You're listening to Burnt Toast. I'm Virginia Sole-Smith and I also write the Burnt Toast newsletter.
Today I am chatting with Linda Gerhardt, who blogs at Fluffy Kitten Party and posts on Instagram as @littlewingedpotatoes. Linda is someone I have learned so much from over the years about Health at Every Size and fat activism and fat liberation. This is not her day job, it’s just something she is super smart and passionate about. And she does a ton of free labor for the fat community and the HAES community, sharing information and her experiences and expertise.
Recently, Linda has been talking more about her experience as a chronically ill fat person living with lipedema and lymphedema. This is a conversation we aren’t having and we need to be having.
I think this conversation may challenge a lot of what you thought you understood about a concept like medical weight loss. It may also challenge a lot of what you thought you understood about a concept like HAES and how our current model for activism is failing a lot of the people it’s supposed to help. And I suspect wherever you land on that spectrum, it may also cause a lot of us to recognize biases, we didn’t realize we were still hanging on to about weight and health. And that’s good, because now we can do the work and we can do better.
Oh, and we also talked quite a lot about kittens.
CW: We do discuss medical fatphobia and trauma in a fair amount of detail. We also discuss prescription weight loss and weight loss surgery. If any of that sounds not right for where you are today, cool. Come back next week!
PS. LOVE this update from The States Project on our effort for Arizona:
Arizona-focused Giving Circles (including Burnt Toast!) rose to the occasion and raised over $50,000 in 8 days. Read more about the details of why we must do that here. Our Regional Political Director Justin Perez says that our newly-endorsed write-in candidate in Senate District 22, Eva Diaz, “was at a loss for words” when she heard we were here to help. Justin called her while she was in her classroom, she’s a school teacher, and he could hear little ones in the background. “She couldn't really comprehend that we were supporting her at this level.” Thank you.
So yes, let’s get this awesome public school educator elected to the AZ State Senate so she can fight for gun reform and abortion rights and more! We’re still a few grand away from our Giving Circle’s goal of $30K and only have until October 17 to close the gap — join us here?
Episode 64 Transcript
Virginia
Why don’t we start by having you tell people a little bit about yourself and what you do?
Linda
My name is Linda and I run a blog called Fluffy Kitten Party, which I chose because I couldn’t find a domain name that was allowed and available, so that was what I chose. I haven’t written in it for a while, but on that blog I wrote about fat liberation and Health at Every Size and my own experiences within the health care system.
I also have an Instagram account, @littlewingedpotatoes, which is a Mystery Science Theater 3000 reference, for anybody who’s curious. That was another desperate choice when I couldn’t find a name and everything I tried was taken. I post a mix of memes and personal nonsense and fat liberation health and every size content. It’s a real grab bag, but you can always follow me there if you’re curious about what I do.
This isn’t my full-time job, I have a full-time job doing something completely different as a consultant. I’m just a fat lady who’s really invested in fat liberation and Health at Every Size. I need it. And so I share my story, and my experiences and my thoughts and feelings and opinions in the hopes of moving things along.
Virginia
I just want to say right now, anyone who’s not already following Linda, please follow Linda, because just there have been so many issues over the years. I think you’re the first person who taught me about terms like “small fat.” You’re doing 101 stuff for those of us who need it.
Linda
Thank you. The real feather in my cap is that I am one of the top search results for “Fat at Disney.” I will rest on that for quite a while, if not my whole life.
Virginia
How much higher can one fly?
Linda
It’s the dream.
Virginia
Today we are going to talk about lipedema, which is a condition you have been struggling with for many years. But you’ve only recently gotten properly diagnosed and started talking publicly about this.
Linda
Hindsight is 20/20 and having the diagnosis, I can look back and reconstruct when it started for me. I was a thick, chunky kid, but at puberty, I got really lumpy. Like, I was hoping for boobs and I got giant thighs and a fat ass instead. I was like, “Well, that kind of sucks.” I looked around at my peers and I’m like, “Yeah, I’m lumpier than you guys. I’m shaped very differently.” But I just kind of carried that and lived my life.
