Tuesday, March 1, 2016

The False Shame of Fat Women Affects Lipedema

                                    a picture of my leg wrappings after I took them off.

I  recently got in trouble for "fat shaming" someone on a Lipedema health support board I won't mention the name of here.

Funny thing judging by this someone's wall on Facebook, they looked like they were a size 10-12 with no health problems and these were pictures over a series of YEARS.  Every other post on their very public wall, was an advertisement for the organization they did sales for, and I asked people several times to go look at these public photos but I guess no one did because they did not believe me. The diet they were bringing up was actually one sponsored by the organization they did sales for.

 I don't think I understand all the rules of political correctness. I thought they were a sales-person coming on a health support board and warned people. Aspie honesty got me  hated by some in a group of neurotypicals.  Later I was banned. Well I was made out to be the "bad" person, even though this new poster included "selling a diet" that had Beach Bodies in the name, and I thought some people believed the same way I did about diets, espousing basic size acceptance principles but I guess not. I was the "meanie" for trying to warn of someone I thought was an imposter. They called me a "fat-shamer".

It's weird to be 500lbs and told I am a "fat-shamer" for someone far smaller and functional then me. Can someone explain that one to me? The liberal world bugs me too just as much as the conservative world and all their "go die in the ditch", "pick a job off a tree" Tea Partiers. The speech controls and endless impossible rules are too much.

Yes I'm a big meanie. The Lipedema world has gotten to be a tough one or me. Some still believe in diets and the fantasy of weight loss. It's weird since all the medical literature rightly says this is not weight that can NOT be taken off by dieting. If anything dieting messes up Lipedema more and sinks your metabolism. Many severe Lippys like me have nutritional deficients. Dieting is a joke to me. I got doctors to finally believe me and got diagnosed. Yesterday I had eggs for breakfast, sandwich, and some broccoli slaw for lunch, and rice and chicken with broccoli for dinner. I am not eating that bad. My blood sugar was 122 this morning. So to be told, that I can fix my body with the "perfect diet" is a dream. Yes I have to watch WHAT I eat, but the dream world of  having a body that functions like everyone else died long ago for me. Thinking a diet will fix this is the definition of insanity.

My own body is full of Lipomas and fluid. I see constant weight changes now dependent on how active I've been and how much I've peed off and every night shrink a bit from Flexitouch treatments.  The hormonal crap foisted on me by Lipedema has affected my life far more. In fact I believe much of the research for Lipedema is being ruined because the focus is on weight loss, diets and liposuctions and not the internal health, and endocrine realities of this disease. Because it is a WOMAN'S disease primarily all it seems is cared about is LOOKS, LOOKS, LOOKS. 

Google Plastic Surgery and Lipedema, or Lipedema and Beauty and you will get a look-see at what I am talking about.

Even the liposuction stuff seems unproven to me. What's going to keep the fat in the legs from coming back? The plastic surgeons are setting up for a new market, and on Lipedema boards for early stage women, one can see the model thin, on there who seem to care most about having sculpted legs showing up who complain of having Lipedema and it makes one wonder. Their reality bears no resemblance to my own hell of Lipo-Lymphedema. I believe that the "worried well" market is the focus in the Lipedema world, where the plastic surgeons are diagnosing otherwise thin and healthy woman with Lipedema to do leg sculpting. There are some who seek out the liposuction who are higher stage and who do truly have the condition and some sincere doctors like one in Germany who see it as a break-through but I remain concerned about how so many of the  main treatments for Lipedema all focus on the removal of fat and "being made thin" instead of the root endocrine and lymphatic causes.

In my case,  I renounced the beauty prison and yes this has been mentioned on this blog but the "beauty prison" seems to be running a lot of the Lipedema world. In a disease that has hurt me, brought me endless pain and destroyed my life on a multiple levels including almost dying of sepsis [leg infections that poisoned my blood] how do you think I feel about this development that the main focus for Lipedemics is to be BEAUTY and LOOKS and doing away with the FAT, and becoming THIN?

I have to admit I was disappointed by the people touting size acceptance beliefs contradicting themselves allowing the discussion of another failed diet to be sold to wealthier women who can afford trips to a giant theme park. It was unjust and unfair for "Beach Bodies" to be advanced among many women who have weighed 400lbs-700lbs from a disease we had no control over. Haven't we suffered enough? This was a contradiction to the max. It felt like a middle finger in my face. Of course I was the one being "too sensitive" for refusing the mainstream cultural mandates.

