now I realize that this was probably a sign of hypermobility, something many people with lipedema have. I was not double-jointed, but I was definitely more limber than most by far.

My adoptive mother was always bothered by my weight. She felt it was a negative reflection on her, and people would assume she was feeding me junk food. Being naturally quite thin, she simply didn't understand how I could be chubby, and she was afraid of how it would affect me. She was of the generation where a girl's looks were everything; she was afraid I'd never find a man, which in her worldview was the real measure of a woman's worth.

She wanted to put me on a diet at 5 years old but the doctor wouldn't let her. He just encouraged her to make me be as active as possible, so she was always booting me out the door to play. Didn't make me thin. When I was nine, we moved to a new town and the new doctor agreed to put me on a diet. It was a "healthy" diet, nothing radical, just mildly hypocaloric. I did lose some weight for a little while ─ until it came back, as it usually does. (And not because I slacked off.) So then I dieted again, and again the weight came back. So then we did it again, only this time with a lower calorie count, etc.

Thus began my many years of yo-yo dieting. I dieted off and on (mostly on) from the age of 9. Generally speaking, each diet was more rigorous as I got more and more desperate to lose weight.

Teens

Image by Sarah Bishop
Once I hit puberty at about 13, my weight increased quite a bit. Most of the gain was in my hips and legs; I became even more pear-shaped. I was smaller on top than on the bottom, but I did not have the extreme disproportion that some lipedema women have.

I had great difficulty buying regular pants because my waist was so much smaller than my hips. This is typical of women with lipedema. My mom made many of my clothes for me when I was younger in order to give me elastic waists. It was the only way to get pants that didn't gap hugely at the waist.

I wasn't extremely fat, though I was certainly perceived as fat by those around me. I can remember people staring at or remarking on my legs as a teen. One boy who was interested in me said, "Well, now I can see why you don't wear shorts!" (Nope, he most certainly did not become my boyfriend.)

When I was 13, my adoptive father had a heart attack; heart problems ran strongly in his family. Although we had always eaten healthy, our diet got even more rigid after that. We ate low-fat, semi-vegetarian, and rarely had sugar ─ yet I still gained weight.

So I continued to diet off and on via calorie restriction and carb restriction. My legs remained heavy even when the rest of me lost weight, but frankly I never become a "normal" size no matter what I did, and the weight always came back with extra. 

I started skipping periods occasionally due to PCOS but the PCOS went undiagnosed. Around age 15-16 I did some serious time with Weight Watchers (WW) and did lose a bit of weight, but not not nearly what was expected for the amount of time I was on the program and I never got to a "normal" BMI. Despite the weight loss, I still had a definite pear-shape and my periods stayed irregular.

I remember being treated suspiciously by the Weight Watcher leaders because I wasn't losing "enough" weight; they suspected me of lying about my intake. But I was very strict and carried a scale with me everywhere to weigh my food or carried my own healthy snacks with me when I went out in an effort to strictly control my calories. Still, the weight came back. Weight Watcher weigh-ins became a nightmare. I grew to really loathe weigh-ins because of the judgment I received at them.

I got more and more desperate and began to develop some eating-disordered behaviors ─ nothing major, but still not healthy, mainly trying to manipulate weigh-in results. I eventually quit WW in disgust because I wasn't losing weight anymore despite my most dedicated efforts, and because I was concerned the neurotic food behaviors and attitudes of the people at meetings were encouraging me to become more eating-disordered. Far from being "healthy," it felt like a very unhealthy place to be. I also tried Overeaters Anonymous, but was even more put off by that program because the extreme eating behaviors the other members described did not fit my experience. Again, it felt like a very emotionally unhealthy place to be.

Late Teens and Early 20s



During my senior year of high school, I started gaining weight like crazy ─ all while dieting and getting plenty of exercise, including biking, cross-country skiing, and even climbing a mountain, but none of that made any difference.

