Navigating Lipedema is one of the most difficult journey’s I’ve taken on in my lifetime. Gross under-diagnosis and fat bias support the institutional barriers to treatment. I’m determined to do the impossible and I refuse to compromise self-love, self-care, and support in exchange for it.

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My Testimony to Kaiser Permanente

Part II of "It All Started with Megan Thee Stallion".

Black and white image of me. I'm a fat, black, bald woman with Lipedema. I'm sitting next to my 2nd floor apartment window. My right elbow is resting on the window and my right hand is resting on top of my head. I'm looking away from the window and the camera. I'm wearing a black sports bra and the folds in my arm can be seen.

On September 10th, 2020,  I gave a medical testimony to Kaiser Permanente. This was in an effort to have Kaiser cover the costs of medically-necessary Lipedema Liposuction procedures outside of their network. If you don’t know, this all began with Megan Thee Stallion’s Tweet back in September 2020.

Medically-Necessary Lipedema Liposuction

Lipedema Liposuction is not a cosmetic procedure. The benefits of Liposuction for Lipedema patients are that it can:

      • Reduce or eliminate chronic pain associated with Lipedema
      • Reduce or eliminate inflammation associated with Lipedema
      • If completely removed, Lipedema may never come back

Lipedema Liposuction will reduce your body’s size, change your body’s shape, and may help you regain lost mobility. (I don’t list these as a benefit in an attempt to intentionally practice divesting from fat-phobic and ableist values.) With any surgical procedure, Lipedema Liposuction comes with risks and post-care needs that vary from patient to patient. Lipedema Liposuction is not covered by medical insurance because it is believed to be a “cosmetic procedure.”

According to Dr. Fu, Lipedema is “First World Problems.”

Two Paths

The opportunity to read a testimony to Kaiser came by way of a bizarre Twitter thread in response to Megan Thee Stallion’s CashApp Giveaway. I was also working with a volunteer advocate on a plan of my own. Both of these “paths” coincidentally met up on the same day. In the morning, I had an in-person appointment at Kaiser to meet with a surgeon as a part of my advocate’s plan. After my in-person appointment, I was scheduled to give my testimony to Kaiser by phone. The idea was to let Kaiser’s surgeons see me and come to the conclusion that they don’t have the experience to provide me with the type of care that I need. This whole idea was contingent upon Kaiser’s surgeons agreeing with me about the care that I need. Unfortunately, fat bias never fails.

 

Fuck Shit

The day started with my in-person appointment with Kaiser surgeon, Dr. Rose Fu. Dr. Fu is the first doctor to suggest to me that my Lipedema could be my fault. She says, “We fail to see Lipedema in 3rd world countries.” According to Dr. Fu, Lipedema is “First World Problems.” Dr. Fu’s analysis assumes that people in third world countries have access to enough doctors that know about Lipedema to diagnose it. In the U.S., Lipedema patients catch flights for diagnosis and treatment because their state doesn’t have a doctor that knows anything about Lipedema. Her analysis doesn’t ask how often people in third world countries see doctors or the medical institutional culture in different third world nations.

Image of me sitting at my apartment window staring out of it. I'm a fat, black, bald queer woman with lipedema. My right elbow is resting on the window and my hand is on top of my head. I'm wearing a black sport's bra. My arm is large and has hanging skin and a fold in the middle of my upper arm. Tears are coming down my face.

High BMIs & Lows

By the end of the appointment, Dr. Fu said what every doctor has said to me, despite the information and requests changing throughout the years: My BMI (Body Mass Index) is too high. Dr. Fu disregarded every doctor that diagnosed me with Lipedema. When I’d had enough of debating with her, I abruptly interrupted Dr. Fu’s rant, thanked her for her time, and began dressing. Dr. Fu denied me a referral to see an out of network plastic surgeon because she thinks my BMI is dangerously high and Lipedema Liposuction would risk my life. She also suggested that I look into a gastric bypass procedure. I challenged her assertion that Gastric Bypass is less invasive than Lipedema Liposuction. Dr. Fu claimed that gastric bypass would save my life.

Before I had a menstrual cycle, I had a diet.