It wasn’t until I was in my mid 20s, I was working as a photographer—very active job, lugging equipment up and downstairs, setting it up and taking it down multiple times a day—and I started to have problems with swelling and pain in my legs. And just for context, I was a baby photographer. So this involves getting down on baby level. I spent 20 to 30 minutes at a time on my knees without any real issue. So when I started having this pain and swelling, like first of all, this could affect my livelihood if I can’t kneel anymore. I went to the doctor, and they were kind of like, "Huh, well, your legs are really weird. They’re kind of firm and full of fluid, but we don’t know what that is. But you should probably just get weight loss surgery.” So I ended up at a weight loss surgery seminar. Went through a few beginning steps of getting weight loss surgery, but ended up not getting approved because I had terrible high deductible pre-Affordable Care Act insurance.
So I was kind of saved by my bad insurance. So I just said, “Okay, well, I’ll just keep living my life and do my best.” Then in my early 30s, I started getting a lot of pain right underneath my knees. I had developed this pad of fat, for lack of a better term, that was on both sides, so symmetrical, and just extremely painful. If my little eight pound cat placed one paw beneath my knees, I hit the ceiling. It was like somebody was stabbing me.
Pain is normal to some degree in life but legs that are throbbing with pain all the time is not quite normal. So, I started the journey of going to different doctors and saying, “Do you have any idea what’s going on with me?” Didn’t really get anywhere. I had many, many scans done of the veins in my legs. Veins are healthy. Ruled out things like congestive heart failure. And it was actually really frustrating because it’s great to be healthy, but when you’re in pain and you know something’s wrong, when you get that clean bill of health, it’s really frustrating. I didn’t have a lot of those metabolic issues that doctors were looking for. They didn’t know what to do with me.
Virginia
Meanwhile, you’re still in pain and you have no answers as to what’s happening.
Linda
Yeah, and my mobility decreased. It had really inhibited my ability to do a lot of things because my legs were heavy and painful and swollen. A friend of mine, I was complaining to her about my sore legs, and she said, “Have you ever heard of this person on Instagram? She has painful legs and looks pretty similar to you.” So I follow the link that my friend sent me and I went to this woman’s Instagram. And it was like running into a wall because this woman had my body.
Her legs looked like mine. And she had a condition called lipedema, which I had never heard of. This was I think 2018 or so. And so I started researching lipedema like, what is this? Is this lymphedema? I didn’t know anything about it. And as I was looking at the description of the condition, I thought, Oh my God, this is me. This is what I have.
I started this process of going to doctors and being like, Have you heard of lipedema? I think I might have it. And either they had no idea what it was, or they were just like, “eh probably not.” Because there is this misconception about lipedema that it only is present in thin women who have large lower bodies, which is not the case.
Virginia
Oh, so it was like, they only diagnose it in someone they don’t expect to be fat.
Linda
Precisely. That’s it on the nose. I’m kind of fat everywhere and that’s how I’ve always been—like I said, I was a chunky kid, I was a chunky teenager, I’m a chunky adult. And so they would think, “Oh, well, you can’t have that because you are fat elsewhere.” And I thought, oh, okay, well, maybe I don’t have it. But you know, I just I had it, I knew I had it.
Eventually I found a doctor who specializes in lipedema. He’s a surgeon and he was able to diagnose me on sight because lipedema has a very characteristic look. You can see it on people’s bodies. You can also feel it, because the texture of the fat with lipedema is not normal. It kind of feels like marbles. Which are these nodules. And some of those nodules can get extremely large. So when I was 13 and saying, “Hey, I’m so much lumpier than my peers,” that was a big part of it.
A lot of things clicked into place once I had a name to call it. But the bummer is that there really isn’t much that can be done for lipedema, because doctors, especially in the US don’t really know a whole lot about it. As a condition, we’ve known about it since the 1940’s. But it’s still kind of a mystery and if you went to your family doctor and wanted to talk about lipedema, they would probably have no idea what it is. I’ve heard of people going into their doctor’s office, telling them to Google Images of lipedema and then the doctor goes, “Oh, well, you absolutely have that.”
Virginia
That is wild.
Linda
It’s been interesting to see the gaps in medical knowledge among medical professionals. It’s kind of the saddest club because you have a name you can call the thing that you experience, but nobody can really help you in any significant way. There is help available. But it’s very tricky to get because this is all very new and experimental and nothing is really evidence based at this point because people are not interested in helping lumpy fat ladies.
