The rarely diagnosed chronic disorder affects mostly women and causes fat cells within the body to build up and harden instead of burn; it's often confused with obesity or lymphedema.
As a result, many people living with lipedema don't know they have it. Or, in Brena Jean's case, she recognized the condition but struggled to prove it to medical professionals.
This week, Brena Jean and I discuss how she's taking internet trolls to school and what it means to fight fatphobia within the American healthcare system.
Below are lightly edited excerpts of my conversation with Brena Jean.
Brena: I got picked on a lot and I got teased a lot. I even got bullied at home. My parents looked normative, their bodies didn't look like mine. My mom -- who I'm pretty sure I got lipedema from -- was a small person with lipedema. She had a small body. But my body just seemed to just grow and grow and grow, no matter what I did. I was on a lot of diets. I was put on my first diet when I was a child. I did Slim Fast when I was a child and never stopped dieting. I even had an eating disorder for a while... But my weight would fluctuate at the most about 40 pounds.
Brena: It wasn't just my size, it was the shape of my limbs. I have rolls that people just stare at. They also assume, 'Well, maybe because she's so fat those rolls appear there.' What I later learned [is that those rolls] are called cuffs, which is common with lipedema.
Brena: ... surgery removes the lipedema nodules and reduces the pain and reduces the size of your body, but that's not necessarily seen as a cure by medical insurances... I still don't know actually how many procedures I'll need. And I'm not even sure when they'll start. But when I've talked to doctors, the majority of them are like, oh, this is a whole reconstruction. It could be one to two years. And I don't know how I'm going to look, but -- just like I've learned as a person with a fat body -- I'm going to love me wherever I'm at.
Pen: And we can't glaze over the fashion. Can you explain a little bit of the fashion for me? We can’t get past that point.
Brena: So funny... I like to dress up. I like to feel good. My parents are from the South... And they are two Black people that are unmistakably Black. They come from an era where you have to stunt, you have to show up and show out or else you could possibly be mistaken for someone with insidious intentions.
Brena: I like to show up and show out as well. I want to be confident and I don't want to have to hide my body anymore. And to do that requires a particular type of suiting up. I have to be prepared to take on other people's response to my body and to my appearance. I think that's what my parents did. They suited up for white supremacy. [laughs] I suit up for white supremacy and fatphobia, you know?
Pen: You’ve talked about fighting the medical system and your own insecurities. How are you fighting perceptions on the Internet or even internet trolls?
Brena: ....I don't think everybody should do this. I'm just a masochist but I like to respond to the trolls’ questions... I don't think they expect a response. I don't think they expect to be heard at all. I think that's why they're trolling. But I respond with a whole video response and then a lot of times I convert them over on my side. There are trolls rallying for me right now.
Brena: You're not going to troll me as bad as the systems do. I'm from Oakland. I know real trolls, ain't nothing control you like white supremacy, right?
Pen: Put it in perspective, right...
Brena: I used to be a teacher, if I can take how engaged people are in that rage and give them something of value, like a real answer and a real truth at least while they in that valley of rage, they can come out with something... So far, I haven't been attached to what's in the comments. I find there's an opportunity there to educate folks, even the trolls. Oftentimes what I have found out [is that] they're often angry with the same systems I'm angry at. Everybody's affected and harmed by these things. Everyone, including you, are affected by fatphobia.
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