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:

• Part One - Typical features of lipedema and how to differentiate between lipedema and lymphedema
• Part Two - How lipedema progresses, the different stages of progression, and why it's so important to be aware of lipedema
• Part Three - Types of fat distribution patterns, pictures illustrating type and stage of lipedema, how lipedema is diagnosed
• Part Four - Possible causes of lipedema, medical conditions often associated with it
• Part Five - Possible treatments for lipedema, broken down into several sub-posts
•    Traditional Medicine Treatments
•    "Weight Control" and Special Nutritional Approaches (trigger warning)
•    Tumescent Liposuction
•    Alternative Medicine Treatments
•    Summary of Treatment Options
• Part Six - Coping with clothing challenges
• Part Seven - Weight bias in lipedema care
• Part Eight - Living your best life with lipedema

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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No, we don’t have to enforce all the laws – we can’t

One of the ways people justify evil things while still believing that they themselves are good people is to hide behind the rules.  “Yes, it’s terrible that families are being separated, but those parents *broke the law.*”

There are a thousand good counterarguments to that including that in many cases, no, they didn’t.  Seeking asylum is a protected legal right, even if a person came here illegally.  Not only that, but it’s illegal to punish an asylum seeker for coming in illegally if they can show good cause why they didn’t come the legal way.  Since the US has been sending asylum seekers away from official points of entry, and since the asylum application process at a US embassy can take years, it’s not surprising that people fleeing for their lives cross the border illegally.

But apart from that, there’s a stunning hypocrisy when “law and order” people wholeheartedly support a president who’s claimed the ability to pardon himself, and who has pardoned a sheriff for flagrantly abusing the law.  The law, it seems, only matters when you already don’t like the people who are breaking it.

In reality, most people break the law on a regular basis and suffer no consequences whatsoever.  Even if we set aside traffic infractions like speeding and jaywalking, crossing the border without permission is a misdemeanor.  Other misdemeanors include disorderly conduct, vandalism, underage drinking, and public intoxication.  If you drank before you reached legal age, or you’ve ever gotten into a loud argument in a public place or stumbled out of a bar to a waiting Uber or a sober friend’s car, then you are just as much of a criminal as someone who crosses the US border without permission.

The truth is, our system would grind to a screeching halt tomorrow if we decided that every single law on the books had to be enforced to its fullest extent.  For starters, do you really want to prosecute stranded hurricane victims for shoplifting food?  If my house is on fire and I run onto my neighbor’s property, should I be taken in for trespassing?

No matter how carefully rules are written, there are always going to be points when exceptions are needed.  Yes, we should work as many of the needed exceptions as possible into the rules themselves, to avoid favoring only people judges and juries find sympathetic (mostly white guys).  But that effort will never be perfect.

Not only that, but a certain amount of discretion is built into the system at every step. Imagine that every single person who’s pulled over for a traffic offense must be given a ticket.  No more letting people off with a warning, no matter how clean their record is or what other mitigating factors exist.  We’ll probably need to hire more cops just to keep up with the paperwork, and more judges for traffic court.

Now extend that further.  If all laws must be enforced, no exceptions, then plea bargains are no longer a thing.  The state now has to spend money prosecuting cases it can’t necessarily win, because there’s no motivation for anyone to plead guilty to a lesser offense.  If “all laws have to be enforced,” then they have to be charged with every single offense that the evidence supports, regardless of what they’ll plead guilty to.

This also destroys any concept of getting immunity in exchange for testimony.  If you’ve got to prosecute the small-time drug dealer regardless, he’s not going to give evidence against his boss or his boss’s boss.

So, no, we don’t need to enforce all the laws all the time.  We couldn’t possibly, and we’d break the system if we tried.

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Why Are Doctors Trying to Guess Fat Patients’ Weight?

I refuse to be weighed in at the doctor’s office.  There is no medical reason to weigh me in – I haven’t had unexplained weight changes, I don’t need medicine that is prescribed per body weight, so I don’t need to be weighed.

While I don’t think that weighing people is a medical intervention, the doctor does and therefore, like any medical intervention, I’m well within my right to refuse. If they had a good reason (ie: we have to dose this medication by weight) I would consider it. But since they just want to weigh me so that the can suggest that I try to change my weight – which is asking me to do something that nobody can prove is possible, for a reason that nobody can prove is valid, I’m out. For years this has been no problem, they say “step on the scale” and I, politely and firmly, say “no thank you” while I keep walking, slowing slightly to let them catch up after I pass them so that they can lead me to the exam room.

