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Anti-Fat Bias, Misdiagnoses, and Vulvar Lichen Sclerosus

Anti-Fat Bias, Misdiagnoses, and Vulvar Lichen Sclerosus

Introduction

Content Warning: anti-fatness, anti-fat bias, weight loss, medical abuse, and medical neglect.  

Misdiagnoses are common in the vulvar lichen sclerosus (VLS) community. Many of us, myself included, endured years of pain and suffering, only for healthcare providers to dismiss us. Many factors contribute to misdiagnosis. For example, a lack of provider education about vulvar lichen sclerosus can lead to misdiagnoses; lack of awareness may be another factor. Those two points get a lot of attention when it comes to misdiagnosis. However, something that gets less attention is discriminatory factors that can lead to misdiagnoses.

Today, we have the honor of featuring a guest post by Chris Barbieri on the topic of anti-fat bias, misdiagnosis, and vulvar lichen sclerosus. Anti-fat bias is a form of discrimination that involves prejudiced attitudes against someone's body size or weight. Chris is one of Jaclyn's oldest and dearest friends. She is a brilliant human with a generous heart who loves her friends and family fiercely. She is a freelance writer, VLS warrior, and one of the funniest humans I know.

Without further ado, here is Chris's piece on anti-fat bias and vulvar lichen sclerosus.

My Experience as a Person in a Larger Body

Anti-fatness is not new to me; it’s something I’ve navigated my entire life, as many others in larger bodies have. 

From a young age I was encouraged to diet, advised that my fatness would hold me back in life (professionally, romantically, in all aspects really), and I wouldn’t live as long as my straight-sized peers because my fatness would inevitably lead to my early death. 

Sounds scary, doesn’t it? Sounds like either I lose weight or resign myself to the fact that I am unhealthy and not meant to be around for a long time. 

Am I sick? Yes.

Do I have multiple illnesses, both chronic and auto-immune? Yes.

Is my weight the cause of my conditions? No, nor has it contributed to or exacerbated them. 

Yet, the medical community, and most people really, vehemently disagree, believing fatness is what kills people, even though the data doesn’t support these claims.

Anti-Fat Bias is on the Rise…and It Is a Problem

Although there is a rise in the body positivity movement, it hasn’t changed the prevalence of anti-fat bias, with people in fat bodies increasingly being subjected to abuse and micro-aggressions because of their weight. Studies have shown that over the last 5-10 years, biases towards minority/oppressed groups have been steadily decreasing, while anti-fat bias is the only one consistently increasing.

Graphic design word image saying "Break the Bias".

Harvard University analyzed data from its infamous implicit bias tests from 2006-2017, and the results show while there has been a steady decline in biases over the years, “anti-fat bias has changed the most slowly of all explicitly stated attitudes. And when it comes to implicit bias—that is, the bias we unconsciously act on—anti-fatness is getting significantly worse” (Gordon, 2020). The researcher assigned to disseminate the data from the implicit bias studies noted anti-fat bias “is the only attitude out of the six that we looked at that showed any hint of getting more biased over time” (Goldberg, 2019).

Anti-fat bias and me

Getting any diagnosis when you’re in a bigger body can be an impossible feat.

Doctors have consistently attributed my discomfort, pain, or health issues to my weight during nearly every visit for health concerns.

When I saw a GP about knee pain after sustaining an injury (friendly bit of advice, don’t drink and shovel; you’ll definitely get hurt), they told me I was fat and that it was affecting the integrity of my knee.

So, I lost 70+lbs in less than 5 months, and nothing changed; my knee only got worse. Finally, a specialist examined my x-ray and body and advised me that my weight was not the issue, revealing that I had arthritis behind my kneecap.

It’s easy to believe the first doctor I saw had reason to tell me to lose weight, as it seems only fat people have knee issues (sarcasm intended, in case you missed it). People in straight-sized bodies don’t hurt their knees, or if they do, it's not their fault. 

Anti-fat bias & LS

Sadly, my LS story and the road to getting a diagnosis wasn’t all that different from my experience with my knee pain. 