The weight gain accelerated in college. I took a Fitness Class in an effort to stem the weight gain. I was jogging, running stairs, biking, swimming, and lifting weights. I remember the coach criticizing my "HUGE legs" (his words, with that amount of emphasis). I gained 25 lbs. in a semester during that Fitness class, despite being on Weight Watchers again and getting tremendous amounts of exercise during the class. I'm pretty sure the coach thought I was binge eating in a closet somewhere but I wasn't. I was simply in the middle of a significant lipedema "flare."

My parents were horrified by my large weight gain. I moved out of the dorm so I could avoid "fattening dorm food" (even though my dorm-mates ate the same food and were skinny). I saw a number of doctors over the years, trying to figure out the weight gain, but found no answers. They noted that my thyroid TSH labs were borderline but because they were still within the "normal" range, they basically just told me to eat less and exercise more.

Although I had always been a healthy eater as a kid, I started developing more unhealthy eating patterns in response to all of this. I began alternating between restrictive diets and overindulging in "unhealthy" foods (though I was never a true binge eater). In desperation, I went back to WW several times during my college years, but found little weight loss and lots of food neurosis. Again, I manipulated for weigh-ins. I was concerned about what I was starting to do but felt such pressure at those weigh-ins. The basic food plan wasn't bad but the attitudes around food and weight in the WW meetings were extremely toxic. I quit to save my own sanity and because I was concerned I was headed for an eating disorder. I saw women around me in college with true eating disorders and how difficult that was. I realized I was headed in that direction if I didn't stop, so I did.

Over the course of several years, despite all the dieting and exercise, I gained about 100 pounds total, most of it in the lower body. I had a terrible time finding clothes to wear; there was no internet then and my college was in a fairly small town. Chain stores and Goodwill had nothing in my size. I lived in men's overalls because that's all I could find to fit.

It was hard to be positive about my body, but I was fortunate to have a boyfriend who loved me as I was. Being away from my mother's well-meaning but neurotic weight focus also helped boost my self-esteem and confidence. I developed a can-do attitude, worked hard for top grades, and didn't let me weight keep me from what I wanted to do.

Still, I was worried what my weight would do to my health. In desperation, eventually I joined a special medical weight loss clinic, following a low-calorie ketogenic diet. I lived on 500 CALORIES A DAY, far below starvation levels, in ketosis, for SIX MONTHS during my senior year of college. (This is slightly lower than the caloric intake of the Dutch famine victims in World War II, for about the same amount of time, and the Dutch famine is considered a severe famine exposure). I lost 50 lbs., but still had fat legs, hips, and arms, and never got remotely close to a "normal" size. By the end of the 6 months, I slowly began gaining weight back ─ while on 500 calories a day.  And I still wasn't thin enough to suit my mother.

That starvation diet was a real wake-up call. I saw how foolish such an extreme approach was and how awful I felt, so I stopped the program. That program made me realize that something else HAD to be going on physiologically and that it wasn't just about my intake and output. I quit blaming myself. I went back to eating normally. It didn't take long before I returned to my original weight plus a little more ─ but with much more abdominal fat than I'd had before. That's when the lipedema really began affecting my abdomen too.

In hindsight, I think I had a "perfect storm" combination of PCOS, hypothyroidism, and lipedema all hit me at once, and this triple-whammy caused the massive weight gain. I had gained about 100 lbs. despite multiple bouts of Weight Watchers, fitness classes, a starvation diet, and a million other things to try to stop the weight gain. Every doctor I consulted told me I just needed to eat less and exercise more; that it was just a matter of adjusting the math of intake vs. output, and having strong willpower. One endocrinologist I went to for thyroid testing told me that I was "just looking for an excuse for being fat."

I knew there had to be more to the story but eventually gave up going to doctors because my concerns weren't taken seriously and I was tired of the weight harassment. I just tried to live a reasonable life and accepted that I would always be fat.

Mid-20s to Early 30s


Eventually my weight stabilized in my mid-20s. I stopped dieting, which helped stop the weight yo-yos and probably also stopped a full-blown eating disorder from developing. Leaving dieting certainly boosted my self-esteem and improved my mental health!