Virginia
So just to do the 101 thing for all of us who are learning here, let’s just say what lymphedema is versus lipedema and how they’re related.
Linda
So lymphedema is something that you’ll often see in people who have had cancer and have lymph nodes removed, where the lymph fluid—which we all have, it’s just this waste fluid that flows through our cells—is pooling in a particular area. So, in lymphedema, somebody will have like one arm, typically, that’s very large and swollen and painful, or a leg. And in lipedema, it’s all over and it’s slightly different.
How lipedema works: It’s believed to be hereditary, so your genes are kind of a loaded gun and hormones are the trigger. So a lot of women will start to see symptoms of lipedema at puberty. And then if they get pregnant or start birth control, that can kick it into high gear. A lot of women who have lipedema, notice it after a pregnancy. I noticed it after starting Depo-Provera. People gain weight on Depo-Provera, but I gained a significant amount of weight on Depo-Provera. And that was around the time I started having the symptoms that worried me, like the pain under my knees.
All of us have fat cells that are moving fluid in and out all the time—that’s how our cells work. With people who have lipedema, the cells are letting fluids in and not cycling them out fast enough. So these fat cells are just full of this garbage fluid that your body is supposed to be getting rid of. And it causes pain, it causes swelling.
And one thing I did want to note because I keep saying women, lipedema affects almost exclusively women and people assigned female at birth. I haven’t read any cases of cis men with it. Lipedema is hormonal and lives in this cursed intersection of medical fatphobia and medical misogyny. Because people aren’t interested in learning how women’s bodies work.
Virginia
No, nope, definitely not. Or including them in medical studies until like 10 years ago.
Linda
So these fat cells that are holding onto fluid, it can cause overgrowth of fat. It almost kind of spreads and builds upon itself. So that can cause compression on your lymphatic vessels in your lymph nodes and that can cause lymphedema. Later on when you have widespread lymphatic dysfunction—which is where I live right now, I have leg lipedema and I also have a mild case of lymphedema that is nonetheless very painful and annoying in one of my legs. That is called lipolymphedema, which is the final stage of lipedema. And it’s hard to deal with, medically, because you’ve got two things going on. You’re full of fluid and nobody wants to work on you.
Virginia
This is a lot you’re dealing with. I just want to take a minute and say, as someone who considers you a friend, it’s been really tough to watch how much you’ve had to struggle and it’s really fucking unfair.
Linda
Thank you. I appreciate the support. Just hearing that it’s unfair is really helpful to me because it’s the barriers to getting help are really significant. There’s not a whole lot of help available because, again, people don’t understand what it is, which I think is a travesty in and of itself. If I were an ob*sity researcher, I would be interested to find out what’s making all of these fat ladies so lumpy and miserable. Like, why are they in pain? Why are they lumpy? Why is their fat different? What is going on?
I think it’s really fascinating. And there just isn’t really much research. The treatment options are limited. I wouldn’t even call them treatment, I would call them symptom management. Compression is the frontline treatment. Wearing compression garments, pneumatic compression pumps.
Manual lymphatic drainage massage has been a life changer for me. It kind of gets that lymph fluid flowing and helps with pain and swelling and kind of loosens you up. It’s actually really wild, I’ll walk into a massage appointment and my shoes and pants will be tight. And I’ll leave and my shoes are loose and my pants are loose.
Virginia
Wow. So over the course of the session you really see a difference.
Linda
I can feel the lymph moving. It’s very strange. It’s almost like water trickling inside your body.
Virginia
Whoa. That’s intense.
Linda
It’s it’s a little weird, but now I look forward to it. I need it every every couple of weeks—ideally every week, but it’s not covered by insurance.
Virginia
I was going to say that sounds expensive.
Linda
It’s definitely expensive.
Virginia
You’ve talked a little bit on Instagram about looking into surgical options.