I don’t know exactly how long I’ve had LS. Based on what I know now, I’ve been symptomatic since I was about 14 years old. 

My story is not dissimilar to others. I was young, I didn’t know my body and I felt a wave of shame talking about my vulva to friends, family, and doctors. 

The first time I felt a burning and itching sensation so painful and intense it made me double over in pain, crossing my legs and squeezing them shut in the hopes that the pain would go away, I went to a walk-in clinic. 

Graphic design image of a person with blue underwear and a microscope with bacterial implying a yeast infection.

After a very brief examination, the doctor told me I had a mild yeast infection. 

She gave me a prescription for the necessary meds and looked me up and down, advising me to change my diet and lose weight as prevention for further infections, as both my weight and diet were to blame.

Sigh. 


So, for years, decades really, I treated the itching, burning, paper-cut feeling (a feeling I find more similar to being stabbed in the vulva with lots of tiny, searing-hot needles), as though it were yeast infections. I assumed I was more prone to them because of my body. I did notice they were more frequent and persistent during periods of high stress, but I thought nothing more of it. 

Learning about Vulvar Lichen Sclerosus

And then in 2020, I started editing my friend Jackie’s blog on lichen sclerosus (you all know her as the lovely, brilliant, amazing, and compassionate Jaclyn of The Lost Labia Chronicles), a condition I had never heard of before. The more work I worked on her blogs and learned about lichen sclerosus, I began to wonder, do I have it too?

I gaslit myself like a pro, reader.


I reminded myself that I had been having yearly pap smears since I was 21 and had increased their frequency to twice a year in 2018 when doctors diagnosed me with pre-cervical cancer. No way could so many doctors and gynecologists in three different provinces have missed this. There’s no way.

Sure, my labia minora were small, almost non-existent, and I had similar-ish symptoms, but everyone’s vulva is different, right? And there was no lightening of my skin, so I convinced myself my mind was playing tricks on me; my anxiety was simply overreacting and drawing conclusions where none were to be drawn. 

Wait…Do I Have Vulvar Lichen Sclerosus

That all changed on November 1, 2021. I went to the Bay Centre at Women’s College Hospital for my yearly pap (an excellent clinic for people with vulvas). At the end of my exam, the doctor asked if it was okay for her to bring in a second doctor as she wanted her to look at my vulva to confirm something.

In that moment, I froze. 

Having one doctor see you in such a vulnerable position is awkward and stressful enough, but needing a second opinion instantly had me fearing the worst. 

After the second doctor came in to examine me, she asked if they could bring in a third doctor before confirming anything with me. As the third doctor entered the room, the other two explained what they wanted them to confirm. 

As soon as I heard them say “Her skin looks lighter”, I interrupted them and asked if they were about to diagnose me with LS. 

All three of them stood there, looking at me, asking how I knew about LS. 

Processing the News

After they gave me the run-through we’ve all received from doctors, a 5-minute talk about steroids, how to use them, and what this means for me and my vulva, they sent me on my way.  

Graphic design image of a doctor talking to a patient.

I barely remember the aftermath of that appointment. Still, I do remember I called Jackie, and she gave me suggestions on the medical care I should request to make my diagnosis official and rule out any other vulvar conditions. So, I booked an appointment with my gynecologist at the time, explaining I wanted a biopsy to confirm whether I had LS or not. 

On the day of my appointment, I was a mess. I was anxious and worried about the pain associated with the biopsy. Let’s be real; I was also terrified to have this diagnosis confirmed. Receiving a diagnosis for any medical condition is scary. Still, LS felt different as it affected my body, my vulva, and it felt like it affected my identity as a woman. 

Facing Anti-Fat Bias in Vulvar Lichen Sclerosus Care

My GP referred me to a well-known gynecologist in Toronto to perform a biopsy. When I arrived for my appointment, I was beyond nervous, but I was ready to go through with the biopsy and make this diagnosis official. 

