Tuesday, November 5, 2019

The Lipedema World Needs Fat Liberation




I thought when I found the Lipedema community it would be a place of support, but while I have found some support, friends and answers there's a lot of disappointment. The fat hatred in the Lipedema world on Facebook is so immense, I can't take it. It began a drain on my self esteem. All they care about is diets. The toxicity especially for supersized people is actually worse then any I've encountered in any previous mainstream diet program.

I'm done with the online boards. I'll leave them up for any discussion of compression etc, that may be of interest for practical health purposes but there's no support there, just weight loss competitions. This country is so brainwashed about a variety of issues. Things are worsening for fat people.

Even though Lipedema is known not to be caused by overeating, the whole Lipedema world is obsessed with weight loss, to the point, I believe it is delaying a real cure, for our failing lymphatic systems. Some play the mind game of telling us we must do everything possible to lose our "non-lepidemic fat". They play games telling us that fasting is not dieting. Some seemed to believe that if you stop eating after dinner, you will automatically lose weight, every diabetic on earth with any interest in controlling blood sugars, does not eat after dinner. 
On top of that many of the things they say will "help" Lipedema are things that are accessible only to the middle class and beyond. like yoga classes and special foods. Maybe this is because it is a woman's disease. I have had to distance myself from Lipedema boards because the constant drum of diets, fat hatred and more led me to more despondency, and depression rather then support and hope.

Watching a huge litany of smaller lower stage Lipedema women post photos of their starvation induced weight losses affected me very negatively. The showing off never ends.  Most would lose some fat weight while their legs stayed big but everything was focused on getting smaller. I noticed with time, most stage 4 ultra fat people like me weren't posting pictures anymore. Why would they? We are so beyond the pale no one wants to know. We would be lectured to go starve ourselves. After Lipedema crosses the fibrosis line, weight loss because even more of a pipe dream.  I noticed on several Lipedema boards, that most people over a certain weight disappeared. They noticed they weren't welcome and probably they got tired of being made to feel like "nothing" and sick of the fat hatred like me too. One irony is one board admin, wrote that laughing and reducing stress would help Lipedema. I have no argument with that, but how will that happen when life is nothing but a list of goal posts we never can meet?

One medical professional who has not seen me in a year, said "Wow you have lost weight!" but then I found out I had gained 5lbs in the last 6 months. I believe I HAVE lost weight on top, but due to the swelling it's not showing in the weight numbers. I would weigh a 1000lbs if there was no Flexitouch or compression in my life. Now my weight due to fluids can differ up to 20-30lbs so I try not to get bent out of shape over weight that can come from a day's bloating, and try to keep it to a baseline, but I weighed 525lbs and was 520lbs 6 months ago. I was 534 a year ago.

I still go to the gym. I like the gym though at times my mind seems to enjoy it more then my body. A cold can throw me off too. Late last week I was there, coughing my brains out, and my lungs sometimes fight me too much.  I am still going and will be there tomorrow and I have had to buckle down on food for a variety of other medical reasons, but weight remains scary and a problem for me. Just to keep diabetes and thrush at bay means forgoing all sugar, and I don't mean just giving up desserts, but giving up juice, or even cereals or yogurt with too much sugar in it. I had to give up beef completely all beef even lean beef. My diet is already extreme to stay alive. But in the "nothing's ever good enough" world we live in, I am supposed to get all these magic results. I ate a baked chicken breast and salad for dinner. [blood sugar 116 this morning]Well no magic is happening. The false promises of the diet world  are like religion.

I was really busy last week, for me. My body bloated and hurt like hell yesterday. The pain is not doing good things to my mind. Every time I am "active" or play the part of the good fatty who is "not lazy", the pain wall can be immense. They won't give me pain killers citing my severe COPD and telling me most would put me into respiratory failure.

Other times I just want to "have a life" and go DO things, because I want a life outside of bed and illness. Chronic fatigue is there too, playing it's part. There's times I am so exhausted, just to do basics, it's like I am going insane.  I am shutting down into weird stoic like states, I notice with the hearing and more, it's like I can barely keep up.  If I was not married without a husband's help there's no way I could even manage in life. It's like living in a punishment factory.