But recently something weird has started happening. When I refuse to be weighed the person asks me something like “do my mind if I make my best guess.” The first time it happened I was so surprised that I said the first thing that came into my head which was “This is not the State Fair…no you may not guess my weight.” She was taken aback and she immediately dropped it.

It was so weird that I did some digging. It turns out that insurance companies and Medicare have started to pay for something called “Intensive Behavioral Therapy for Obesity” In order to charge you, you must have a BMI over 30. BMI (Body Mass Index) is nothing more than a ratio of weight and height. Though it’s become misused as one, it’s not – and never has been –  a health measurement of any kind. It’s just your weight in pounds, times 703, divided by your height in inches squared.

Here’s where the guessing comes in. In order for doctors to get paid for “obesity counseling” they have to have your BMI on file. So if you refuse to be weighed, they simply guess the weight that they need to get paid.

Obviously this is crap, and not just because guessing people’s weight like you’re guessing  the number of jelly beans in a jar is exactly as medically relevant as it sounds. But more to the point, these doctors don’t have any idea how to create long-term weight loss. There isn’t a single study of any intervention that they could prescribe, that has been shown to lead to long-term weight loss for more than a tiny fraction of participants, and that weight loss is often less than 10 pounds. Once again, they would be better off just giving all fat people ponies (with the possible exception of those who are allergic.)

So what do we do? Every fat person gets to decide how to deal with this each time it happens. We shouldn’t have to deal with it at all, and we get to do whatever we have to do to get the medical care we need. That may include educating our doctors, lying to them, or placating them by letting them make up a weight to make a bullshit math calculation that they will use to get paid for giving us information that is useless at best, and most likely harmful.

Here’s some scripting that you might use. By way of a disclaimer, we have the right to refuse treatment, but doctors in most cases have the right to refuse us as patients. Unfortunately, there can definitely be consequences to fighting for our rights to be treated without weight stigma, so we have to take that into account when we decide how to respond.

Here are some options:

Per my rights to refuse a medical intervention, I refuse to be weighed, I refuse to allow you to guess my weight, I refuse to have a BMI calculation made, and I refuse any type of obesity counseling. Let’s focus on what I came in here for.

No, you may not guess my weight. Please just write “patient refused to be weighed and refused to allow me to guess their weight.” I’m happy to sign something if you need me to.

You can try asking them “why do you want to weight me?” or “Is this so you can bill my insurance for obesity counseling?” if they say yes, consider saying something like “I’ll submit to this if you can show me a study where this counseling has led to significant long-term weight loss for a majority of participants.” (Remember, no such study exists, so this might take awhile.)

Just continue to say “No thank you,” while walking past the scale.

If you decline, or don’t receive, “obesity counseling” it might be interesting to check and see if your doctor charged your insurance for it, and if they do then promptly report them.

Again, this shouldn’t be happening. People of all sizes should be able to receive competent, unbiased medical care. Nobody should have to prep for a doctor’s appointment like they are memorizing lines for a (literally life or death) audition. Unfortunately, that’s not something that fat people can always access, so we have to do way more to get even close to the same level of care. Fatphobia kills, fat activism is the cure for fatphobia.

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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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Lizzo & Mod Cloth Love

Lizzo, “I think representation is my legacy,” she says, “and I think that everyone deserves to stand out. I think that everyone is beautiful, and everyone deserves to find their beauty… you’re worthy and capable of self-love, and it’s okay to be discovering that for your whole life.”

Mod Cloth recently interviewed Lizzo and you should really read it (it’s brief) but also click here to see her in a gorgeous rainbow maxi dress!

My love for Mod Cloth has been dotted with much disappointment, confusion, and occasional rage. Why do I keep coming back? Well, because they have items that suit my style, are quirky or just to find perfect thing to go with another thing that I already have. Often I cannot afford their clothes, but I love a good sale and I do occasionally treat myself to something nice. I was a sucker for their “Stylish Surprise” offers where you’d select, say, dresses and only your size and pay a flat rate ($15) and the dress you’d get would be randomly picked by them. This was so fun and exciting until I got TWO the exact same dress at once. Like, seriously?! C’mon!!! Though others have been splendid and now cherished items. Hit or miss!