Of course, I still encountered weight bias in my career and in the world. I was "morbidly obese" and people didn't hesitate to let me know it. I had a boss verbally pressure me to lose weight, and it came up in my job performance reviews...but only unofficially, so he didn't get into trouble. Another boss looked for a replacement for me because I wasn't "pretty enough" (code for too fat), as if physical appearance had anything to do with competency in my field. Fortunately I was very skilled and kept the job.

It was frustrating to have all kinds of assumptions made about me based on my size, but I didn't let it hold me back. I got married, achieved in my career, traveled a lot, acted on stage, and participated in many fun activities. I lived my life and was happy.

In my late 20s, I finally found a doctor who was willing to consider my symptoms of subclinical hypothyroidism. We did a trial of thyroid meds, which improved my life greatly. I stopped skipping periods and my skin issues improved. I had other PCOS symptoms that didn't abate but the thyroid meds blunted the worst of them. I felt like a reasonably normal human being again. I felt SO much better once I started on the thyroid meds, even though it made little difference to my weight or body size.

My lipedema did worsen in my 20s. My legs got larger, my arms got larger, and weirdly, my bust also got suddenly larger despite a stable weight. By my late 20s, it was quite hard to find clothes that worked for my body (large bust, small waist, very large hips).

My legs were pretty heavy by my 30s; I couldn't wear boots or knee-high socks anymore. It was hard to find clothes that fit me, even with big-city clothing stores. Still, my legs didn't interfere with my life too much. I had no mobility issues and I was able to be active. I wasn't any kind of athlete but took periodic aerobics or yoga classes and did a lot of folk dancing, walking, dancing in plays, and just generally enjoyed my life.

Mid-30s and early 40s; Four Pregnancies

Poster from LASS (see above)
My husband and I decided to start a family in our 30s. I was lucky to have the ovulatory PCOS phenotype, so once my thyroid issues were treated, I never had any trouble with my cycles again and had no trouble getting pregnant, even into my 40s. I'm so glad we waited to try until after my thyroid issues were addressed!

I had four pregnancies between age 33 and 43, resulting in 2 girls and 2 boys. The first pregnancy was rough because there was no information on pregnancy at a larger size available then, and I encountered a lot of size bias in that pregnancy. I had a nightmare cesarean after a long hard induction and developed PTSD. Breastfeeding was rough at first because I got poor advice. Afterwards, I spent a lot of time educating myself about pregnancy and breastfeeding so I wouldn't go through anything like that again, and started my website to help other large moms get information and empowerment.

I had much better experiences with my later pregnancies. I did have another cesarean after a long hard labor with #2, but in some ways it was healing, even if it wasn't the birth I wanted. With my last 2 children, I had VBACs (Vaginal Births After Cesarean), and they went a long way towards restoring my faith in my body. So did breastfeeding all four of my children long-term.

Some women with lipedema find that pregnancy and birth worsen the lipedema. For the most part, my experiences were normal and I didn't experience the severe issues that some women with lipedema do in pregnancy. I didn't gain much weight and I didn't develop any serious complications.

However, I did gain more lipedemic fat in my abdomen with each pregnancy and I really started to feel the fat nodules under the skin there. This wasn't the result of pregnancy weight gain; I gained less than the weight of my babies with each pregnancy and ended all four pregnancies at about the same weight I started them. But despite being the same weight, I had quite a bit more abdominal fat afterwards. Classic lipedema.

Some women with lipedema find that pregnancy and birth result in secondary lymphedema. I did find I experienced severe swelling after the births of #1 and #4, but not the others. Why I had it with only some births but not others is not clear but it's interesting that I only experienced it with my daughters. Of course, birth interventions can also influence edema. It's my opinion that it takes a combination of factors to cause problems.

One major negative thing was that I had a LOT of back pain and joint issues (pubic symphysis and sacro-iliac joint issues) in my pregnancies. I had a lot of pain until I finally started seeing a chiropractor in my 3rd pregnancy. Since lipedema is associated with joint laxity and hypermobility, that (plus my history of car accidents) may well have been the source of my joint issues.