There's times I feel like crying from pain, but a certain emotional numbness is taking over. Today I am in bed. I have noticed every time I do a lot for me in a week. My UCTD skin sores and rest go nuts. My mouth breaks out in ulcers.  I learned to hide pain and not complain in real life, to keep narcissists from feeding on me, but it's doing weird stuff to my personality. So I have a bad Lipedema day, my husband got me to the gym last week, I sold some 50/50 donated art work at a church rummage sale, I had to do something household related,  I went to my scholarship art class I take every fall, and well I collapse into bed after nebulizing my lungs, wrapping my legs like I always do and spending time in my Flexitouch, and read these Lipedema boards that tell me "nothing I do is ever enough". 

Now instead of Weight Watchers or Atkins, we are all supposed to only eat one meal a day, or go days without water--dangerous, or eat no carbs with imagined fantasies of ketosis, and go on extreme diets. To please who? Our corporate masters? I can tell 99.9 percent of the Lipedema world has never heard of fat liberation or size acceptance. Thinner people rule in a status level with the stage ones holding court over the stage fours like me. Our exit from the health support boards does not surprise me. I was banned from more then a couple of the boards for questioning the diets, and other insanities. Too many are  ready to make profit, off suffering people. On one board for severe stage Lipedema, my arguments with a woman selling "shakeology" got me banished a few years ago that diet I guess has already fallen off the fad list.  The voicelessness of anyone on these boards who tries to talk about supersized realities, is immense. You are either doing extreme things to take weight off, or you simply don't matter.

With my malnutrition, anemia and hunger levels, all the people giving me the constant litany to "eat less and you will lose weight" can go fuck off. It doesn't work in this body. I am pissed off, that things like intermittent fasting and those horrible diets I wrote about the other week are being pushed so heavily. That's what they got? Haven't obesity researchers proven dieting fails most people? So what, Lipedema people are supposed to play the 95% losing roulette wheel too? You see all the ones in their early heady days of weight loss, but how many drop off when the metabolisms drop? I wrote to one true believer, that I used to be MIDSIZED TOO in my 20s too. I weighed 200 and something pounds and worked and walked for three miles for fun. Then the HUGE weight gain came. Some of them probably will stay mild, they won't become severe, but the lack of validation is immense. I used to be young too, thinking life would turn out differently, and that I could "diet" all my weight off too.

I find myself wondering did I lose fat weight on top but the stuff on the bottom stayed? My MLD even told me by measurements I took a liter off one leg and the other one was smaller? She told me everything was doing great. Measurements seem more accurate then weight does in my book. Was that from an extra water pill that day? I kept myself wrapped and never missed Flexitouch. Yesterday I was sitting up for a volunteer thing, I had to go crash in bed by 4pm, and while my legs stayed down from compression, my stomach and hips grew so huge, I could watch them grow, just from sitting up. That stuff seems to be worsening. I swear I would weigh a thousand pounds if I did not have a Flexitouch machine to take it down every night.

Was the scale even accurate? So much of this confuses me as you know. I went on another scale around 4 months ago that said I was still over 500. I had other people tell me I looked smaller on top too not just the medical professional.

Most of the Lipedema world remains entrenched in the weight loss advice of the year 1980. Yeah that's when Atkins was big and supposedly Atkins-aka Keto will save us all from the misery of our body. This is hard to take. There are times where I wonder if I will go mad knowing the more I do, means the more pain, swelling and fatigue. I want a damn life too, and how would you feel if every time you tried to be a normal person and did things, that meant pain and fatigue so scary you thought you were going to die? Add to my mental health list, that my body was used against me by a hateful family that rejected me to the core of my being.  It occurs to me that if I was thin, diagnosed with chronic fatigue, I would not be judged for having to be in bed or lectured on how inactivity worsens weight gain. My doctor means well, he knows and admits I have extreme issues but I know he sees bed-bound fat people everyday being a housecall doctor and probably knows the cusp of mobility and immobility at these great weights is a fine line. I have been told bluntly I am the most mobile one at this size. Even when I am housebound I track the weather  to make sure to go out on the days I can, so I do not lose mobility or stamina and it can go fast.

