Not to get slim, but to be free.
Throughout the coronavirus pandemic, my quality of life has gone dramatically downhill. In the past, I’ve written about how I fear that I’ll soon be facing a future at 500 pounds, but staying home certainly makes it feel like I’ll be getting there faster than ever.
I really hate talking about my fat. I hate talking about being obese. I hate knowing that people will pretty much always judge me by the size, shape, and heaviness of my body. And that many — if not most — people will treat me differently depending upon how my body looks.
Over the past couple of years, though, I’ve also decided to quit apologizing for being fat. I decided I would never once again get involved with a man and have “the talk” about my body being some work in progress. And I was no longer willing to “brace” anyone for the shocking appearance of my legs. The reason is pretty simple — I got sick of treating myself like a monster and taking on the blame for being some monstrosity. Nobody deserves that.
You see, when you’re fat and especially, “morbidly obese,” our world expects you to pay for that. To take responsibility for your so-called weakness. There is also enormous pressure to be a well-behaved fat person. The kind who rarely eats in public and who orders her salad dressing on the side. One who only has eyes for ketogenic diets or otherwise low carb eating plans.
Somebody who eats “clean” 24/7 and who frequently sweats it out at the gym. You’re expected to “prove” your worth through your commitment to pain and discipline.
Trust me, when you’re as “fat” as I am, people call you lazy and undisciplined out of the supposed goodness of their hearts. They go out of their way to ensure that you never feel too entitled about wearing clothes you might like or consuming food you could enjoy because, god forbid you might wind up “glorifying obesity” and somehow lead others into the fold.
As if any of that is actually a thing.
For almost three years now, I have blogged about my experiences as a fat woman in America. You can see from some of the comments just how much certain people care. Strangers on the internet have proudly told me to quit fooling myself about intuitive eating and to start exercising more. Or to stop writing about being fat altogether if I want to be seen as “more than just a fat writer.”
I’ve written many stories about the ups and downs of making peace with a super fat body. About ditching diets and going after food freedom. About trying one new thing after another, but never ending up… okay.
The one thing that’s been remarkably hard to say is that I have a “nightmarish” body, and it’s truly (yes, truly) not my fault. My legs, in particular, are grossly disfigured due to my lipedema — a disease I never brought upon myself. This is hard for most people to grasp when I talk about the fact that I weigh more than 400 pounds, or that my body looks like… this.
Say hello to lipedema. If you were to see me in public, most of you would assume that I am merely “fat.” That I have irresponsibly eaten myself into this blob of a body and that it’s time for a very-low-calorie diet or gastric bypass surgery. Upon seeing this photo, you might even feel a visceral level of disgust and note that I no longer shave my legs and my toenails are ill-kempt.
“Lazy, lazy,” you might think. Others will wonder, “How the heck does a woman let herself go like that?”
In a way, I suppose I have “let myself go.” I no longer wear makeup and rarely contemplate clothes that make me feel “pretty.”
I don’t stay on top of certain things like I used to. Habits such as hair removal, face masks, manicures, or even hair cuts. Of course, a bit of that is related to the pandemic.
But much of it is also about the degenerative nature of lipedema. As the disease progresses, mobility becomes more of an issue. You get out less. You are not able to get out more.
Before the pandemic, I never really knew how much my simple shopping trips and dining out helped keep some troubles at bay. When it’s difficult to be physically active and intentionally exercise for long hours, running errands can help fill in some therapeutic gaps. Now that I rely upon delivery services like Instacart, I’ve felt my mobility go swiftly downhill.
The first thing I noticed was that it became harder to go up and down my stairs at home. Though it’s not impossible by any means, I suddenly found myself putting off a simple trip up the stairs just because I found it so uncomfortable. As time passed, I realized that stepping off the stairs and down onto the living room floor made me feel uneasy and imbalanced.
I’m embarrassed to admit that I’m thinking about buying a cane just to help me better manage the stairs. This decrease in mobility impacts everything I do. It’s become much more difficult to take my trash out or walk through the parking lot to check my mail.
Even picking up my daughter from school has changed. I sort of dread it when she asks if she can go to aftercare, just because it means I’ll have to walk up a hill to go get her — and that’s a lot harder on my legs these days.
I hopped on Facebook and Twitter today to announce my decision. I also began the paperwork for liposuction treatment.
Here’s what I told my Facebook friends:
After several years of many well-meaning (and some not so nice) folks insisting I get gastric bypass surgery to lose weight, I finally made the choice to pursue liposuction. This will be a long and very expensive road. Ultimately, I will be having my surgeries at The Roxbury Institute in Beverly Hills, California.
It's a slightly scary decision, but lipedema is a truly awful disease. And the constant pressure to treat it through diet culture methods (like diet and exercise) is absurd--it's not even a lifestyle disease.