Linda
Yeah, at this point the major surgical option is liposuction. This is not normal, healthy fat, this is abnormal—I don’t want to use the term “diseased,” but it’s not healthy tissue. So removing that tissue also removes a lot of the pain, the nodules that cause that immediate sense of “oh my god, don’t touch me.” And there’s a network of surgeons, they’re not affiliated with each other, but they are plastic surgeons who perform liposuction on lipedema patients. It is different than standard liposuction because you’re not looking for aesthetics, you’re basically looking to remove as much lipedema fat as you safely can so that the patient experiences relief. I’ve heard of people getting liposuction who say that they feel better being wheeled out of the surgical room than they did going in, even though they come out with drains on.
Virginia
Right and recovering from anesthesia.
Linda
But again, your insurance isn’t likely to want to cover liposuction because people hear liposuction, they think, Oh, that’s cosmetic. That’s optional. And a lot of the plastic surgeons are frankly used to being able to pick and choose their patients and not operate on people that they don’t want to operate on. So, especially for larger patients, it can be a real difficult process to find a surgeon who wants to operate on you, especially if you also have lymphedema, which is another complicating factor.
So that’s been where I’ve been looking into getting help and finding door after door getting slammed in my face. But that’s one of the treatment options that’s available. It is considered experimental because there haven’t been any longterm peer-reviewed studies. There has been some preliminary research into it. Dr. Karen Herbst is one of the researchers who has been really proactive about publishing research papers about lipedema. She also published [a paper called] The Standard of Care for Lipedema in the United States. But this is all really new. It’s kind of the wild West. And in terms of treatment, gosh, if you go into a Facebook community for people with lipedema, people are just gonna scream “keto” at you until you leave.
Virginia
So I want to get into the keto of it all in a minute, but on the surgery piece: Listening to you talk, I’m just thinking about what a disservice doctors are doing to patients here. Because plastic surgery has become this specialty that we associate with aesthetics, right? We associate it with nose jobs and boob jobs and lipo for thinner thighs. When it should be very focused on treating conditions like yours and things like burn victims. But because diet culture, because beauty culture, etc, the money for this specialty is not in helping lumpy fat ladies. The money is in doing it in this other way. And I’m just thinking about how much that has distorted the ethics of that entire specialty, but also your ability to access care.
Linda
I mean, plastic surgeons do a lot of non-cosmetic procedures. I would say most of them are trained to do things like help babies with cleft palates, and help people who have skin issues and injuries that require resetting bones and that kind of intense surgery. But people hear liposuction in particular, and they think of the only utility as making a person thinner for purposes of vanity. Literally, my legs could look like hamburger meat and if they didn’t hurt, I would be fine with that. They could give me like wooden pirate legs and I would be fine with that. The reason I want this surgery is not because I want to be smaller, I’m just looking for relief from this condition that is causing widespread lymphatic dysfunction in my body. And that’s it.
I think there’s also this issue of capitalism within the doctors who treat lipedema. There’s a lot of marketing. They’re all in private practice. So some of them don’t work with insurance at all, right? And they’re looking to market themselves, so they’re also looking at a patient and saying, “will this give me a good before and after picture that I can put on social media?” And my legs are probably not gonna be beautiful after surgery. I just want them to not hurt. I want them to function.
Virginia
And how bananas that this is not a success point that a surgeon feels like would market his or her practice effectively? And is it your impression from being as active you are in the lipedema community, that the thin woman with the bigger lower body, that she is more able to access this treatment than someone like you?
Linda
Oh, 100 percent. I’m in a couple of communities online for people who are pursuing or have had or will get liposuction for their lipedema. It’s much easier for thinner patients not only find surgeons who will happily operate on them, but to get insurance coverage. Because that’s sort of the new frontier, is getting your insurance company to actually cover all or some of the procedure. And it is sequential, so typically for people with lipedema, we’re not talking one and done. We’re talking five, six procedures, possibly things like thigh lifts and skin removal, because it really can be disfiguring in a lot of ways.
Virginia
I was wondering if there was recurrence. I have endometriosis and I had surgery to remove all my endometrial cysts, but my body keeps making more endometrial cysts. They can remove the current issue, but they can’t turn off the problem completely.
Linda
Exactly. It’s exactly like that. So if you have liposuction for lipedema, you’re not looking for a cure. You’re just looking to improve your quality of life in the short term or the long term. It’s hard to say because there haven’t been many studies. Anecdotally, people can see it come back in other areas. I’ve heard of patients saying, “Okay, my abdomen is growing lipedema now, now that it’s been removed from my legs.” So it can recur. It’s really just sort of the last hope for people who are in a lot of pain and want to have some option to live a normal life, even if it’s just for five years after surgery.