And then on top of it, I see these health support boards, that tell me I am "not doing enough". You are still fat, we don't care that you cooked cauliflower the other day or are eating apples or gave up all sugar, everything is about weight loss and that number on the scale. It's like religion, all the false promises, heaven on earth, do these steps and your body will supposedly get smaller and you can join the thin minions? You are promised deliverance for your compliance. Everything is about being thin and smaller and fitting in. Their invalidation of my experiences and talking about how my body operates is harmful to my life, so I am going to walk from their boards and go to a read-only status which I have been mostly on for months.

Years ago on this blog I wrote against NAAFA and wrote about my concerns about size acceptance, since my deconversion from fundamentalist Christianity some of my attitudes have changed about facets of size acceptance I disagreed with.  I am RETURNING to full blown fat liberation. How do I write, I "get it now".  Even Marilyn Wann doesn't annoy me so much anymore. Supersized fat people have the right to be happy too. Maybe some believe our lives should be nothing but austerity and suffering but forget that!

I regret how fundamentalist Christianity gave me so much confusion about fat rights. At this point in life, I know I am never going to be thin.  The diet queens and judgers just make me miserable. I got to get out of the few years of life what I have left supersized or not. The diet dreams died for me long ago.  I wish that I was not silenced by so many at least I have my own blog as a platform. I will still go to the gym because I like it and it helped me breathe a bit better, and cook and eat vegetables--I'm adding more vegan items to the monthly menu, but at this point the fat haters can go jump in the lake. I am sick of their crap, sick of their false promises and sick of their judgment.

I got to get away from these people, they are harming me. I have no voice in these circles, I figured that out. If I learned anything as a recovery ex-scapegoat and ACON, get the hell away from people who make you feel like shit. Don't try to change their minds. I write this article for the fellow Lipedemics who like me realize something is very wrong in the Lipedema world. Surely there are stage 4 people reading those Facebook "support" diet sell-a-thon" Lipedema boards, who may even weigh more then I do, or who have lost their mobility or who are laying in a nursing home right now. If mobile on walker me, felt so bad, how bad did they feel?

People are getting fatter and that it is due to toxins in our earth and society which are growing and worsening the adulteration of food is still a problem. The hatred of fat is about authoritarianism, imposed false beliefs and the expectation everyone conform and comply and lies about how all bodies work the same. How many of us with severe Lipedema suffered for years while being undiagnosed and told that diets would save us? While health is touted, I realized no one really cares about health, when the focus is weight loss and techniques that have been known to fail for over 40 years. There is an utter feeling of betrayal that so many in the Lipedema world are invested in selling diets that are doomed to fail.  People should pay attention to eating healthy, but Lipedema is an illness. It did stuff to my body I DID NOT CHOOSE. We are being held back from real answers by all the fat bigots and profiteers in the diet industry complex.

Weight Bias and Lipedema


Mental Health and Severe Lipedema

14 comments:

  1. Thrown Away DaughterNovember 7, 2019 at 12:16 PM

    Wow. loved this article.

    "I got to get away from these people, they are harming me. I have no voice in these circles, I figured that out. If I learned anything as a recovery ex-scapegoat and ACON, get the hell away from people who make you feel like shit. Don't try to change their minds. I write this article for the fellow Lipedemics who like me realize something is very wrong in the Lipedema world."

    Spoke with a retail store sales person who is large, he coined a word - Size-ism. That's when people discriminate against large people.

    The next time some one puts me down by calling me a Fat Bitch I'm going to say, Thanks.

    I am sorry you are in so much pain. If I could wave a magic wand and make it go away I would. You are an inspiration.
    Self Acceptance is so very important. I struggle with that and give myself very bad, negative self talk. It's hard work to stop my constant self criticism. Sometimes I don't want to leave the house but force myself to. I love the size positive models like Tess Holliday. I think of her and then I"m able to leave the house.

    Keep going, Peep. Thanks for having the courage to write. If wondered if you thought about doing a pod cast or youtube video's? Just an idea.