Sad image of me, next to my apartment window. I'm wearing a black sports bra, gold hoop earrings and I'm looking off-camera. Another sad portrait of me, wearing the black sports bra and looking into the camera. I'm not smiling. Last of the 3 sad images of me. I'm looking downward in this image.

The Testimony

Dr. Fu promised to recommend that I do not see a Lipedema specialist on Kaiser’s dime. I stormed out of the doctor’s office with a face full of hot tears streaming down my face and a few short hours away from giving my testimony. This is the emotionally-charged testimony I read over the phone after seeing Dr. Fu.

Intro

I would like to start by thanking you for your time. It has been a difficult year for all of us. I appreciate this opportunity and space to advocate for myself. My journey with Lipedema began before I knew what Lipedema was. I didn’t know that a fat disorder existed, let alone several of them. I trusted my doctors to tell me what was right and wrong with me. Often, doctors told me that I was too fat and that’s problematic. I was told to make weight loss my most pressing concern, desire, and goal. I took their advice. 

Exercise

Before I had a menstrual cycle, I had a diet. I attended the California Athletic Club in Hayward, California, and worked out with my parents each morning before school. I enjoyed lifting weights and swimming. Before I could drive a car, I had a gym membership of my own at Nautilus in San Leandro, California. My best friend’s mother, a nurse, walked the treadmill between myself and my friend for 45 minutes. Afterward, she’d escort us to the weights in a separate women’s-only part of the gym. We were so young that we weren’t allowed to navigate the gym by ourselves. 

I grew up in gyms. The first time I dislocated my knee was in a step aerobics class. I was not aware that many of my joints would continue to move and sublux as I grew older. To this day, I still have a gym membership. I’ve taken Bikram yoga, Vinyasa Flow, and Kundalini yoga as a young adult. When I quit smoking, I went to the gym daily to manage my addiction to nicotine and I regularly swim in swim-a-thons to raise money for Cancer and honor my mother’s life. As time goes on with untreated Lipedema, I’m becoming less and less mobile.

Mobility

In February of this year (2020), I took my first trip to LA and used a wheelchair for the first time to navigate the airport. I was cast in a commercial for a nonprofit organization that thought I showed the kind of resilient persistence their organization stood for. I hired an attendant to wait nearby from location to location with a car to get me around. He made sure there were always chairs nearby as I can no longer stand for long periods of time. When my body warms up, my knees get even looser, and sometimes the connective tissues around them snap. It feels like rubber bands snapping at my knees from the inside of my body. A Kaiser geneticist warned me against walking so much at my weight to spare my mobility. 

Kaiser doctors didn’t diagnose me first. 

My first attempt at a Lipedema diagnosis didn’t happen through Kaiser. After I suspected that I had Lipedema, I joined an online Lipedema support group for women. Lipedema patients told me horror stories about their needs being ignored by their doctors because of their weight. They warned me that asking a doctor about Lipedema while having a BMI over 40 would result in suggestions for diet counseling and weight loss surgery. 

They weren’t wrong. At Stanford, where they have a Lipedema Research Center, I was told that I wouldn’t be given a referral to see the Lipedema Specialist, Stanley G. Rockson. With that denial, I was criminalized for being fat, and told me that I should talk to someone about weight loss surgery. The doctor hadn’t even examined me before prescribing gastric bypass to control my weight. This was the most-informed institution I could have sought out, at that time, on the topic of Lipedema. 

The moment she left the room, I rushed to put on my clothes and tried to get out of there as fast as possible. I was in shock and disbelief that something so obvious to me would be obfuscated by a body mass index. This community of women with Lipedema tried to warn me, but that experience drove the point home. Nothing would ever be more important to any medical institution than my BMI. Not even a rare disease that I knew more about than the doctor I asked to look into it. 

 

Fat Bias is a barrier to Lipedema Treatment. 

I tell this story to express that I’ve navigated this type of bias everywhere, including my appointments at Kaiser. Even Dr. Jack Friedlander struggles with fat bias. Dr. Friedlander wrote a letter on my behalf expressing that I should see a Lipedema specialist, have specialized Liposuction and that it should be covered by Kaiser also suggested that I have weight loss surgery before he examined me. I want to make sure that this point does not go without being understood: Even the doctors who remove Lipedema thought I should have a weight loss surgery prior to examining me. After examining me, every doctor that treats patients with Lipedema recommends avoiding approaching my pain and mobility with weight loss surgery. They all agree that it is imperative that my Lipedema is removed first.

