We’re bombarded by so much conflicting information as we try to figure out what to eat to manage Lipedema. Anti-inflammatory, RAD, carnivore, vegan, alkaline, low fat, high fat, plant-based, AIP, keto, paleo, intermittent fasting? Should you give up all grains, alcohol, sugar, dairy, fruit, nightshades, and then all the things that make you have some weird reaction that seemingly no one else on the planet has? There are questions about when and what you should eat and while most people have very strong opinions, those strong opinions conflict. Today, I’m asking a question that isn’t asked. Are you eating enough?
If you’re like me, you look in the mirror, at this body that’s betrayed you, and the answer is, “Eating enough? Have you seen my butt? My thighs? Do you KNOW how much I weigh? Isn’t it obvious that I’m eating enough?” Still, those of us who have battled weight for so long and tried EVERYTHING to lose it need to stop and think about this question.
American and German researchers have noted that those with lipedema are at risk for developing eating disorders due to this quest to lose weight and the psychological toll the constant struggle takes, as well as the repeated feelings of failure and being told you’re just not doing it right or doing enough. The Standard of Care for the US states, "In a study of 100 people with lipedema, 74% had a history of eating disorders, 12% with periodic binge eating attacks, 8% with bulimia, and 16% with anorexia nervosa". I found myself in a cycle of eating less and less and less over the years, even before I’d ever heard of lipedema. I couldn’t lose weight and everyone from my hateful ex husband and mother, to doctors and weight loss experts said one thing. Calories in, calories out. If you’re not losing weight, eat healthier and eat less. So I did.
I had been seeing a naturopath I trusted for a variety of health issues for a lot of years. She knew that I had long since cut out sugary drinks and most sugary foods, and that I ate only organic, healthy, unprocessed foods. Then one day she realized as we talked that I was barely eating all of these healthy foods, sometimes not eating at all. She asked me to keep track of my calories for two weeks and what I found shocked me. I was struggling to eat 800 calories a day, and I had been eating that or less for the past 10 years. My graduate school work was in psychology, so I knew what 800 calories meant, even though I’d been in denial about having any type of eating disorder for a long time. It meant that my calorie intake was at anorexic levels. Can you be overweight AND anorexic? The short answer is yes, even though that is definitely not the stereotype we’ve all seen.
To help me regain nutrition, my naturopath put me on a 5000 calorie a day, nutrient dense diet for six weeks (normal protocol for anorexia) and to my shock, I didn’t gain a single pound, but I did gain energy and various health problems I’d been having improved. She said something I’ll never forget when I went to my next appointment, “You need to understand something. Really understand it. It isn’t now, and it has never been, anything you’re doing that is making your body not lose weight. You know that 5000 calories a day should make you gain weight and eating less than your small child should make you lose. You need to stop blaming yourself and start eating to heal. Give your body what it needs, because you’ve just proven to yourself that no matter how much you eat or don’t eat, for some reason, your body isn’t losing this weight.”
I share this story that only two people in the world know, because the struggle to lose weight is the focus of our lives with Lipedema. Yes, it’s lovely when our pain is less, when our mobility improves, when our quality of life is better, but honestly, we’re still looking in the mirror and at the scale and the tag in our jeans to determine if we’re really winning the battle against this disease, often to the detriment of our bodies. A malnourished body cannot be healthy. It cannot heal. It cannot fight against the disease that we’re dealing with. We don’t encourage constant calorie counting in our group, and I don't encourage it with clients, but for me, at least temporarily, it was a useful tool.
Today I encourage you to step back for a moment and think about what lengths you’ve gone to so your hips won’t be as wide. Even if your first thought is what mine used to be...eat enough? That’s ridiculous. Keep track of how much you’re eating for a few weeks and compare that to normal, healthy adult portions (NOT jumbo fast food portions, of course!). Part of learning to care for yourself and part of eating the right foods for health and managing lipedema is eating enough of those foods to nourish your body.
*This is my personal story and is not meant to replace the advice of your doctor or nutritionist.
Case study on the subject by Dr. Karen Herbst: https://www.amjcaserep.com/abstract/index/idArt/930840?fbclid=IwAR3fTXh1VJWS6n6iryk_oEkyF-i5wVTFJN1C21gwtZa0z7oaFHsUmldpvfE
This was first written for the Facebook group I admin in 2020: https://www.facebook.com/groups/CherylsLipedemaJourney