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  2. Hi Thrown Away Daughter, yeah sizeism is a good word to sum things up. It's sad to see stage 1 and 2 people lord it over stage 4s, it's like I am not even a person on those Lipedema boards. The invalidation is immense. One thing I notice is wealthy white privileged women trying to lord it over on me. The classism is extreme. There are good people in all socioeconomic classes, but the way I am talked down to, where they simply invalidate my experiences, got very wearing. I noticed how they told me to always do things I simply didn't have the budget for. Even their diets were well beyond my means. I have to eat canned food and some carbs, this week, we are on food co-op food which means some canned vegetables and pasta. There was one woman who displayed her restaurant level fancy dishes, I thought of how much that would cost and it was way beyond my means. We had these cheap pork patties and some green bean casserole for dinner. The pork patties aren't too bad because they are full of soy, ironic...LOL makes them actually less damaging to blood sugar which was 109 this morning. I actually ate too little because I woke up at 4am starving my ass off. [sugars will hit a hunger level and wake me up] We went to the gym, at least lungs seem to be cooperating enough for me to have gotten my 20 minutes on arm bicycler done, since that illness, last week, they were not so cooperative and felt like I would die a few times getting it done but yesterday could breathe and got through.

    Thanks regarding the pain, yeah I am laying down a bit today, got up to do dishes, have TONS of housework to do today. It is overwhelming all the time. The pain sucks, I do worry about the shut it down mode I am going into. yeah wish we all had magic wands.

    Agree about self acceptance. It's hard in this world. Even when we feel good, they come at us. I am realizing I have little in common with the competition and diet queens, there's something about the upper middle and middle classes I can't stand, none of them enjoy life anymore, it's all about measuring up and I am so far beyond the pale, I don't even meet their measuring sticks. I think some of these women are skinny minnies, whose plastic surgeons gave them a stage 1 diagnosis to get the fat off, and they glory in showing off their svelte bodies to the fatties. Most people in my size range are pushed off but they got enough internalized oppression types who have dreams of being thin too and still cling to those. Yes I am glad for those like Tess Holiday.

    Thanks for your kind words, I thought of doing videos before, but due to ACON stuff, can't let anyone know of my real identity, lol maybe I should cut face off or point camera elsewhere. I am probably too autistic to translate well to film but it may be entertaining. I text better then I speak. Thanks.

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  3. Thrown Away DaughterNovember 10, 2019 at 4:10 PM

    Peep, I just thought of this. For all anyone knows those people who post their restaurant food and their alleged weight loss, what if they're just making it all up? What proof did you ever get that they're for real- as in live people??
    I was very into message boards when I first got out of the cult. Way before Facebook- I'm blocked from their group on Facebook btw, One of many. Ha Ha. But after a while it felt like a job I wasn't getting any understanding, compassion or affection. We were flipping into the roles we were forced into in the cult - which means I was a piece of garbage to them and I did all the heavy lifting. The pushiest one who was always telling me what to do and some of the people never wanted to meet in person so, I said fuck it. They wanted to boss me around but didn't have enough respect for me to see me face to face? If I'm not making money from an activity and not getting any understanding, compassion, respect, affection or love it's time to cut it loose. Saves me a lot of time and energy that's for me to focus on my life. Correction in my first post in this thread - when people TRY to make me feel bad or put me down by calling me a Fat Bitch or Fat Ass, I'm going to say, Thanks for the compliment. Now if I can only remember that in the heat of the moment.
    I am having a very difficult time right now and the self acceptance and stopping the constant negative self talk is crucial to my survival. I hear you about not wanting to go public. I called up a friend yesterday and spoke my truth which is I feel like crap right now. My self esteem is very low. I was beating up on myself. Telling her helped me a lot. She suggested that I do something nice for myself that didn't cost money. Painted my toe nails and watched a wacky move Dodge Ball, A True Underdog Story. The nice part is that the main character hates fat people and tortures himself to not eat.
    I highly recommend it, it's very funny - I think you'll like the ending.

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    1. I wonder if they made it up too, the meals were fancy enough like stuff you'd see in Saveur magazine, if this is a person who is working where would they get the time even for one meal a day that fancy. I wonder about the weight losses too. The admin from the board in question stuck up this MODEL thin picture of herself, the whole body, almost seemed like a middle finger to the fatties she saw herself above. She is MAYBE a size 8-10 at the MOST but I would guess 6. So not fat or dealing with anything near what I am.

      I'm starting to believe some are simply saleswomen there to market various diets and life plans to desperate women with Lipedema.