Virginia
I mean, that’s huge.
Linda
It’s definitely not a cure because, frankly, we don’t understand why it happens. And until somebody is curious enough to investigate that question of why this is happening to certain people and what is kicking it into gear, how can we slow it down? How can we stop it? There’s not really anything that we can do significant for people with lipedema, aside from manage those symptoms and try to provide a decent quality of life and mobility for as long as possible.
Virginia
I’m just filled with white hot fury right now. Because it is, as you said, this intersection with women’s healthcare in general. How little we understand endometriosis, how little we understand migraines, how little we understand PCOS, all of these conditions that, like lipedema, we have known about for decades. And yet, because they primarily happen not to cis white men, we haven’t bothered to do the science and that bias is just holding us back.
And because there’s this expectation that women should be okay with living with pain, right? Women’s pain is so dismissed and minimized. That it’s just part of being a woman that your life’s gonna be full of this hormonal driven constellation of pain, and that we should accept that.
Linda
I sometimes wonder what I would be capable of if my legs didn’t hurt. Like, what would somebody with endometriosis achieve if they weren’t, like out of commission in like horrible pain for like a week of every month? It’s unreal that it’s allowed.
Virginia
It’s completely ridiculous. White hot fury for that.
The other thing I have white hot fury about is that of course as you’ve been on this journey, trying to access the liposuction or any other type of treatment you’ve been able to find, the number one thing doctors have been saying to you over and over is just lose weight, right?
Linda
Yeah, sometimes with no modifier. Like, just that. And I’m like, “You acknowledge that I have this condition, that is a fat disorder, that makes it difficult or impossible for me to lose significant amounts of weight. But I also need to lose like 70 pounds so that you will feel more comfortable putting me under anesthesia? Even though if I went to a different surgeon in your same hospital system, and was like, ‘Well, I would like one weight loss surgery, please,’ they would happily put me under?”
Virginia
No problem with that anesthesia.
Linda
And I think the root of it and how this intersects with fat liberation is people have an expectation that—and I think it’s a very Calvinist American idea—that the outcome is the proof of your virtue. So, if you have a fat body, that is evidence that you have done something un-virtuous to get to that point. And that is very hard to untangle because it’s so ingrained in who we are.
It’s so ingrained in our medical system that if you do the right things, and you follow the path, and you eat the right foods, and you exercise the right amount, if you do the correct things, you should be the ideal of the thin person. That is the expectation that most of us have is that we see a thin person and we think that they have done something correct. We see a fat person and we think they have done something incorrect and wrong and that they need to take some sort of corrective action, they need to change their behavior.
The doctor who diagnosed me told me very clearly: “There’s no diet, you could have gone on, no exercise program you could have joined, that would have prevented you from having this body. This is lipedema. This is the condition that you have, and there’s nothing you could have done to prevent it.” And I wept. Because that’s the opposite of what I’ve heard my whole life, which is “Well look at you. You are clearly doing something wrong.”
So either you’re at home with your secret Cheetos shovel or you’re lying to me in some way. There’s this suspicion—and there’s almost this desire, because the thing that has been suggested to me was, of course, weight loss surgery. And I haven’t read any evidence that it helps with lipedema. In fact, that’s how a lot of women discover they have lipedema. They’ll undergo weight loss surgery and they lose weight up top, in their face, in their chest, and their arms. And then they have this large lower body and it doesn’t budge. And so that’s when they go, “Oh, well, there’s something else going on here.”
But weight loss surgery is also presented to me, like, “well, let’s just cross that off the list.” I don’t think that 75 percent of my stomach is a reasonable barrier for entry. It’s not like it’s something that we’re just going to try to exclude just for funsies.
Virginia
I mean, what you’re outlining here about the puritanical Calvinist nature of it, I think, is just dead on. Because what they’re really saying to you is: “Even if this underlying lipedema is through no fault of your own, you need to atone for your body before we’ll help you.”