I know the history of Mod Cloth and how they have relied and used fat community (at least locally for me, SF Bay Area) to further their own profits only to dump us in a hot minute. I know folks who were directly involved in those happenings at the start and it was heartbreaking to hear the personal stories behind all of that. And yes, Mod Cloth was acquired by Walmart not long ago and that is off putting to say the least. I have seen no changes since that happened, though. I still see the same designers and fun items coming in and while I rarely buy things, it is always a delight to add things to my wishlist.

Lizzo is that hidden gem of an artist that makes me pinch myself every time I watch one of her videos on YouTube. She is everything I have wanted to see in the world of music and more. She is a stunning person and a gorgeous black woman! Her style in fashion and vocals is fabulous! I draw much inspiration from her and love how strongly she feels about representation. Lizzo is also a fat woman with no fucking qualms about her body size! Even if her music isn’t for you (though that is hard for me to believe), her message and her personality are what we really need to see more of in this world, dammit!

I hope more fat women share themselves confidently with the world. Representation is so fucking vital! I hope more retailers, clothing or not, expand their offerings to accommodate and attract fat customers. I want to see an end to fat shaming in my lifetime…and I think it’s possible!

Rad Fatty Love to ALL,

<3
S

P.S. Check out and use the hashtag: #FatAndFree on Instagram & Facebook!

Check out the Fat AF podcast on your favorite podcast app for all things fat sex with me and my BFF, Michaela! (You can listen straight from the web, too!)

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And as always, please feel free to drop me a line in comments here or write me an email, I love hearing from readers. (Tell me your troubles, I don’t judge.): notblueatall@notblueatall.com

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Hello world!

Welcome to WordPress. This is your first post. Edit or delete it, then start writing!

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Why I write so much about immortality, significance, and injustice.

In the past couple of years, I’ve been more active on Twitter than here. But I miss being here. I want to round up my notes and do a little explaining.

What follows are links to threads that seem relevant:

Where I linked Terror Management Theory to diet culture (more) explicitly (than before.) This was the rough draft of the article that later appeared in The Atlantic.

I'm currently knee-deep in assembling research about how "clean eating" and food anxiety is connected to the fear of death. Let's talk.

— Michelle Allison (@fatnutritionist) October 18, 2016

Where I shared my (sketchy and preliminary) thoughts about
neoreaction, politics in the US, and more Terror Management Theory. There was also a Metafilter thread about it, and people said nice things, which is particularly nice for reasons I don’t have the words for…yet. (You know me, it’s only a matter of time.)

I've spent the last year and a half kicking myself for choosing terror management theory as a framework to analyze popular diet culture, not because it doesn't work (I think it does), but because it applies so well to our current political situation that I can't sleep at night.

— Michelle Allison (@fatnutritionist) January 15, 2018

After the van attack here in Toronto, before we knew the motive.

Yesterday, a few streets away, a missing manhole cover in the form of a guy with a van swallowed up ten people. He probably thought he'd feel powerful by causing fear and chaos.

Buddy, fear and chaos are abundant and low in value, and yesterday they made you their chump.

— Michelle Allison (@fatnutritionist) April 24, 2018

And a follow-up.

I feel like I have a thing to say, but it is such an exhausting thing and I have work to do. But it turns out the guy who drove a van through a crowd of people nearby really was a craven and unremarkable misogynist.

— Michelle Allison (@fatnutritionist) April 30, 2018

There are probably one or two more, but they are submerged in the sands of Twitter and it will take some digging to find them.

So, if you’re wondering what the endgame of all of this tweeting about significance and immortality is for me, it’s this: it is my personal believe that no one can do anything that will mark them with lasting significance.

No book, no building, no work of art, no hospital wing with their name on it, no great fortune, not even the destruction of the entire planet will leave a legacy that marks out an individual person as significant on a truly cosmic scale.

Certainly, no amount of hierarchy-building or climbing will do it. (I could go into why, but instead, refer to this standalone tweet.)

Hierarchies are a sad, futile bid for cosmic significance. Reminder to anyone, lobster or otherwise, currently constructing a hierarchy on the throats of others: everything ever built will eventually be consumed by the sun.