Seeing a chiropractor highly trained in pregnancy starting with #3 was extremely helpful in getting my back and pelvis aligned. It reduced my discomfort tremendously and helped the baby be in an easier position for birth. I strongly believe it was the reason I was able to have normal vaginal births (VBACs) with my last two children but not my first two. My last two babies were better-positioned and far easier to birth and I really credit that to the chiropractic care.

Despite being nearly 43 and "morbidly obese," my last pregnancy was my best. Even the edema and lipedema flare I had postpartum was a relatively small blip on the radar. Don't let the fact that some women with lipedema experience difficult pregnancies put you off having a baby; some women with lipedema do just fine in pregnancy. It's probably sensible to try to avoid the big interventions like inductions and cesareans whenever possible because they predispose to edema and complications afterwards. Remember that lipedemic bodies can give birth just fine naturally with a truly size-friendly provider.

Personally, I did not find that lipedema affected my pregnancies very strongly; my biggest difficulties were with weight bias/over-intervention by providers, and in dealing with hypermobile joints during pregnancy. However, I did find that pregnancy increased my abdominal lipedemic fat every time, despite almost no weight gain, and I did experience significant temporary edema after two of my births.

Perimenopause and Menopause


As I transitioned into middle age, I did find that my leg size increased quite a bit, especially as I went through perimenopause and menopause from my mid-40s to mid-50s.

More than simply a size change, the shape of my legs changed. I developed major fat pads and "folds" just under my knees, and I got some major-league "cankles" (calf-ankles). My arms have also gotten much larger now. I now have a truly significant amount of fat on my hips, abdomen, legs, and arms, and people really do stare. Although I am pretty at peace with my body in general, it's not always easy.

Clothing-wise, lipedema has made aging more challenging. Finding good clothing is always hit-and-miss due to my unique proportions. Cold weather outer gear and rain gear have been my biggest challenges, as I've written about before. I often have to buy men's gear, which goes to larger sizes than women's sizes but it is geared towards a big belly and no hips, which is not my shape. Still, it's better than nothing. I have found good coats in my size through Columbia Sportswear but I have yet to find a pair of rain boots, rain pants, or snow pants which really work well for me.

In summer, I do wear shorts and go swimming and the heck with anyone who doesn't like it. Most of the rest of the year I wear pants, the comfortable kind in cotton-and-spandex stretch fabric. I found my tolerance for restrictive fabric has diminished. Now, I mostly care about whether my clothes are comfortable. I wear pants or long skirts at work or when speaking to help others focus on me instead of staring at my legs. It's hard enough for people in our society to take fat people seriously; it's even harder when you have lipedemic legs. So in certain situations, I do cover my legs and arms to be taken more seriously, but that doesn't mean I always dress that way.

After some car accidents in my late 40s, I developed significant knee problems. I'm sure my weight didn't help the injuries, but I'd been at the same weight for many years without any problems so it wasn't all about my weight. Yet the orthopedic surgeon I consulted told me my knee pain could only have been caused by arthritis due to weight, despite an x-ray showing very little arthritis the year before the accident. He refused to do an MRI, saying it was pure coincidence that the pain developed after the accident. He was unwilling to treat my knee issues with anything other than weight loss or injections. We compromised on physical therapy but it didn't help. I haven't been back to an orthopedist since. I should have my knees replaced but am reluctant to risk having surgery cause a lipedema flare.

The difficulty in finding a doctor who doesn't blame everything on weight is a source of continuing major frustration to me, especially as I age. It's hard to be taken seriously as a person of size when you are young: it's even harder as a middle-aged woman. We are virtually invisible in society and especially in medicine.

Cancer


As if that wasn't enough, it gets harder. My lipedema was made worse by the fact that I was diagnosed with cancer in my mid-50s. Not any of the cancers that might be associated with weight, but lung cancer, a type of cancer that is completely unassociated with size. Talk about a shocker. I never smoked or had any other risk factors. The only possible risk was perhaps genetic ─ my birth father died of lung cancer in his late 50s ─ but doctors tell me this type of cancer is not directly inherited. Who knows why I got it.