 I believe one neglected avenue of Lipedema is the psychological and emotional. We are being hurt, by the constant diet talk and the non-answers being sold us. We are told that the shape of our body is the thing most wrong with us and that must be corrected no matter what. While there are good medical professionals dealing with the lymphatic system and MLDs and others out there to help us, the beauty imperatives and prejudice against fat is influencing treatment of a disease in a very negative fashion. Many Lipedema women are reporting that some doctors are pushing weight loss surgery and weight loss as the first thing they "must do" instead of dealing with their failed lymphatic systems. There is a weird focus on "non Lipedema fat". How do they know what's fluid or fat or not?

We are shamed for our bodies constantly and some eat the shame, still acting like it is their fault, and they must all conform to societies impossible demands and still "live in the dream" of thinness one day being theirs. I suppose this is why I got banned from the health board. I am too radical for them and a "trouble-maker" because I got a big mouth and I have written against the diet industrial complex for 5 years on this blog. I have pissed off the size acceptance side out there by exposing their "normalization of obesity" and  health "denials" about severe obesity and I have pissed off others by calling out the "diet industry" as completely harmful to our health. My life values are in opposition to those who want perfect clone bodies among humanity, and who sell conformist "beauty" as the highest ideal above all.

 I threatened the "dream" and even some of the denizens of size acceptance will show their true colors when pressed. They don't want to give the "thin dreams" up and no matter their size support the cultural imperatives, that put thinness and the status of the thin above real treatment and research for a severe medical condition. Maybe if they got to the root of the problem, there'd be far less people struggling with severe obesity.

It reminded me of the Lipedema spokes person who got honored by a top obesity organization with several weight loss surgeons on the board that I wrote about before without naming names.

All the focus is still on the fat and the looks of a body and the SYMPTOMS of a disease instead of the inherent disease process within. Cultural mandates of shame among the fat, affecting treatment of Lipedema. The diet industry is a negative influence on Lipedema and Lipedema treatment. I stand by this belief whether they like it or not.


  1. hi, i am a senior,very disabled, and I ate lots of fatty junk,to feel better.but it backfired; now i have a health-problem as well as disability and pain.--i am having a rubber-tire of fat,around my waist, and its bad for my health.people in my family are heavy,but if we gain too much weight,we die from strokes or heart attacks.--so i just cut out the WARM,FUZZY,COMFORTING FOOD. NO JAM! NO TAHINI!NO COCONUT BUTTER!!NO TONS OF POPCORN WITH NICE FAT!! no sweets!!

    I CAN'T KEEP THIS BIG TIRE AROUND MY WAIST, OR I DIE. SO ITS NOT A REAL CASE OF vanity.--i gotta get rid of the sweet-junk-food, or i'll kill myself. i AM AlREADY BAD OFF,ACCORD TO MY DOCTOR.--I have to get healthily thinner, to save my life; but i don't have lipodema, my metabolism is just "very efficient," it does not need much food.My whole family,on dad's side,is like that.We could live on sand, and not lose 5 lbs.
    --THANKS! --DHB, IN VERY HEAVY,BEER-GUZZLING-Oregon, where most of the population is over-weight. --yes, even vegans and greenies!--and Duck-loving-University of Oregon alumni, and sports fans.--(more beer, more pizza!

    ugh. I don't even drink, and i don't like pizza anymore.But,no, mine is a major health-problem, if I stay very over-weight. --and I love very "foodie"-foods,I need to lose it for my health.THANKS! GO DUCKS AND BEAVERS! YAHH!

    1. I hope you feel better soon. I know it's hard, one has to avoid junk food like the plague. Don't be too hard on yourself DHB, just try to have treats and include lots of veggies and fruits as you can get a hold of.

  2. I walk a tightrope each day. If I don't eat soon and often I run out of steam before the day gets started. But a little bit too much here or too much there and I start packing it on but quick.

    1. I think it stinks, obviously it is far easier for people to gain weight then they used to. Average people are put in that place of struggling more with metabolisms too. Hope you can avoid packing any one. I do think weight prevention is a good thing. Once it's on it's near impossible to get off.

  3. I'm sorry to hear you were shamed and banned. I go through this stuff too continually. I wonder if being misunderstood all the time is part of the symptoms we go through as ACON's. I too take it very hard, and I know I put too much stress on myself.