What happened to meeting people where they are? What happened to “do no harm?” Even if you did have the Cheeto shovel, right? You still deserve health care, you still deserve to be treated like a human being. And that’s what’s missing.
Linda
Yeah, for sure. And no disrespect to people with Cheeto shovels. Like, I love Cheetos. But there’s this desire to rake us over the coals, make us walk through the fire, jump through some hoops before we can get the thing that we need. I really think of it as proving our virtue. We understand that we have to atone and we have to sort of come to this place where we’ve been brought to our knees by all of the things that we’ve had to do just to prove that we’re not actually sinners.
Virginia
And it removes your ability to advocate for yourself. You’re having to meet this arbitrary standard and perform the Good Fatty for them. Just the way you’re being asked to play this game is so insidious.
Linda
I think that one thing that a lot of lipedema patients have in common is that we approach every appointment as preparing for battle. And the end result is unfortunately that these interactions with doctors don’t tend to go well. Because we go in with our dukes up, because we’re expecting a fight, because that’s all we’ve ever gotten from people in those white coats.
I wish that I could make myself smaller. I have tried. I’ve tried everything short of surgery. I gave myself gallstones when I tried Atkins. I’ve given myself kidney stones. I have put myself in the hospital. I have starved. I’ve exercised until my ankles were screaming at me and I could barely walk, and it doesn’t move the needle in any significant way. So at a certain point, I’m not willing to play that game anymore.
I’m willing to play ball a little bit. Like if they said, “Well, we want you to follow this diet before [liposuction surgery.]” Sure, I can do that. But I’m not willing to allow myself to be raked over the coals in quite the way they want to and I’m certainly not willing to try out amputating part of my stomach, in case I’m lying and I do actually just eat a ton of food. I’m not willing to shrink my stomach just to prove to medical professionals that I’m worthy of treatment.
We know that when we get a 90-year-old patient, they’re going to have certain risks. And there’s certain things you have to keep in mind if you’re operating on a 90 year old person who needs surgery. But you know you can’t change them. You can’t make them younger. Same thing with babies! Like, operating on small babies and children. It happens a lot. And it’s not a standard surgery, it’s not an ideal situation. But you can’t make them into fully grown a healthy adults.
Virginia
We have all these protocols to make pediatric surgery safe for their tiny bodies.
Linda
But for fat people, it’s, “Well, let’s make the bodies smaller and more convenient for us,” instead of just allowing for the fact that, yeah, they might be harder to intubate, but we can do it. Again, if I wanted weight loss surgery, they would find a way. Because that’s highly profitable for them.
Virginia
So that is the super depressing story on the health care side.
Another piece of this is how the Health at Every Size community has really let down folks with lipedema and in our haste to untangle health and weight, we often gloss over the lived experiences of chronically ill fat folks. So take us through that.
Linda
Yeah, so for me personally, there’s a lot of shame in not being the Good Fatty and being the chronically ill fatty, who can’t go on a long hike because my legs are heavy and swollen and hurt. There’s this focus on “well, you can be healthy at any size, just do the health behaviors.” And, you know, some people can’t.
Some people can’t be healthy, sometimes the literal problem is in your fat. So, it’s kind of this interesting contradiction, which I’ve been grappling with. Because I identified with Health at Every Size. I care about Health at Every Size. I want people to be able to access better medical care, and I want us to have this broader understanding of health, and maybe treat it more as a resource than an end goal. But we’re just not included in the conversation.
And it can be a really weird place because, it’s a lot of thin yoga ladies giving advice that you can eat the cookie and you should engage in joyful movement. And literally, the only movement that I can manage these days is “I hate every second of it, but I did it anyway,” because I needed to get lymph flowing in my body. So it just kind of feels like we’re left out.
I also think that there’s been a lot of capitalism that has infiltrated Health at Every Size. People marketing services as dietitians and coaches. And you know, get that bread. I want everybody to be able to make money. But the activism of going inside these systems and making substantive changes that produce better healthcare for fat patients—that isn’t happening because we’re all busy doing webinars and attending conferences where we all talk about the things that everybody already agreed upon.