My cancer was largely silent at first. I had very few major symptoms until it was advanced. The subtle early symptoms were things like breathlessness, some hoarseness, lack of endurance, and weak legs. I blamed it on being anemic and getting out of shape. I kept trying to get back into shape but just could not sustain my exercise program because it made me so fatigued. Yet nothing felt really alarming.

The first symptom that was really obvious and alarming was large lumps under my skin ─ subcutaneous tumors. At first I assumed they were lipedema nodules, but when they started appearing in areas not normally affected by lipedema (spine and shoulder) I thought they were lipomas (fatty benign tumors) or perhaps Dercum's Disease, which some patients get in addition to lipedema. However, the lumps on my body were not painful, unlike Dercum's Disease, so it didn't fit perfectly. I made an appointment to see a doctor but for various reasons the appointment got put off.

Eventually I developed severe respiratory symptoms. We thought it was pneumonia. I didn't see my normal care provider due to circumstances, and the other doctor didn't take it seriously. He should have done a chest X-ray but he didn't. He said it was just a sinus infection. We tried antibiotics but they didn't help. I kept going back to the doctor multiple times and he basically told me to tough it out and I probably just had asthma. (Cause you know, fat.) Due to all these delays, by the time my cancer was diagnosed, it had spread all over my body.

How did lipedema affect my cancer diagnosis? It certainly made it more difficult to figure out because we thought the subcutaneous tumors were part of lipedema or Dercum's. And of course the weight that goes with lipedema meant that my doctor did not take my respiratory symptoms, weakness, and fatigue seriously, even though they were very serious and debilitating. By the time my cancer was diagnosed, I was nearly dead.

I am lucky that my particular mutation of lung cancer does have some treatments available, and that means my prognosis is better than some. Many lung cancer patients die within the first year and I have already surpassed that. My targeted therapy treatments brought me back to life and made me mostly functional again. I'm not back to normal but I'm a lot better than I was! However, I am unlucky in that my cancer is not curable. It will likely kill me but the treatments are changing so rapidly that it's difficult to predict the future.

The cancer treatments and related complications have triggered the development of lipo-lymphedema ─ lymphedema on top of  the lipedema. This has been difficult. One of the side effects of my first cancer medication was severe ankle and foot edema. Although my feet had always been spared before (one of the defining aspects of lipedema), suddenly now I had massively swollen feet as well as legs. Eventually I changed medications and my foot swelling went away, but I still struggle with leg lymphedema.

I have to be honest; the increase in leg size has been quite challenging. It makes it harder to get around and it's very tiring. Cancer often involves muscle wasting; a lot of food energy is diverted to the tumors and the cancer starts cannibalizing your own muscle for additional energy. To be a large person with lipedema and then experience muscle wasting means that mobility becomes a real issue. After a stay in Intensive Care, I had trouble walking for a while. I had to go to rehab and get physical therapy before I could return to my home. Now I am much improved, but walking is still definitely exhausting and I don't go all that far. I miss taking a nice walk but am trying to build that up to that again.

Dealing with Lipedema


Dealing with lipedema has not been easy over the years, but has definitely gotten more challenging as I have aged and other health challenges have arisen. When I was younger, it was more of an aesthetic problem and a problem with finding clothing than a real interference in my life. It didn't affect my mobility much and I did most things I wanted to do. However, lipedema plus cancer has now affected my mobility and I find that very difficult, though I try not to let it get me too down. I work hard not to let lipedema or cancer define my life, but it's not easy some days.

The things that I have not found helpful in my lipedema journey are dieting of any kind and rigid attitudes about food. I don't follow either an anti-inflammatory diet nor a ketogenic diet; these approaches are simply somebody's guess at a treatment; there is absolutely NO proof that they help. At this point, nobody's even tested them so it bothers me to see them talked about in lipedema circles as if they are a proven treatment. They're not.