 I’m asking you to believe a fat, black woman about her needs because you are a company where mere survival isn’t enough. Kaiser is committed to me Thriving.

Navigating medical fat bias with Lipedema

Today, when I see a doctor, I must insist on removing my clothing. I must ask them to touch my body with their hands to physically feel the density of Lipedema present. I must lift my arms and turn around while they squeeze at the different sacks of Lipedema that hang from my body.  I’m constantly forced to prove that it’s in my chest, breasts, back, upper and lower arms, armpits, flanks, upper and lower belly, thighs, knees, and calves. Each time, I have to prove that my body’s mass is made up of a large amount of Lipedema in places that Lipedema is not supposed to grow. In every appointment, I have to point out how small my hands and feet are. I have to do the labor of walking doctors out of their own biases in every appointment or else I’m unable to get the help that I need. 

 

What doctors who treat Lipedema are saying

I should take some time to reiterate the body of proof that I have shared with you. Since my first attempt at a diagnosis at Stanford Medical, I’ve been diagnosed with Stage 4 Lipedema 5 times. Yes, 5 times. The impact that appointment at Stanford had, gaslit me for a very long time to follow. The following doctors have confirmed that I have Lipedema. 

                • Dr. David Amron
                • Dr. Gregory Lukaszewicz, Kaiser Medical
                • Dr. Emily Iker
                • Dr. Jack Friedlander
                • Dr. Jamie Schwartz

Dr. Jack Friedlander

Dr. Jack Friedlander, who performs medically-necessary Lipedema Liposuction suggested that I see a specialist closer to the research being done on Lipedema due to my remarkably thin skin and the unusual areas Lipedema has spread to. He noted that my skin has become so thin that energy-based tools could cause harm and damage to my body. Dr. Friedlander encourages me to insist that Kaiser cover my procedures because, at this point, they are medically-necessary. During my last appointment with Dr. Friedlander, he said, “I’m not even sure you have any non-Lipedema fat on you. We’re usually able to tell where the lipedema stops and your losable fat begins. Your body is special.”

 

Dr. Emily Iker

Dr. Emily Iker, a Lymphatic specialist with a personal history of Lymphedema examined me using ultrasound technology to see exactly where my Lipedema was. She confirmed that I have a significant amount of Lipedema in my chest, breasts, upper and lower arms, flanks, upper and lower belly, thighs, knees, armpits, and calves. Dr. Iker stated that, due to the pain and condition of my upper body along with the amount of Lipedema obviously present, a weight loss surgery would not offer enough impact to solve the most pressing problem. 

 

Dr. Jaime Schwartz, Total Lipedema Care

Dr. Jaime Schwartz, who also performs medically-necessary Lipedema Liposuction has offered his support as he agrees with both of the aforementioned doctors. He believes that my Lipedema is unique. In the screenshots of the video I’ve included, he can be seen saying, “you’ve just grown Lipedema everywhere” in response to feeling how much of my body is made up of Lipedema. Similar to Dr. Friedlander, he believes that most, if not all, of my excess weight, is Lipedema. 

 

I was diagnosed with Hypermobile Ehlers Danlos Syndrome

In addition to the doctors’ statements that I’ve included, I was diagnosed in March by a Kaiser Genetic specialist, with hypermobile Ehlers Danlos Syndrome. When I told her that my knees constantly subluxed throughout the day, even while lying in bed, she noted that my condition was a bit advanced. She confirmed that walking isn’t good for me and that my weight is having an impact on the health of my connective tissues. 

Diet & Food

I’ve been a vegan for 2 years now, since May 7th, 2018. Dr. Iker was able to offer me the advice of kicking gluten out of my diet. She suspected that I had stomach trouble and she was right. Seeking out the care of doctors who are most familiar with my condition outside of Kaiser’s current offerings has vastly improved my health and self-care plan.  

As a matter of fact, most of my care plan has come by way of crowdsourcing information and experiences from other people with Lipedema and fundraising to meet with specialists. Every step I’ve taken towards better health has been guided by a collective 8K+ of women who haven’t been able to rely on the decisions health care providers have made for them. It was through them that I learned that I would have to educate my doctors about Lipedema. 