— Michelle Allison (@fatnutritionist) May 19, 2018

Now, the explanation.

Many of my young years were wasted by the idea that certain bodies are inherently superior to other bodies. I gave over years of my life to shame because my body was supposed to be bad and undeserving of its basic needs and existence, and as a result, I missed time and life experiences that will never be returned to me.

And I know this is true for many, many people who live caught up in the same hierarchy, under the same system of ideas that certain bodies and certain people are worth less than others, and many, many people have had smaller or larger fractions of their lives wasted more or less violently, as a result.

This bothers me. Which is why I started this website, and why I chose this career.

People who cannot admit their own insignificance or mortality seem to think that spoiling other people’s time by shaming or oppressing them will somehow add to their lives, and while it does succeed in creating misery and even shortening some people’s lives, it doesn’t make the perpetrator immortal or even significant. It’s a fool’s errand, a waste of one’s time, and involves the wasting of other people’s time without their consent.

Life is fragile, short, and precious. The best any of us can do is make our time good and meaningful. We do that by creating things, feeling and experiencing things, and bonding with other people in a way that acknowledges their inherent and unchanging value.

If I can clear obsession with food and shame about having a body out of people’s way so they can get down to living, then I have done a good job. If I can help chip away at some of the structures that unjustly limit people’s use of their finite and precious lives, even better.

In some form or another, I have been writing about this stuff for six years, and thinking about it for twenty-five. I figure why stop now.

As always, the after-party happens in comments. Bring snacks.

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Is It Wrong To Shame Shamers?

Those who mistreat us often try to shield themselves from the consequences of their actions by trying to create a false equivalence between their mistreatment of us, and our speaking out against that mistreatment. So when someone says “Stop oppressing me. You are harming me.” the bigot will try to respond with something like  “Why are you shaming me? What about my beliefs? Where’s your tolerance, huh?”

This is patently ridiculous, but it can still trip up otherwise rational critical thinkers because they DO want to be tolerant, and they DO want to be better people than their bigots. So let me be perfectly clear – “I want to oppress you”  and “I don’t want to be oppressed”  are not two reasonable sides of the same coin. They are not both legitimate viewpoints. Trying to oppress someone is not a viewpoint, it’s an act that harms someone.

Do not let some troll tell you that calling out bullies makes you a bully. Calling out people for harming others is not remotely the same as perpetuating shame, stigma, bigotry, bullying or oppression. Calling out bullies makes you a hero.

This comes up in professional situations as well. I’m commonly asked how to call out fat oppression that happens at conferences, online spaces etc. without shaming the person doing the oppressing. While I’m often willing to give the benefit of the doubt that the person doing the harm is doing it unintentionally, I believe that our primary concern MUST be the well being of the people they are harming, and not the feelings of the person doing the harming.

So the first time I see someone engaging in oppressive behavior – if it’s not blatant and I feel they should get the benefit of the doubt – I’ll take that person aside or shoot them a private e-mail. But if their behavior doesn’t stop, then neither will mine, because they are harming people and I’m not going to sit idly by while that happens. So I’ll continue to insist that they stop harming people, I may enlist other people to do the same, I may start a petition or a letter-writing campaign. The difference between activism and bullying is intent  – bullies intend to harm people. Activists intend to stop bullies from harming others.

This is summed up pretty neatly in something called The Paradox of Tolerance, coined by philosopher Karl Popper in 1945:

Unlimited tolerance must lead to the disappearance of tolerance. If we extend unlimited tolerance even to those who are intolerant, if we are not prepared to defend a tolerant society against the onslaught of the intolerant, then the tolerant will be destroyed, and tolerance with them. — In this formulation, I do not imply, for instance, that we should always suppress the utterance of intolerant philosophies; as long as we can counter them by rational argument and keep them in check by public opinion, suppression would certainly be unwise. But we should claim the right to suppress them if necessary even by force; for it may easily turn out that they are not prepared to meet us on the level of rational argument, but begin by denouncing all argument; they may forbid their followers to listen to rational argument, because it is deceptive, and teach them to answer arguments by the use of their fists or pistols. We should therefore claim, in the name of tolerance, the right not to tolerate the intolerant.

There is a beautiful article by Parker Malloy that further explains the concept and shows how it applies to the current situation in the US.