    I would call a size 10 or 12 rather normal, is these people representing the diet industry as obese. I'm not kidding, one time I saw a girdle in a store that was a size 0. I guess they have to be tucked in too.

    I know its getting harder and harder to lose weight. Healthy food is hard to come by. I use food to handle stress and anxiety. Not carrot sticks though, the real junk food.

    1. Thanks Joan, it was difficult. No one ever wants to hear your side of the story either. Some people have gotten so cold now. I wonder if being misunderstood all the time is an ACON symptom. yes plus size models are size 10 and 11. I think it is harder to lose weight or not gain. When I have real money for food, what do I buy first? Vegetables, and the good stuff too. That would be something like one of those 5 dollar bags of sweet peppers. When you see them pricing the food high according to how healthy it is, it's a major problem. Even today, I thought I'm housebound and there's snow all over the ground but I better walk in the hall a bit, so I don't gain weight. Hope you can get more of the healthy stuff too.

    2. If you do eat some comfort food I wonder if some is better then others. I consider rice cakes to be Styrofoam, hate how they pushed those on dieters. I try to snack on protein as much as possible if I need a snack which I try to keep restricted, sometimes that helps.

  4. I'm sorry you have been banned in a group for trying to help lippy ladies to understand their own health problem and leading them in right direction. When I reread this blog and saw emails from GMO food labeling activists, I began to wonder if some dieting propagandist joined the group in order to help Monsanto, Big Foods (GMO laced-diet foods and shakes), Big Pharma (diet pills that kill rather than help people to lose weight), and Grocery Manufacturers Association. In addition, those who opposed GMO labeling bills are wealthy people like Bill and Melinda Gates Foundation, Hilary Clinton, Walt Disney Corporation, Cornell University, and weight-loss industry. These ladies who banned you made a choice to listen to somebody who looks good who is a hired mouthpiece for opponents of GMO labeling laws and those who want to depopulate the world. I'm sorry people in lippy boards mistreated you and banned you for this. Keep up the good work in your blogs. I will pray for you and other lippy lad You could read these articles and see connections there:
    1. https://gmoanswers.com/ask/there-list-all-organizationsscientific-bodies-have-approved-safety-gmos
    3. http://www.thealternativedaily.com/disney-growing-serving-gmo-foods/

    4. http://foodbabe.com/2015/01/22/weight-loss-secret-food-industry-doesnt-want-know/

    1. I realized I was banned for being "too radical". I did share this blog address with some. Being told to diet and no other medical help made me almost lose my life. I was almost 700lbs and had the torture of being unable to even barely breathe for 2 years when I was at the peak weight gasping for air all the time. So if people think I am too "radical" or too much of a trouble-maker, they can get over themselves. They have not lived this life.

      So yes, I am sure some did not like me for non-mainstream thoughts and writings, and for saying the dieting is sending us all to a dead end. I have technically lost 180lbs, which does not mean I am against "losing weight" but I know dieting in the traditional way that is sold out there fails. Lippies need to get to the core roots of our inflammation and altered endocrine systems. Even if I have failed, to lose more weight and get my body more together, I lived far longer then expected. The cardiomyopathy alone was supposed to kill me years ago. The answers that have failed all fat people for 40 years, are not going to help Lippies, but only hurt us far more.

      So I was not happy with a dieting propagandist and someone who had open and public connections with a huge theme park all over their very public Facebook wall being chosen over me. Even if this person was a "real" person and I never got shown any evidence of this, I have the right to tell them diets will fail and are harmful especially to Lipedemics.

      I agree the GMO industry and others's have their hands in this. I believe American people are sickening and dying and getting fatter from bad and nutritionally deficient food.

      It is interesting to me that Walt Disney world advances GMO food.

      It does not surprise me



    2. Even in size acceptance I know I am not welcomed in all of it's circles, because I accept the obesity epidemic as REALITY. I believe the corporations and powers that be in the world are advancing a two tiered lies about obesity, pushing the profit making "answers" that do not work but also advancing a "normalization" of obesity and promotion of it, so no one deals with the growing illness and death. This is why so many size acceptance activists like Marilyn Wann I have disagreed with on this blog, never call out GMOs or megacorporations but tell everyone to love and "accept their fat".