      I've been blocked from boards. I was threatened with banning for questioning the almighty Keto but decided not to push the issue so was not banned. LOL I understand getting banned. Oh religious boards unless deconversion oriented or atheist or agnostic would push me out fast. A lot of questions are not liked.
      Yeah I left tons of the boards too, why stay on places that make one feel like crap or where nothing is ever good enough. Yeah I can see some bossing around. The fix its never stop too, always wanting to feel superior.

      I'm home alot from illness, deafness and Aspie to the hilt so what's wrong with these otherwise "healthy" people so much into their little fiefdoms on line. LOL,
      I definitely am getting smarter about leaving groups like that and not wasting time trying to change people or have them "see the light", that's a waste of time. I do post on like minded boards.
      LOL I need to remember that too, to say thanks.

      Yeah I am wasting time with argument or boards that preach all this priv stuff too, where I never could afford their lifestyles, I mean screw it. I think you got a good idea there about just leaving. I am disappointed by these Lipedema boards.

      Its too bad you are having a difficult time now, I agree about the constant negative self talk. I know I am telling myself to stop worrying about fixing crap and where's it going to lead me but misery, trying to practice acceptance and detachment. With the negative self talk, I know at this age, I am who I am. Did I choose to be born as me with these genetics, no I did not ask to be here. LOL I have some weird thoughts about that stuff. I hide this blog from everyone but close friends, I used to tell people in community about this blog but I got WAY too judged over the ACON stuff. There are ideas on here some consider "too radical" and it's better to keep anonymity. Glad your friend could help. She had a good idea about you watching a funny movie, I've never seen that one. Movies are an outlet to me, don't talk about it much here, but I watch all the Classic movies, Bette Davis, etc etc. That one sounds like it would be be funny thanks for the suggestion. :)

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    2. Thrown Away DaughterNovember 28, 2019 at 10:45 AM

      Happy Thanksgiving to you and yours. I"m grateful for YOU and this blog. Hang in there. If nothing else to show the bastards you're still alive!!

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    3. Thanks Thrown Away Daughter. I hope you had a good Thanksgiving, mine went well. Appreciate your kind comments! LOL on the last.

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  4. Erm, OK, so you're eating less sugar/starch, that's good. But you're going to feel like shit and not do yourself any good without healthy fats. Fatty beef, fatty salmon, fatty fish like mackerel, sardines in olive oil, etc. Fat, fat, fat. The traditional dish found across just about all cultures, where there's fatty meat cooked with leafy greens, is a really good dish that sort of encapsulates what a healthy diet's about.

    A lot of the "keto" community is about buying this and that special food, but it's really about as cheap as any diet if you avoid the commercialism. I find mackerel to be cheap, fatty beef with great flavor is cheap at my local Korean market but you can get fatty "trim" anywhere, and some of the canned fatty fishes are really inexpensive. Yeah I like my almost $4 a can "Bela" sardines from Whole Foods but I also like the cheap brands like Flower and Ligo and Beach Cliff which are all under $2 a can.

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    1. I'm eating a lot of eggs, maybe too many, but I am allergic to all seafood, like death allergies level and can't eat beef except in very small amounts, ie I can't eat a roast beef sandwich but if someone made a lasagna with a little bit of ground beef in it, I can get away with it. I agree the low fat debacle was a mistake but erasing all carb s won't work for me. Cheap for one person isn't for all. Remember I have to supplement my food with food pantries and co-op. By the way I miss sardines very badly, could eat them in my early 20s before the seafood allergy grew worse. I do agree about good fats, nuts, avacados, decent meats.

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  5. I can tell you that nothing nothing NOTHING helped me after age 40 with the perimenopausal hormones other than intermittent fasting, which I have done since Feb 2018. It means NO white carbs, no sugar at all, no sweets, no sweet drinks at all, no dairy no eggs and no junk food. Leave meat out, too, and see if it doesn't help. It did for me, and I pray I can get back to sticking to it again, because if the choice is all the health problems suffering misery or the suffering misery and intense emotional pain of not having the foods , we will do the latter.

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    1. Why no eggs? Those are recommended on every diet I see for Lipedema, low carb. What is left to eat? Some lettuce. I don't know how you avoid hypoglycemia doing this stuff. I've gone the round of trying to tell people, my vision checks out on the 8th hour of no food and the severe headaches begin. No one believes me. How does a diabetic do this? I do stuff trying to push the hours without food as far as I can. [like making sure there's 5-6- hour intervals [8-14 hours overnight] of absolutely nothing not even sugar in a coffee] but I have to live that way to keep the diabetes from killing me and sugars exploding.