Unfortunately, many people in the lipedema community are still stuck in the dieting mentality and weight loss emphasis. Food restriction is a strong thread in many lipedema and medical organizations' guidelines. That is very off-putting to many people of size who would otherwise involve themselves in the lipedema community. Many care providers try to be understanding about weight issues, but the one thing most cannot understand is clients not actively trying to lose weight. They have been taught the "good fatty/bad fatty" paradigm; you can be fat, but that's no excuse for not continuing to try to lose weight. But for me, trying to lose even the 5-10% doctors recommend means playing Russian Roulette with my body because weight loss always ends in a rebound for me. Furthermore, I refuse to be a famine victim anymore. I'm done trying to starve myself.

Many women with lipedema, especially the more severe cases, choose weight loss surgery to try and cope with the physical effects of so much weight. This is a personal decision made by each woman and I am not here to judge it. However, from what I've seen, I don't believe it's very effective long-term for lipedema. Weight loss is mostly from other parts of the body and only minimally from lipedemic areas, and significant regain is very common after a few years. Personally, I am not interested in weight loss surgery of any kind because I have seen too many people with bad side effects after a few years. Lipedema is bad enough without adding malnutrition issues. But that's my choice; everyone gets to make their own choices about it.

Of course, we don't want to add to our lipedema by being excessive. I try to be sensible about carb intake and not over-indulge, but neither do I abstain from carbs, including sugar. I just try to be reasonable. My motto is everything in moderation (including moderation!). I try to avoid getting neurotic over food or making "good food/bad food" judgments; that is eating-disordered thinking. Some food is healthier for you than others but that doesn't make you a better person for eating it, nor will it make you skinny. I hear friends trotting out the usual "it's-a-lifestyle-change" cliché but if it eliminates major food groups or is highly restrictive, it's still a diet. Food Police moralism isn't helpful. Food is just food; simply be sensible about it.

I try to follow Health At Every Size® (HAES) paradigm instead of a weight-centric one. HAES is a health approach that de-emphasizes the scale, restrictive eating, and punitive exercise; it encourages intuitive eating and enjoyable movement. I aim for weight stability and reasonable eating habits, and use lab results to guide my health and nutrition decisions. I find my weight stays reasonably stable with that approach.

The cancer has made nutrition more challenging because the meds change the sense of taste and food is often very unappealing. Muscle wasting and malnourishment from cancer is real even for fat people, an irony which is not lost on me. My oncologist has emphasized the importance of eating and getting enough calories, even if they are not "perfect" nutrition. It's hard to let go of all the pressure from people to eat this or avoid that to "fix" my cancer, but my doctor says it's more important to just eat. Your body needs energy to deal with the cancer.

The care practices I personally have found most helpful in my lipedema journey include chiropractic care, medical massage, and complete decongestive therapy. The chiropractic care and massage helps address the hypermobility problems and muscle tightness than can occur. After I developed lipo-lymphedema from the cancer treatments, I found that Manual Lymph Drainage (MLD) and compression were immensely helpful in preventing some of the skin complications. At one point in cancer treatment, my legs had such severe swelling, my skin cracked and leaked lymph fluid. I developed a mild cellulitis infection, which we were fortunately able to nip in the bud with antibiotics. I've had to become much more careful about caring for my legs and keeping down the swelling. With MLD and compression, they are doing okay.

If I had unlimited money and no cancer, I would pursue specialized liposuction for the lipedema; it has to be done by specially trained doctors. Proper compression afterwards is critical. Research so far shows this type of liposuction to be quite helpful for many people. Sadly, most insurance will not cover this and my budget does not allow it, but it may be a valid choice for some people with lipedema.

Emotionally, I find it difficult to deal with the judgment heaped on people of size. When you say that you have lipedema, people think you are just making excuses. That I find really frustrating, especially when it comes from friends. I know some think I could lose weight if I tried harder, and that hurts. But I can't control what other people think, and anti-fat bias is so prevalent in our society it's no surprise they think that way. I try not to let those biases get in the way of friendship as long as they are respectful.