      I read elsewhere online and I do not want to give myself too much importance, this blog is small potatoes, and only has so much traffic, that people who have differing opinions or who are seen as whistle blowers are not welcomed in a lot of circles. In other words question the status quo and you are not people's pal. Whistleblowers can earn themselves catfishers and even wicked people who want to destroy their reputations.

      I got one spokeswoman for Lipedema who has shown up on national TV shows outraged with me when I told her directly the diet industry was harmful to Lipedemics, and no true cures was going to come from that direction. She banned me within seconds.

      I believe the study of Lipedemia, and rare fat disorders could even break open the way to understanding obesity in terms of solving the problem as related to inflammation [which I believe the GMOS are far worsening] and endocrine processes but with false beauty industry and diet diversions, this is only going to be blocked.

      Yes I believe this was a status quo thing, they choose someone who looked good and had a mainstream body and who is OVERTLY selling "Diets" and a trip to a giant theme park, over a long time member of the board. The high status person connnected to a well-known company was favored over a low-status severely overweight Lipedemic. But then I am poor, and have "opinions" they find too radical. I am against GMOs and have posted against them here.

      Thank you anon, you helped me explain this even better

  5. Wendy--I'm reposting your post since you used my real first name, which I know you meant in a friendly way, but I keep anon on here. :P

    ********, speak your truth./ You and me have advanced lipo-lymphoedema and honestly, most days it feels to me like a living hell. Like you I have been robbed of so much. I spent most of my life "dieting"! For years now I have had 1 to 2 weight loss shakes as meal replacements - every day! Most people couldn't even cope with such a strict regimen - and yet still I am afflicted and indeed feel some days positively entombed, buried alive, in what I now believe is mostly "fluid" or lipodemic fat.

    How I "look" is of little consequence to me given the fact I can't walk! So much that I love has been ripped away from me. All I have ever wanted back is a normal life.

    The fact you CAN'T lose "the weight" by dieting is one of the whole POINTS about lipoedema! So these people who go on and on and on about it like it's the whole "cure" seem to be missing that point entirely.

    Like you I eat extremely healthily - always have done. I used to be an athlete, equestrian and sportswoman for goodness sake! I dud not choose to get lipoedema and I didn't even know I had it for years, baffled as to why I got bigger and bigger for no apparent reason. That's why I call this the "twilight zone" disease. Nothing is as it should be....

    We are lucky ******. We have amazing and wonderful men who love us FOR US! Men who can see beyond the lipoedemic fat, real men who love us regardless of what "they" say. Men who believe us and believe in us. We got the best men - and ain't that funny when you think about it? They didn't go for what we are told are the "perfect" thin women, what they are told are the "perfect" thin women - but the human being inside us. Something to celebrate don't you think?

    Shakespeare said, "Truth is truth till the end of reckoning". The truth is painful but I'd rather have that than the delusions. Keep the faith.

    1. Thank You Wendy, I appreciate it. This disease can be a living hell and is very hard to deal with. We have been robbed of so much. For me a career, or any children and it has meant financial ruin. I failed at all the "dieting" too and sorry you tried even weight loss shakes and that went no where. I knew I did not deserve to be this way over what I ate, even though the world told me I was a liar, I knew I was not. Yes it is like being buried, our bodies grew and grew, all the swelling and fluids and lipomas.

      Yes the beauty prison stuff and focus on looks is a joke to those who can't even walk or have serious mobility concerns. I hope you can get a normal life back too.

      Yes I am sickening by all the focus on diets, and the fact I got banned over protesting diets, when diets are what actually made many of us sick. I was told to lose weight and that I was eating to be this way and almost DIED over this so why should I bend over backwards for those who praise the answers that almost killed me.

      I have seen your old pictures and you were thin and athletic and lived an active horsewoman lifestyle. You had a normal life. I had a near normal life until my mid 20s and remember when the switch was thrown though there were earlier problems that told me Lipedema came to me at puberty around age 13. I even joined the golf team in high school and walked for miles then and into my 20s and just got bigger and bigger!

      Oh yes, I lucked out in the man department. We have been together since I was 25 years old. One time I told him, I am alive because of you, and it is true. You are so fortunate for your man too and he loves you for you and can see it on his face. They see the people we are inside.

      Thanks for being a fellow lover of truth Wendy. I've gone through too much to accept the lies and delusions. Thank you for your post!!!