      When I was really sick, illness has made me go 2 days no food except some juice, even mouth sores did it a few months ago, I drop insulin so I don't die of low blood sugar but it never produced weight loss miracles. There's something weird about society now where we basically are being told to "starve" ourselves to not be fat, like the environment is so fucked up, that even eating 'normal' food and only when there's hunger pain we are all going to be fatter then hell. Yeah I get tortured thinking give up food, but the physical ramifications are so severe. I must be a bad stoic. :( Or I have satiety disorders from the gates of hell, and thinner people can live with hunger. I was busy yesterday and did not eat for a period of around 7 and half hours pushing the hunger envelope [aka I wasn't forcing the interval at all, just had to do a lot of stuff, that happens on occasion but the hunger pain, if someone told me no food for the rest of the day, I would have been on the floor. One bad thing that happens, too with a certain hunger mark, is IBS comes to visit and dry heaves. I suppose I am going to be fat, the health problems suck, but I am a shitty stoic.

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  6. Peep, I think a LOT of health problems these days are being caused by pollution. Municipal water systems cannot filter out the estrogen in urine that passes through the water supply. And that's just one small part of it. All the plastic in the environment is estrogenic and is harming people. That's probably why there is also so much ADHD, autism, etc. in children. People are being affected in different ways. Those people who pride themselves on being skinny, and brag about it, may end up with cancer or dementia one day. If people would just stop fighting amongst themselves and follow the money, they would know who they SHOULD be fighting - multinational corporations and the oligarchy behind them who are gorging on wealth they have stolen.

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    1. I agree with you. I used to do more articles years ago on what was affecting the rates of obesity but there are studies that connect plastics, endocrine disruptors and gmos to higher rates of obesity. I am seeing so many young people get cancer in my local area it is frightening. One friend, has been diagnosed with stage 4 Hodgkin's Lymphoma and it's entered her bone marrow and she is only in her 30s. People are far sicker then they used to be an earlier too. Even body weight some seem to be skinny slim on the sick side and many are overweight, shaped differently. Even the skinny ones can get sick you are right. The whole world is being oppressed by oligarchies now and the greedy are on a tear. Can't believe who England revoted in, the books must be cooked over there, I can't see there being that many stupid people who love their oppression.

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  7. I think that the problem is that Fat Acceptance has gotten too narrow (pun intended). What brought me to Fat Acceptance years ago was that it was accepting of a fat guy like myself with moobs whose size and shape crossed over into the Fat women range and probably a little too much butt.

    That Fat Acceptance is gone and what we have now is a Fat Acceptance dominated by the writing of a few Fat Bloggers :(

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    1. hi William, I always agreed that fat acceptance should be more open to fat men. I was going to write an article soon asking if fat acceptance has died. I regret some of my earlier religious fueled disagreements, but I don't even know if NAAFA exists anymore, their internet presence is far smaller, there's no clubs of it in my area. There's a few West Coast groups like Fat Lib Ink that is politically involved and for disabled rights I support fully.

      https://squareup.com/store/fat-lib-ink

      I'd join this group if I was near them. Wish I had money to donate to them.

      However outside that and a few "body positivity" writers that pop up, you are right, fat acceptance has majorly contracted like it is "gone" and well, I have noticed I am even more of an outliner writing articles like this. If anything the diets have grown more extreme, did you see those articles where I wrote how extreme they are getting, and the focus on thinness [as part of the achievement cult in this country] has gotten even worse. In the Midwest where I live, I never meet any fat people that know anything about size acceptance or fat liberation. I have tried to tell a few, but they think I am nuts. There's no size related groups here.

      https://www.naafaonline.com/dev2/about/index.html

      Looks like they still exist and have a conference, but was trying to see if there are national groups anymore.

      It looks like only some big city clubs or BBW dating clubs are in existence anymore, it's really retracted. Some of this could be economy related too.

      https://www.naafaonline.com/dev2/education/links.html

      I believe the work world became far more discriminatory towards fat people with time as well.

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