Body and weight shaming hold a special power over people who live with chronic illnesses, both before and after diagnosis. Women in particular are often held to controlling, unrealistic and cruel beauty and weight standards. Since women are overwhelmingly more often diagnosed with chronic conditions such as fibromyalgia, migraines and lupus, it only makes sense that we are more frequently subjected to weight and body discrimination in the medical field.
I’ll never forget the first time I was weight shamed during a medical crisis. I was hospitalized for pregnancy-induced hypertension, also known as pre-eclampsia. Although it would be by more than five years before I was finally diagnosed, I experienced classic symptoms of lupus during my pregnancy. These symptoms, which were never considered to be part of anything more than a troubled pregnancy, resulted in the near-death of both myself and my child. Luckily, we both pulled through the emergency c-section that was ordered due to the effects of my failing kidneys.
As I was being admitted to the hospital, I remember a nurse tut-tutting at my chart. “Oh my dear,” she condescendingly looked down her nose at me as she spoke, “you’ve gained so much over the course of you’re pregnancy. It’s so hard to lose it, you should have been more careful.”
I was so dazed from the emergency hospitalization of myself and my unborn baby, I don’t think I did more than gape at her in anger. I was experiencing major fluid retention from my kidneys failing to filter the waste out of my blood, my baby’s heart rate was less than ideal and I was nearing a hyerptensive crisis. I couldn’t believe this woman found time to shame me for medically-related weight gain. I can’t believe she would body shame any woman about to give birth. I was about to embark upon one of the most painful journeys of my life, and I was being lectured about my weight as if it were a legitimate component of my emergency delivery.
It’s true, it was difficult to lose the 100 plus pounds I had put on during my pregnancy. I survived recurrent infections from my c-section, once again probably attributable to my still-undiagnosed lupus. It took me months to recover from my surgery, during which I experienced severe post-partum depression that was treated only by irresponsibly prescribed benzodiazepines. I dealt with PTSD and benzo withdrawal once I determined the medication to be improperly prescribed, as well as lupus-related fatigue, malaise and undiagnosed disease activity. Dealing with all of this in addition to being a mother to a colicky newborn does not sound like a time in any person’s life when they should be haunted by a nurse’s snarky comment.
The nurse’s cruel and improper comments stung for years as I slowly lost some of my pregnancy weight. However, I suddenly lost a lot of weight as I went through another episode of kidney dysfunction. I lost over 40 pounds as I became inexplicably ill. Uninsured and before the Affordable Healthcare Act, I had no dependable access to health coverage and cobbled together enough treatment from low-income clinics to make it through an epically painful kidney infection. Throughout, I was praised for my dramatic weight loss by medical professionals and family alike.
Like the unpredictable roller coaster lupus is, I recovered from my kidney issues and didn’t seem to have a major flare-up for a couple of years. I still struggled with fatigue and seemed to come down with what I thought was the flu very often, but life was OK.
The turning point for me was in 2014, when I became so suddenly ill that my primary care doctor thought I might have pancreatic cancer. I was experiencing incredibly painful digestive issues, inability to swallow food and was in the ER multiple times for related dehydration.
This all started with the troubling difficulty swallowing food. At first, I chalked it up to swollen lymph nodes and tried eating a liquid diet for a week or two. When it didn’t improve, I went to my primary care doctor. As I was explaining my symptoms and the fact that I felt as though I were practically starving on a liquid diet, he looked at my chart and remarked derisively, “Well, you haven’t experienced major weight loss yet so I don’t think it’s that bad.” He told me it was probably anxiety and didn’t offer any help beyond suggesting an antidepressant.
Clearly I needed to switch primary care doctors. I did so, and during this period of time I began developing severe pain in my upper abdomen whenever I would eat. Between this pain and the difficulty swallowing, I did indeed end up losing a major amount of weight. When I weighed in at my new doctor’s office, the medical assistant looked over my records and remarked that she wished she could lose weight so quickly. I didn’t really know what to say, since my weight loss was not in any way positive or healthy, so I chuckled politely.
I can’t fully put into words how disheartening it is to have weight loss viewed as a great boon when it is produced from the extreme pain and suffering of an undiagnosed illness. Throughout my journey of getting diagnosed with lupus, I was constantly met with medical assistants and physicians crowing about my weight loss. I also couldn’t help but notice the difference in treatment I received when I was at my lowest, unhealthiest weight. I was treated more delicately, my pain taken more seriously and my comfort made more of a priority.
I would like to acknowledge at this point in my story that I have always enjoyed thin privilege. Even at my highest post-partum weight, I have never experienced the bias, hatred and discrimination heavier individuals often brave on a daily basis. My body’s most comfortable and healthy weight is at the very top of my recommended BMI score, so I’ve always been within society’s generally accepted size. Although I often receive a warning about being nearly overweight, I haven’t experienced the outright hatred and complete disregard for any issue other than my weight. However, it did blow my mind to experience the way society has fetishized underweight women. It’s as if our worth and respectability hinge upon how little space we take up, how aesthetically pleasing our body is deemed to be. My weight loss was so severe and quick that it was almost Kafka-esque, allowing me a suddenly different experience with people I had been seeing as a previously “average sized” woman.
Additionally, I wasn’t taken very seriously regarding my lupus symptoms until I had become so ill I was emaciated. In fact, the first doctor I saw in regards to a clearly manifested lupus malar rash told me it was all in my head and related to anxiety. It took two years, multiple family doctors, many ER visits and two rheumatologists before I was diagnosed with SLE.
Women with chronic conditions like lupus and fibromyalgia deal with fatigue and pain that often makes exercising difficult or impossible. These illnesses and their medications are associated with weight gain. Why then are doctors so quick to body shame women and tell us that our pain, fatigue and other symptoms are all in our head? Why was my weight loss treated with more respect and validity than all the self-advocacy and research I brought to my physicians?
Even in my personal life, the sicker I became, the more compliments I received. Friends would lavish praise upon me, a family member confided that she had found me to be chubby beforehand, and even my spouse had told me how great I looked, bemoaning only that my weight loss wasn’t healthy. I was so saddened that those closest to me were focused on how my weight loss made me more attractive in their eyes, instead of being concerned for my health and recognizing the pain I was in. It made me question my worth and attractiveness in a way that was deeply unsettling. It exposed the cold reality of how devalued women’s health, safety and well-being is compared to the expectation that we squeeze ourselves into a modern corset of unrealistic body expectations and extreme thinness.
My weight has gone up and down over the past years, and it hasn’t been lost upon me that when I visit my doctor at the higher end of my weight range, it is always discussed as a pertinent issue. I’m warned about the risk of weight gain with my medications, and my physical activity level is often dissected. However, when I present at a lower weight after a terrible flare of gastro inflammation, it seems my pain and fatigue are taken more seriously.
Like everyone, I deal with body image issues, and my fluctuating weight makes it difficult to maintain a positive body image. Being treated as a more valuable and competent person when I’m thinner, both professionally and in my personal life, has made me feel extremely insecure when I am at a heavier weight. I don’t have any sage advice for my fellow spoonies, but I hope sharing my story can help others to advocate more fiercely for themselves.
Remember: You are not defined by your weight, your shape, your size or how much you exercise and eat. You deserve quality healthcare, respect, dignity and to have your symptoms taken seriously. You don’t have to accept body or weight shaming as part of your medical treatment. Respect shouldn’t be linked to our weight, and this is a dangerous standard that has become commonplace in the medical community. I wish someone had told me these facts earlier, but I hope that as you read these words, you feel supported and safe in our disability community.