Becoming a vegan has allowed me to maintain the same weight for 2 years now. Anyone, with or without Lipedema, can tell you that maintaining your weight is very difficult. I find it relatively easy to do and I have a very healthy relationship with food. I rarely eat until I’m full, I eat plenty of fruits and vegetables, and I never starve myself or binge eat. 

BMI

BMI is a value derived from the weight and height of a person. Multiple doctors with extensive experience with Lipedema and/or Lipedema research have hypothesized that the majority of my weight is made up of Lipedema and that is rare and odd. My body is a unique case of a rarely diagnosed condition. There are no current systems of evaluation defined in any of the present-day medical systems, that can give you an accurate roadmap of best-practices as they relate to my ‘weight.’ 

Until the technology exists to determine how much of my weight is losable fat versus Lipedema fat, no medical institution can accurately calculate my BMI or the impact of Lipedema on my health as it relates to obesity-related conditions. I insist that you lean on the opinion of professionals who have the most intimate experience with Lipedema when it comes to considering BMI as a valid reason to dismiss my care needs. We don’t even know what causes Lipedema yet, we certainly do not know how it impacts BMI.

 

Important points

In closing, I’d like to bring up the importance of context when considering how to move forward with an issue. To understand the context in which I’m asking you to cover the cost of my medically necessary Lipedema Liposuction performed by Dr. Jaime Schwartz, consider what you now know about me: 

              • I have a lot of Lipedema in non-typical areas, as stated by multiple doctors who have extensive experience with Lipedema patients and the Lymphatic system. 
              • My BMI cannot be accurately calculated at this time because no one knows how much losable fat I have versus the Lipedema. 
              • I have very thin skin throughout my body, requiring the special technique of using non-energy-based Liposuction tools in which Dr. Jaime Schwartz has successfully developed
              • I have stage 4 Lipedema, usually a stage where Lymphedema is a threat. 
              • If this continues, my mobility could be sacrificed as I am already using wheelchairs to navigate long walks due to hypermobile Ehlers Danlos Syndrome
              • I’ve been able to stop weight gain despite having Lipedema and have a healthy relationship with food. 
              • I have been able to get the best care from the experts who have the most experience with removing Lipedema. 

The Ask

I am asking Kaiser to do something that the Lipedema community has told me Kaiser does not do. I’m asking you to center my experiences as the most expert source of information about my body. I’m asking you to shift away from a BMI-first approach that doesn’t benefit me. You’re an institution and with that comes the responsibility to manage your power carefully. At a time when we are having transparent conversations about the harm and violence institutional-based race/weight/gender/class biases have done, I expect Kaiser to act responsibly with your power. I’m, bravely, asking you to consider that these biases have been built into your institutional practices and that doing what you’ve always done would be to continue moving forward with biased practices. I’m asking you to believe a fat, black woman about her needs because you are a company where mere survival isn’t enough. Kaiser is committed to their patients Thriving. 

In Closing

Again, thank you for your time and engagement in my need for care. Moving forward with Lipedema Liposuction with Dr. Jaime Schwartz is the best possible care I can choose for myself. Allowing Dr. Schwartz to partner with you in this way is the best way to avoid further debilitating me as my mobility and pain are changing rapidly. I’m afraid for my future and trusting you to make the decision in favor of me Thriving. 

 

Kaiser’s Response

After giving my testimony I received a letter in the mail from Kaiser officially denying to cover the costs of seeing an out-of-network surgeon for Lipedema Liposuction.  

Comments
  • I am truly sorry for your experience and I pray that one day you are given the opportunity that you so rightfully deserve.

    January 20, 2021
  • jen

    Your testimony was logical, reasonable, passionate and accurately communicated your humanity and how much you deserved Kaiser’s assistance. Shame on Kaiser for being so callous and hypocritical. (Thrive my fat ass!) I recently stumbled in your blog from Instagram and your story really hit close to home. I believe I may have lipedema, and it’s really nice finding other gluten-free vegans. I’m rooting for you and hope you’re able to access the care your need (and deserve!) sooner than later.

    February 7, 2021
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