Shame and Fear Cannot Fix My Fatness

But I keep getting it in the form of "motivational" advice.

Photo by Gage Walker on Unsplash

My highest weight during my pregnancy was 325. All in all, I gained about 25 pounds with my daughter. When I first met her dad, I weighed 285 pounds and looked like this:

Me in 2013.

There are two things that most people can’t see from that picture. First, how freaking hard I worked just to get down to 285.

My weight loss "before and after" back in 2013.

Second, how so much of my fat beneath my clothing was actually lipedema fat.

Lipedema fat is different than obesity fat, but that doesn’t make it any easier to wear. It is estimated that more than 17 million women in the US alone have lipedema, but most people have never even heard of the disease. Far more people are aware of PCOS (another disease I have), despite it being much less common. About 5 million women in the US have polycystic ovarian syndrome.

Lipedema is an adipose disease which creates unsightly arms and legs due to the growth of abnormal fat cells.

What makes lipedema fat so shitty is the fact--yes, fact--that diet and exercise cannot touch it. The only known near “cure” to remove lipedema fat is water-assisted liposuction. And no, insurance doesn’t cover it.

There are other treatments for lipedema to manage pain and inflammation, but most will be out of reach for patients who are not wealthy, or for those who don’t even know they have this adipose disease.

As a woman with lipedema, I am painfully aware of how quickly the disease is overlooked or dismissed by doctors, and it has contributed to my extreme distrust of western medicine. The single reason lipedema goes undiagnosed and ignored is the simple discrimination of fat people.

When people hear that I weigh 400 pounds, and when they see… this?

That's a lipedema "cuff" at my wrist.

Well, many people including physicians see me and think I look like a whale or a pig. And, often without realizing it, they treat me as if I am less than human.

Truth be told, I really hate sharing that picture of me. Photos like that--taken while I am unaware--feel remarkably intrusive.

But to be fair, at this weight and in my 2019 body, I am still wary to share a selfie taken with the best angle in mind:

Me, yesterday.

I feel ugly. Incredibly gross. But I know that’s largely due to the fact that enough people treat me with shame and derision as soon as they look at me.

I am not a person to many people in this world. I am instead, a cow. Or a monster. A beast. And as a woman? Beastly is about the worst thing you can be.

Fat is failure.

So many people in this world can see only fat, and that is how a disfiguring disease impacting 17 million American women goes largely unknown.

And I cannot for the life of me, figure out how to come to terms with that.

As I’m writing this story from my phone, I am lying in bed with my daughter who is still sleeping. Next month, she turns five, and I can’t help but be reminded that my weight has been such a growing challenge. For five years.

My weight during pregnancy felt manageable. Yes, I had preeclampsia and gestational diabetes, but slim women get those things too. And I easily monitored my blood sugar through diet alone when I was pregnant.

It wasn’t until after I gave birth to my daughter that all hell finally broke loose.

For one thing? The pain, the isolation, and overall struggle since giving birth put a wound in me... and I don’t know that it will ever heal.

Becoming a mother is the hardest, most rewarding thing I’ve ever done. And… it is also the loneliest experience of my life.

This is not some fleeting loneliness. This is more than 5 years of pain and hardship and “sucking it up” just to get to the next day.

And yet?

It’s not only emotional. It’s not just my mental health or lack of family and connection.

It’s also lipedema.

This disease is so easily identifiable, yet it goes unrecognized. And worse yet, it flares up in times of great stress and hormonal change. That means for many women with lipedema, it only gets worse after pregnancy.

I feel it. God, I feel it. When I walk, I feel the telltale lipedema “cuff” take up space between my ankle and calf. I don’t have cankles--I have cuffs and they feel terrible. My legs are stuffed within their own skin and finding appropriate pants is a misery.

But how the hell do I relay the pain and reality of this disease in a way that anyone will take seriously?

For a few years, I have wanted to take photos of my legs to help bring a little more awareness of this disease. But I’ve been chicken shit. I already feel like a monster, and I have spent the past 25 years covering up these calves as best as I can.

My calves, this morning.

This is lipedema. This is the disease they call fat. The disease they don’t talk about because it’s so much easier to tell us that diet and exercise will make us slim and proportionate.

Lipedema legs cause eating disorders. Along with the doctors and members of society who refuse the entertain the notion that what you see is never the whole story.

They see fat. As in a lifestyle disease, but that isn’t what lipedema is. None of us have “brought this upon ourselves.” You don’t get lipedema because you’re fat. You get “fat” because you have lipedema.

I have learned that the hardest thing about revealing my thoughts on this disease and my disordered eating is the way some people react. Especially from those who (I think) mean to be helpful.

Today I read a comment from one of those folks. They told me that my daughter is going to grow up embarrassed for me. They said other things, of course, but the part I will always remember is right there.

My daughter will be embarrassed.

And that’s what is supposed to give me the motivation to change. Not hope, but shame. Not love, but fear.

People who say such things might as well say to me, “If you really love your daughter, you will stop eating altogether.”

But you see, this isn’t about being helpless. I have never claimed to have zero control over my body.

I do, however, have an extremely different set of circumstances compared to those trying to use shame me to motivate me. And I’m tired.

At 36-years-old, people have been trying to use shame and fear to make me “see the light” for as long as I can remember. What do you think? That hitting me harder will finally create results?

Despite every one of my shortcomings, I have fought like hell for my daughter. My crisis pregnancy and partner’s departure left me with nothing. No money. No job. No home.

Plus, I battled suicidal ideation daily for more than two years that began with prenatal depression.

Everybody thought I was crazy because, from that position of having nothing, I decided I was going to work from home and keep my daughter out of daycare. That was something I had to do to be the mom I need to be.

So I dropped everything for unplanned parenthood. For single motherhood. I did what my daughter’s dad would not do. Actually, I did what a lot of people would not do. I put my whole life on hold.

And it’s not like that’s so freaking amazing because I’m some amazing person. It’s just that I knew what kind of parent I wanted and needed to be, so I have focused on that.

And when people come along and try to shame me into fixing my fat ass so my daughter won’t be embarrassed?

I can’t help but suspect that they need an education in lipedema, mental health, and even empathy. I already am thinking about my daughter. I already do worry about every awful potential scenario and how it might impact her.

Yet, no amount of shame, guilt, or fear can take away the fact that I have lipedema and an eating disorder.

A certain diet cannot fix me. Exercise will not cure me. Gastric bypass is not even recommended for lipedema patients without the care of a lymphatic drainage specialist since the surgery increases our risk for lymphedema.

My weight loss efforts point to a remarkably uphill battle after pregnancy and delivery, and I don’t say that to whine or shirk responsibility. I’m in stage 3 lipedema, and that’s pretty damn scary. It means something.

My goals are to first get my disordered eating under better control so I can lose whatever fat I have that isn’t lipedema fat, and then have liposuction and skin removal surgery if needed. It’s going to take a helluva lot of work and money to feel okay.

And I’m doing my best to get where I need to be.

But I know--it’s easy to think you’re helping motivate a fat person to lose weight when you dole out advice, but I know from experience that the only way to truly help is to educate yourself and have some damn empathy. Women with lipedema don’t need your pity, your dirty looks, or shame-colored “encouragement.”

What we really need is to be seen as people rather than freaks or monstrous animals. We need to be taken seriously.

And we need to know that there are still people who see our value and are not afraid to love us. Because where you only see fat? That’s a fucking human being.

Don't be so blinded by fatphobia that you can't see the humanity of our bodies.