And there’s no outward looking, like how can we actually make life tangibly better for fat people and make it easier for them to access medical care? The house is on fire. People are dying. You can’t sit on the lawn and talk about the architecture of the building. I need you to get in the house and pull some people out. And that’s why I stopped really identifying as heavily with Health at Every Size as a movement and moved into fat liberation because this is ultimately oppression. This is systemic oppression of a certain population of people based on something that is not within their control. I think that I just want to see more action and more attempts to get inside the building and pull out the people who are suffering.
Virginia
It feels like what HAES ends up doing is not that different from what you’re experiencing from these doctors that are asking you to perform Good Fatty stuff for them. They’re asking you to say, “Of course I want to lose weight, of course I’ll do anything to be thin.” And then the Health at Every Size folks are saying, “You have to pretend you can be healthy, even if you’re not healthy.” And so there’s still this performance element. And there’s this discomfort in acknowledging: Yes, some fat people are chronically ill. Sometimes that chronic illness is related to fatness. As you’ve said, lipedema is essentially a fat disorder. And weight loss is not the answer. Healthcare is the answer. But in the haste to promote this idea of being healthy at every size, we’re rendering invisible these other struggles.
Linda
The point where I started feeling this disconnect between HAES and and my own life was when I started developing lymphedema in my left leg. And again, it’s pretty mild. But even the most mild case of lymphedema is very uncomfortable and painful. And it was affecting my ability to walk around and comfortably engage in any sort of movement. There was a lot of shame that came with lymphedema with the realization that this is growing. I can’t control it. It scares the shit out of me. And it’s also making it so that I am one of those fat people.
Because I think there is a challenge point with fat people for HAES in particular, where we start seeing people who have lymphedema, people who have chronic illnesses, and their weight is not immaterial, that’s the body that they exist in. And sometimes that can come with unattractive conditions like lymphedema.
But I think that HAES spaces are very uncomfortable with those types of people who have some issues that may be associated with their weight. And I’m not saying caused by, but associated with, because people at the higher end of the weight spectrum, oftentimes do struggle with lymphedema and other issues and there can be a lot of shame in it. I can feel the discomfort sometimes, when we talk about these issues, because they’re seeing a fat person who’s not healthy, who can’t go put on yoga pants and go hike around and engage in joyful movement. And lumpy fat ladies who are not engaging in joyful movement just kind of get left out. And that makes me very sad as as one of the lumpy fat ladies.
Virginia
I think it’s not even discomfort. I think they’re worried it’s gonna blow up the whole thing. They’re worried that doctors are going to be able to point to a case like yours and say, “Well see, you can’t have Health at Every Size. You can’t do it.” And that is such bullshit. They’re afraid.
Linda
You can see that in who HAES spaces lift up as the icons. Like, you look at somebody like Ragen Chastain, who does amazing work. I think she’s fantastic! She’s also famous for being a fat person who ran marathons. So, those are the people that HAES wants as the mascots. And I hate to say it, but there are mascot fat people in HAES. And fat people who have messy medical conditions that are difficult to untangle and may have some association with weight. And it feels like if we admit that that is the case, then the whole worldview just gets blown up.
Virginia
And I do like that Ragen has a great piece she wrote about how movement doesn’t have to be joyful and health is not a moral obligation. But you’re absolutely right, the way her work gets quoted by others is often reinforcing this very thing that I don’t think she wants to reinforce.
So, not to make you do the thing of like, “tell us all how to fix it.” But what change do you want to see? How can people be good allies?
Linda
The thing that I would really like to see is thinking strategically about social change. How do we create change? What’s our theory of change here? So that we can make a plan to do outreach to medical professionals. How can we get this message that fat people deserve health care in the bodies they currently have? How can we get that to exist in hospital systems? How can we take that nugget of wisdom that everybody deserves the right to health care? How can we put that into action so that when a fat patient walks into an office they can be met with compassion and a desire to care for them?
Because that’s what’s not happening. I don’t work in the healthcare industry so I am not great at understanding what the path is to get into the right spaces, get in front of the right people, get in front of the right organizations, I don’t really know. But I think that HAES has often split off and offered this place that operates outside of the mainstream medicine. And I want to see it infiltrate mainstream medicine. I want to see a takeover, where if a fat patient walks into an office, they have nothing to worry about. They will be met with somebody who wants to help them and can care for them and is not going to blame their body for the failings of training of medical professionals. That’s what I want.