The decision has made me want to be very open about the whole process. I've spent most of my life holding back and hiding my legs out of shame. I think about what my legs used to look like when I was a kid and their size and shape humiliated me. These days, I'd do just about anything to have those legs again.
Instead, I have *these* legs.
It's not just the aesthetics that are problematic. It's the function and pain. Lipedema tissue causes a great deal of constant pain. The skin on my calves feels constantly "on fire." As the diseased tissue has grown, it's become very hard (okay, impossible) for me to walk fast. I feel increasingly unsteady on my feet.
We live in a world that looks at bodies like mine and thinks I don't understand diet and exercise. Or tough love. They say things like, "no pain, no gain." Or, "Keto saved my life!"
In reality, though, keto didn't save me. But I sure went through the pain of it. The same thing goes for 1200 calorie diets, 800 calorie diets, anorexia, and excessive exercise. Those things were all painful. Hitting the treadmill for two hours a day, seven days a week led to terrible blisters on my feet but I did it anyway. So, yes, I know pain and tough love. I've picked both. And no, I didn't gain what I needed from those experiences.
I never did.
This is very hard for other people to understand, I know. The standard response to legs that look like mine is the assumption that I have brought it all upon myself. But that isn’t how lipedema works. People don’t get lipedema because they made poor lifestyle choices or "let themselves go." Lipedema is a progressive disease that’s regulated by poorly understood hormones and it typically flares up with significant hormonal changes like puberty, childbirth, and menopause.
Lipedema is a fat disease, but it isn't normal fat. And it isn't the sort of fat that can be "burnt" through diet or exercise. Liposuction is literally the only way to remove lipedema fat from the body.
So, that's what I've decided to do.
Part of the reason I decided to start this liposuction journey is that I’m so sick of my life in this body. You see, about a month ago, a fellow writer wrote up a particularly nasty article about me. In it, she accused me of being selfish, out-of-touch, and many other terrible things. She claimed I’d written a story bragging about my income and then misconstrued my actual earnings.
She didn’t just criticize me, my character, or my writing. She also took the time to mock me for writing about some of the stress in my life. As if I don’t know anything about stress after a lifetime of poverty and life with lipedema. As if I’m some sort of cry baby to even admit that my work as a single mom and writer sometimes stresses me out.
While she was mocking me for my recent stress over picking up my house in the midst of my overwhelm from the pandemic, I suppose she didn’t know that part of the reason it’s so difficult for me to pick up my house is because of my lipedema. And maybe she didn’t realize that she was openly mocking a person with a real disability.
Perhaps she doesn’t care. For all I know, my critics really do believe that making a decent income as a writer online — for the past two years — has somehow made my stress and pain disappear. It hasn’t, of course, but that’s okay.
I suppose I should actually thank this person because their caustic words actually got me thinking about the life I want to live. And that’s when it really hit me that I don’t want to be housebound. I don’t want to lose my ability to walk in a few years. I am already in constant pain and I haven’t been able to kneel on the floor since… 2013.
Does that mean you should feel sorry for me? God, no. Please don’t. Some of the most uncomfortable comments I get come from well-meaning people who pity me.
What I really want is to be treated like a freaking human being. Not some hideous monster, and not some silver-spooned elitist who’s never seen a day of adversity.
Because, to a certain extent, it’s very easy to hide behind the internet and live my life online. In fact, I could spend the rest of my life ignoring my lipedema and pretending it doesn’t impact me. I could pretend I live a charmed life with pastel pink hair and a completely “straight-sized” body. I could pretend to be happy whenever I am dying inside.
I could lie for a living and tell you that achieving your goals is just a matter of embracing tough love, and telling yourself, “no pain, no gain.”
Instead, I give you anything but flawless. I give you the messy bits of me. I write about my inability to lose weight without gaining more back. Or my failure to fully love my body when it looks like… this.
It’s painful to reveal the “real” me. Painful to talk about the fact that lipedema is not just a cosmetic issue but a disability too. It’s so dang frustrating trying to explain to people how I’m fighting an uphill battle here. And I’m sick of buying all the crap.
You might not want to believe it, but I don’t need weight loss surgery or even another diet. I didn’t eat my way into these stiff and painful legs.
I am living with a disease. A legitimate disease that too few people care about because it’s easier to write it off as a personal choice and moral failing. There’s very little money given to any sort of fat research that doesn’t line up with our cultural phobias.
And I’m done beating around the bush about it. I’m done pretending that diet culture is going to save me. I am finally determined to make choices that suit me without fear or shame.
I don’t have all of the details lined up. I definitely don’t have all of the money that I need. But my god, this is going to happen. I am going to move with more freedom and less pain, no matter how long it takes.