Basically, the assertion that we have to tolerate people who are actively trying to harm us is best stated as “Please participate in your own (and other people’s) opression by allowing me to oppress you (other people) with absolutely no pushback.” That’s bullshit and you don’t have to prove your tolerance by allowing someone to harm you or others. People are allowed to believe whatever they want. But when they try to turn their personal beliefs into actions that harm you, you have every right to speak up and fight back.

If you’d like some help dealing with trolls – you can check out the Complete Guide to Dealing with Online Trolls.

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:

 Wellness for All Bodies Program: A simple, step-by-step, super efficient guide to setting and reaching your health goals from a weight-neutral perspective.  This program can be used by individuals, or by groups, including as a workplace wellness program!
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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Ketogenic Diets and Lipedema: Apply Caution

Sculpture by Madeleine-Marie Gautier Be smart; do your research before jumping on the ketogenic bandwagon

One of the biggest trends in lipedema treatment world right now is the ketogenic diet. Folks in lipedema communities are all a-flutter over it, considering it practically a cure. There are tons of sessions about ketogenic diets at the lipedema conferences and it's being heavily promoted on lipedema websites and support groups.

I have decidedly mixed feelings about this. On the one hand, I'm a big believer in people being in charge of their own healthcare, and if this is something they want to try, it's okay with me. It's good to consider different therapeutic modalities. On the other hand, it bothers me to see people promoting it so strongly online, as if it is a proven therapy, as if it is a cure. It's NOT.

In fact, we have little actual evidence about ketogenic diets for lipedema, mostly just the word of a few doctors and therapists who believe it is "the answer." We have the stories of some people who are in the honeymoon phase of weight loss on the diet. We have no long-term evidence that it helps lipedema.

What is a Ketogenic Diet?

A ketogenic diet is a dietary approach that promotes a high fat intake and a moderate protein intake, while keeping carbohydrate intake to a bare minimum (no more than 50g per day). In other words, you can have plenty of meats, fats, and low-carb vegetables, but grains, fruits, and higher-carb veggies are not allowed. You can have lots of bacon, steak, and nuts but no rice, bread, pasta, peas, corn, apples, grapes, pears, or bananas, etc.

It's a nutritional plan designed to trigger ketosis in your body. Your body uses glucose for energy, which is largely created from the carbs you eat and then stored as glycogen. If you eliminate carbs from your diet, your body uses up its stores of glycogen, runs out of energy, and needs to find a replacement. So it turns to its stores of body fat and starts consuming them. The by-product of this process is ketones.

Ketosis (ketones in your system) results from the burning of fat for energy when the intake of other energy (carbohydrates) is too low to supply the body's needs. To see if you are spilling ketones in your urine, you can buy testing strips from most pharmacies. You pee on them and they will tell you if you are in ketosis and if so, how much. The aim of the diet is to get you into major ketosis territory so your body will hopefully burn up the lipedemic fat.

Ketogenic diets do very well at producing a quick and very strong initial weight loss. Much of it is water weight but muscle and fat is also burned, leading to more weight loss, at least for a while. Some people report feeling marvelous on it, while others report feeling terrible (the "keto flu"). Sometimes this effect is temporary (the first few weeks) and sometimes it never resolves.

Reservations About Ketogenic Diets

When looked at historically, it can be seen that dietary approaches rotate in popularity. Vegetarian, vegan, alkaline, low-fat, low-carb, no grain, no carb, Paleo, eating "clean" ─ all are dieting/weight loss trends that have cycled in and out of popularity over the years. None show any better long-term results than the others.

If you lower calories, your body will initially lose weight for a while, and then it will slowly adapt its metabolism to the new lower intake and the weight loss slows down and stops, then starts reversing. Sometimes you can overcome these plateaus for a while but nearly always the weight eventually returns, often with friends. There are a few people who manage to sustain large weight losses over many years, but they are statistical outliers, and many do it at the price of eating-disordered behaviors around caloric intake and exercise.

Remember that there is NO research proving improvement of lipedema with a ketogenic diet. Nor is there any research proving long-term permanent weight loss with ketogenic diets. The current push for ketogenic diets is the lipedema and medical community pretending to be size-friendly and pro-health but still exhibiting an underlying diet and weight loss mentality. The paradigm is just too ingrained in them to let it go:

• Sure, we know that lipedema is really not your fault ─ but don't you dare let up on your relentless focus on dieting and exercise or you'll blow up like a balloon! 
• Sure, it's not just a matter of restricting calories ─ but you really should restrict certain toxic foods. If you don't, you'll make your lipedema worse and you'll end up in a wheelchair!