And I guess that’s not really as a strategy. But that’s the end result I want to see. And I really want to look to the people who do have those connections that experience that clout to think about that problem.
Virginia
I actually am really encouraged how often I do get an email from someone in medical school right now, saying they’ve listened to the podcast or they’ve read something. I just got one from someone saying, “I was listening to the podcast, I had to pull over and cry,” and I’m like, “good.” I mean, I’m sorry you cried, but good. This is what we need. It is these people who are going to be health care providers going in and thinking about how they can blow it all up and rebuild something better.
Linda
I am encouraged because I do see change happening. It’s not happening overnight, but I do see small shifts. And one thing that I am also seeing is that people are learning about lipedema and getting diagnosed. Again, saddest club, we can’t really help you.
Virginia
But it is true knowing what it is is the first step of anything happening. That is something.
Butter for Your Burnt Toast
Linda
I want to say my adopted kittens. Go adopt a kitten everybody. I adopted two of them recently and they bring such joy into my life. I could literally just stare at them all day. So adopt a pet, go to your shelter, find some cute animals, adopt them and love them. They make everything better, I swear to God.
Virginia
And wait, one you thought was a girl and then turned out not to be a girl. So remind me their names?
Linda
Luke and Liam. Liam used to be Leia until Leia was walking across my desk and I looked under the tail and I was like, “Oh, you are not Leia.” The Star Wars theme is gone. But they’re still very cute and fluffy and adorable.
Virginia
They are so adorable. One of them has a little heart on his fur. Oh my gosh, they’re so sweet.
Linda
He’s a real life Care Bear. My husband sent me a picture of this kitten that was at a local rescue and he had a heart, it’s like a perfect tabby heart. He’s a white cat with Tabby spots. He’s got a tabby heart. And I just lost my cat Pixel after 17 years of living with her. And I thought okay, well my heart is broken. And this kitten has a heart on his side.
Virginia
My older daughter is a devoted passionate animal person who would like us to have about 900 more pets than we currently do. And we have a dog, a cat, and a fish tank, but it’s not enough and I often show her your kitten content. We have a couple celebrity pets we follow on Instagram and Luke and Liam are on the list. We like to check in on them,
Linda
Love it. I’ll tell them that they are famous.
Virginia
At least locally, in my house. Yes.
Well, my recommendation for butter this week is a TV show. I’m obsessed with Bad Sisters. It’s on Apple TV with Sharon Horgan. She was in that really awesome show “Catastrophe” a few years ago. She’s an Irish comedian, actor, writer. And it is kind of like Irish “Big Little Lies,” but better. If you like dark comedy. It’s about this family of five sisters—and this is not a spoiler because it’s in the first episode—one of them is married to a total asshole. And the other four are plotting to kill him. And I just love ladies murdering a shitty man.
Linda
I also love to see that. I love to see it.
Virginia
I just love any kind of content about destroying a terrible man. And the sisterhood relationships are beautiful. It’s really funny. It’s beautiful because it’s in Ireland. So check it out.
Linda, thank you so much. This was an amazing conversation. I am so appreciative of your work, and you taking the time to educate all of us and share all of this. Tell listeners where they can follow you and how we can support your work.
Linda
Thank you so much for having me! I really love that you’re talking about this and that you invited me on. You can follow me on Instagram @littlewingedpotatoes. Again, lots of memes, lots of cats, but you’ll also get some fat liberation content occasionally. And you can also check out my blog Fluffy Kitten Party. I haven’t written there for a while, but I think I should start doing that again. So, maybe there will be a new post.
The Burnt Toast podcast is produced and hosted by me, Virginia Sole-Smith. You can follow me on Instagram and Twitter at @v_solesmith.
Our transcripts are edited and formatted by Corinne Fay, who runs @SellTradePlus, an Instagram account where you can buy and sell plus size clothing.
The Burnt toast logo is by Deanna Lowe.
Our theme music is by Jeff Bailey and Chris Maxwell
And Tommy Harron is our audio engineer.
Thanks for listening and supporting independent anti-diet journalism!
"I Sometimes Wonder What I Would Be Capable of if My Legs Didn’t Hurt."