While I can't honestly say I'm thrilled with the appearance of my legs or arms, I don't let it bother me too much because there's realistically very little I can do about it. I don't like being stared at, but I try to see it as the other person's issue, not mine. Remember that how people react to you often has more to do with their own fears and insecurities, not yours. Let condemnation and judgment roll off of you.

I personally have been fortunate to have never struggled with depression the way that many people with lipedema have. That doesn't mean that dealing with lipedema and with cancer has not been frustrating or upsetting; it most certainly has! But depression is not one of my issues and I know that's lucky.

However, anger is one of my issues. Sometimes it makes me SO angry that I've been saddled with PCOS and hypothyroidism and lipedema. Talk about a genetic triple whammy! That is incredibly frustrating. And now cancer on top of that?!??! So incredibly unfair!!!!!!!

Having all of those conditions just sucks and I do sometimes indulge in the "Why me?" game. Sometimes I throw myself a really good pity party and let myself wallow in it for a while. I think that's reasonable and healthy ─ after all, having these conditions DOES suck and it is TOTALLY unfair. It's important to acknowledge and mourn your challenges and let yourself be angry. But spending too much time in anger is not healthy either; I don't want it to keep me from experiencing the positive things in life. So I pick myself up, brush off the negativity, and remind myself to count the blessings I do have. That helps counterbalance my pity party days.

Being adopted has added to my emotional frustration; I would really like to know more about my birth parents' genetic heritage so I could see how genetic any of this really is. I know there is an extremely strong history of diabetes and autoimmune disease on my birth mother's side, which leads me to suspect an autoimmune component to lipedema. However, it's been difficult to get more detailed information. I know there's a strong history of cancer on my birth father's side, and that he died of lung cancer at about the same age as I am now. However, there's no way to know if it's the same type of lung cancer or not, and we'll never know. That's a difficult burden, because I don't know how concerned to be for my children.

I try to remind myself that I also have good genes that balance these unfortunate ones, and I hope I passed on those good genes to my children. I try to remember the blessings I did inherit. Of course I have worries about my lipedema. How could I not? But now they've been supplanted by bigger worries, namely cancer. In the long run, lipedema is small potatoes compared to cancer. So while we have every right to be upset about our lipedema, remember to keep it in perspective. There are other challenges out there too. Keep it all in perspective.

Some days it's hard to be positive but mostly I look at my children and my spouse and feel blessed.

Final Thoughts


To summarize, I believe I've had lipedema my whole life, to one degree or another. I was never a "normal" size and I always had a pear shape, even as a young child. Puberty made it worse.

However, the lipedema really kicked into high gear as a young adult and I gained a tremendous amount of weight despite doing everything I could to stop it. Lipedema probably acted synergistically with PCOS and hypothyroidism and that's why the weight gain was so severe.

Dieting seemed to make the lipedema worse. The dieting made me gain weight rather than lose it over the long run, plus it took me close to an eating disorder. For me, it was much healthier to stop actively trying to lose weight. Instead, I follow the Health At Every Size approach and that has been incredibly helpful to me.

The lipedema in my legs and especially my belly got mildly worse with all my pregnancies and I had significant foot/leg edema after two of my pregnancies. However, other than that, it really didn't affect my pregnancies too much. I was fortunate in that way.

The lipedema got worse with peri-menopause and a major car accident but I was still mostly functional. My diagnosis of cancer threw a new wrench into the mix. The treatments for cancer made me develop lipo-lymphedema and I have struggled with that, but Manual Lymph Drainage and compression has helped. My mobility took a big hit; for a while I was in a wheelchair but I can now walk and climb stairs again.

While lipedema and cancer give me significant challenges, I get on with my life and I don't let it derail my happiness. I don't let it silence my voice, my contributions, or my opinions. I will not let the lipedema or the cancer define me.

I try to make sure that I continue to live my life with joy and purpose. Lipedema does interfere with my life, but I refuse to let it make me unhappy or to take away my pleasure in the important things of life. Cancer may take my life eventually but I will live as fully and as joyfully as I can until then.

How has lipedema affected you? And how do you try to handle it proactively?


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