Caregivers and far too many patients are still stuck in the same old guilt/shame/scare/restrict dieting mode, even if they no longer call it a diet. They may call it a "lifestyle change" but it really is just another diet. 

For a while it was an anti-inflammatory diet that was supposed to lessen the effect of lipedema. Now that has started to go out of fashion and it's all about the ketogenic diet. Pretty soon the ketogenic diet will go out of fashion too and something new will be "the" fix. But whatever the latest trendy approach, it's all still dieting, bottom line.

That's not to say that you should just "let yourself go." There's nothing wrong with focusing on healthy habits and nutrient-dense foods. No one is saying that people with lipedema should pay no attention to their health. You don't want to exacerbate the lipedema. But we do need to be cautious not to let that care become part of the Diet Fixation that is so prevalent in our society.

Be especially leery of nutritional approaches that take out entire food groups, that are highly restrictive in intake, that cast foods into "good" and "bad" categories. Foods aren't moral or immoral; they have no value judgment. Some are healthier for you than others, some work better with your particular body than others, but everyone is an individual. Sweeping dietary restrictions don't generally work very well for groups. Moderation and variety seems to be the best keys.

Remember the profit motive of this latest trendy diet. Although the "keto experts" are well-meaning, the patient often ends up paying hefty amounts for advice. And the so-called experts usually spin their approach into a whole cottage industry that makes them all kinds of money. Keto lifestyle coaches abound online these days and have many "packages" available for lifestyle advice. All of it is for a profit. It colors everything they say. Even caregivers who consider themselves neutral often have financial interests in the weight loss industry that influence their views. View everything with a giant grain of salt.

Look beyond the salesmanship, the scare tactics, and the short-term personal testimonials. Ask what real evidence we have on ketogenic diets. Keep asking about this on lipedema groups promoting ketogenic diets and listen to the deafening silence or culture of denial. It's very revealing.

What Does the Research Say?

Bottom line, there does not seem to be any studies on ketogenic diets and lipedema. 

All the claims online about how effective ketogenic diets are for lipedema seem to come from anecdotal stories. A few isolated case reports exist, which are essentially anecdotal evidence too. Although we should not dismiss anecdotal evidence out of hand, neither should we consider such a therapy proven. It's not proven at all.

The ketogenic diet does have some uses in fields other than lipedema. It's important not to dismiss it completely. It was first used in 1920 to help people with epilepsy. It has been shown to be extremely helpful in children and adults who experience chronic severe seizures ─ but perhaps at a price. There seems to be some cognitive decline in young children on a ketogenic diet, but whether that's worsened because of the repeated seizures or whether a combination of repeated seizures and a ketogenic diet makes things worse is unknown.

The ketogenic diet has also been shown in some limited research to be helpful against certain types of brain tumors (glioblastoma). It's not a cure, but it may help at least delay progression. However, although there is lots of speculation and pressure for its use with other cancers, there is no conclusive proof of its utility on other cancers at this time.

A low-to-moderate carbohydrate diet has been shown to improve certain cardiac risk factors in newly diagnosed diabetics, but follow-up is generally only about a year, not long enough to judge its long-term usefulness. Still, it may well lower insulin levels long-term, so that is potentially a benefit to some.

However, while ketogenic diets typically improve triglycerides, HDL cholesterol, and blood sugar temporarily, some data suggests they may worsen LDL cholesterol. Whether that is truly risky or not is unclear.

Furthermore, many people report significant G.I. issues like nausea, vomiting, and constipation with a ketogenic diet. Other potential risks may include kidney stones or other kidney problems, electrolyte imbalances, dehydration, vitamin deficiencies, muscle loss, leg cramps, and decreased bone density. Bad breath, fatigue, and sleep problems have also been reported. While a ketogenic diet is probably not super-risky, neither is it without harm in the literature. Many dieticians recommend against it.