The doctor came in, examined me briefly, and asked what my symptoms were. Before I could ask questions about the biopsy and my LS, the doctor advised me that I was misdiagnosed. I did not have lichen sclerosus. He dismissed my symptoms, telling me itching and the feeling of being stabbed with needles/knives were not symptoms of LS. 

I tried my best to remain composed and asked him to explain what caused the reabsorption of my labia on top of the other symptoms I listed while I was still on the examining table, half naked, barely covered by the medical paper they provided. He immediately interrupted me, his tone brisk, bordering on rude, and told me that it was because I was fat. 

Then he advised me that the itching, the reabsorption, the papercut-like feeling, and the discoloration of my skin were not caused by LS, but due to my being fat. 

He said if I were thinner, there would be less dampness and friction, and my vulva would not have experienced such physical changes if I were in a straight-sized body. 

How is This Allowed

It took all my willpower not to cry. 


Many people have called me fat many times in my life, making assumptions about me and what kind of person I am based on my weight, but this felt different.

It was cruel, malicious, and unfounded in medical data. 

And it made me feel so much shame. I felt like I failed myself in that moment because I wasn’t straight-sized. That doctor failed me that day, and I wonder how many other patients in bodies like mine or larger made to feel the same way. 

It breaks my heart and feels defeating at times to see the negligence and mistreatment people in fat bodies receive by medical practitioners. 

Conclusion on Anti-Fat Bias

Fatness does not cause lichen sclerosus or other medical conditions. Medical schools and the medical community at large still view fatness as the villain, as the cause for people’s health conditions when it itself can be a symptom of conditions and/or medications, caused by genetics, or due to being on crash/starvation diets that have negatively impacted their metabolism as a result. 

Fatness is not synonymous with being unhealthy. But medical schools still aren't training doctors to understand this, nor are they doing the work to educate themselves once they're out of med school and practicing on patients.

What it comes down to is that anti-fat bias runs rampant in the medical community, and it affects the quality of care patients in larger bodies receive.

Graphic design image of a BMI image.

Health care practitioners are taught that BMI is a valid tool to use to determine an individual’s ‘healthy weight’, even though the BMI scale has been disproven time and time again. To be clear, it isn’t only doctors who have anti-fat bias, but they cause the most harm to patients, as their role is to help us, not to be an extra barrier to obtaining proper medical care. 

Advice for Allies & Conclusion

I want to end this post with a suggestion: educate yourself. 

Be the ally your fat friends and patients need. 

Graphic design image of different sized-bodies standing together in solidarity.

You can do this by engaging with fat activists like Aubrey Gordon and listening to their podcast, Maintenance Phase. They and their cohost extensively research and discuss the issues within the wellness industry, demonstrating empirically how the treatment of fat people stems from anti-fat bias masked as care and concern for the health of individuals in fat bodies.

Chris' Bio

About Chris

Chris has an MPhil in Humanities and freelances as an editor and writer. She believes there is a need for more intersectionality and equity in the medical field and society as a whole.

Chris enjoys spending her free time drinking coffee, being with the community, and hanging with her cat.

Email Christ at: chriss.barbieri@gmail.com

Chris' instagram

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References

Carey Goldberg, “Study: Bias Drops Dramatically for Sexual Orientation and Race—but Not Weight”, CommonHealth, WBUR, January 11, 2019, https:/www.wbur.org/commonhealth/2019/or/11/implicit-bias-gay-black-weight

Gordon, A. (2020). What We Don’t Talk About When We Talk About Fat. Beacon Press.

2 Comments

  • Sarah

    This is such an important topic, thank you for writing about it! I’ve had some similar experiences. I saw a dermatologist about my symptoms and one of the first things he told me, even before he knew about my general health was that I should lose weight as it will help with the symptoms. He did not like it when I answered back and explained that I actually only started experiencing these issues a year or so after I lost 3 stone.
    Hopefully we can increase awareness by talking about it more.

    • Jaclyn Lanthier

      Hi, Sarah. Thanks so much for your comment. I’m so sorry this was your experience; I truly hate how common it is. I agree; a lot more awareness is important.

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