Ketogenic diets get good buzz because there are often significant drops in weight in the first few weeks of the diet. This is largely due to fluid loss, not fat loss. Since women with lipedema often retain serious fluid in their bodies, they can experience really big drops in weight ─ at first. But will it last? As two dietitians note in an article on the keto diet:

"As you limit carbohydrates, your body produces less insulin, and glycogen stores (how carbs are stored) in the muscles and liver are depleted. For every 1 gram of glycogen that's depleted, you lose about 3 grams of water." This causes the kidneys to flush out more water, and along with it, electrolytes your body needs like magnesium, calcium, sodium, and potassium. "Imbalanced electrolytes can lead to muscle cramps, irregular heartbeat, fatigue, cognitive distortions, and lack of body temperature control," Turoff says...

"I wish people knew that the weight loss they will initially experience on this diet is largely due to water loss," Brown says. That means you're most likely not actually losing fat in the first couple of weeks, but instead losing water that will come back in the form of glycogen stores if and when you start eating carbs again.

As far as weight loss goes, a meta-analysis of a number of studies found that ketogenic diets resulted in greater weight loss than low-fat diets ─ but a review of this meta-analysis noted that the difference was only about 1 kg (2.2 pounds), and once the participants reached the 24 month mark, any significant difference between groups disappeared. Not exactly impressive results.

This is typical of nearly all weight loss research. There is an initial period of significant weight loss, lasting anywhere from a few months to around 1-2 years, and then the weight is slowly regained. Often the person regains to a higher weight than their starting weight. The question becomes whether people are better off for having lost the weight and regained it, or if they would have been better off being stable at a higher weight.

Reviews note over and over that a ketogenic diet is generally quite difficult to sustain long-term. Many "long-term" ketogenic studies actually only last 6 months to a year. Drop-out rates are extremely high because it is such a hard diet to follow, and this makes it difficult to interpret what data there is.

Conclusion

One of the trendiest things in lipedema care these days is the ketogenic diet. It is routinely being promoted as a "must try" fix. Physically, it rewards participants with a large quick weight loss, and emotionally, it gives a feeling of control over the uncontrollable. People are glad to at least be doing something in hopes that it will help. It's understandable that it's so appealing to many and has caught on so quickly. But the reality is that it's just another unproven diet fad, cycling around for another turn on the Diet Wheel of Frustration.

That's not to say that the ketogenic diet is never useful. Clearly, it has been very useful in those with serious seizure disorders. But for lipedema? That is completely unproven at this point.

But I'm not going to tell you to not do this diet. You control your own body and your own healthcare decisions. I'm not the Diet Mafia. If you want to do the ketogenic diet, go right ahead. My advice if you try it is to avoid extremism, consult a dietitian so you do it more wisely, take supplements, drink lots of water, and stay flexible. Give it your best shot but don't feel bad if you find it difficult to sustain this diet or if you don't get the long-term results you were hoping for. Lots of other people have had similar issues.

Many people try the ketogenic diet for a while, lose fairly significant amounts of weight pretty quickly, sometimes even from the legs ─ then find the weight comes back no matter what they do. Or they simply cannot live with the extremes of the diet and stop following it after a while because it is so difficult to sustain long-term.

That was pretty much my experience with the ketogenic diet, years ago as a young adult when I was still riding the diet merry-go-round. I lost 50 lbs. on it in six months, but in the end began gaining weight uncontrollably even while still on the diet. Eventually I found it to be simply unsustainable and stopped. I found that after my ketogenic diet, I actually had more lipedemic fat (though I didn't know what to call it then) than when I started, particularly around my belly. That really turned me off of it. It had good initial results but they didn't last any better than any other diet or "lifestyle change" I did. In fact, it made things worse in the long run.

That was my last really big diet. After that, I turned to the Health At Every Size approach and stopped yo-yo dieting. I found I was so much healthier in my food choices, my lab numbers improved, my weight stabilized, and I just FELT so much better, both physically and emotionally. I tried to emphasize more exercise and eat moderately but didn't guilt myself too much about it. Everything in moderation ─ including moderation ─ became my motto.

Some people swear by the ketogenic diet, and if it works long-term for you, more power to you. But stop promoting it as if it has been proven to be a cure for lipedema. It hasn't. It hasn't been shown to result in long-term weight loss either. You can mention to others that you are trying it, you can talk about the pluses and minuses, you can share your experience with it, but please refrain from making unproven claims and stop pressuring other people to try it.

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