I wrote a blog a few months back called "Overweight and Out of Shape". After writing that blog I began doing some research on bias in healthcare, and the information I found was pretty astounding. Bias against patients who are overweight is clearly an issue, but there is bias against women, against men, against people of color. These biases are real issues in our healthcare system, and it's something we all need to speak out about. We need to advocate for not only ourselves, but our fellow patients who also need to have fair, unbiased treatment.
I recently developed a serious infection in my leg, one that could have quickly turned into a life-threatening situation had I not gone to the ER when I did. I have severe edema in my legs, edema that has developed into lymphedema over the course of the past 2 years. With this comes complications; one being severe skin rashes that can break open and weep lymphatic fluid. These open wounds are ideal breeding grounds for bacteria. Despite my best efforts, I developed cellulitis in my left leg because of this weeping wound.
The frustrating part of this ordeal is that I contacted my cardiac P.A. a week prior to my ER visit. I explained that my edema was at its worst, that despite taking my prescribed diuretics in the variety of combinations and dosing options we'd tried, I was more swollen than ever, that the weeping wounds on my leg were getting worse instead of better. Her response was to make an appointment with one of two cardiologists within her practice who I'd seen previously, or to see the nutritionist.
And there began my "bias in healthcare" dilemma.
Cardiologist #1 had spoken to me like I was an idiot. He was convinced I was diabetic and that my edema was because I was in active heart failure. (Blood tests proved otherwise an hour later, but I got no apology or even acknowledgment of his errors in his assumptions.) The next day, while consulting with me after my double heart catheterization, when I told him we had been able to get me down to "x amount" pounds of fluid off 4 months previously with heavy dose diuretics, but it all came right back, he accused me of being delusional, insisting I was claiming to have 90 pounds of fluid, which was absolutely ridiculous. I told him no, it was only 40 pounds of excess fluid. He vehemently insisted I weighed 50 pounds more than I did. After my insistence, he pulled out his phone, pulled up my chart, saw that the weight I told him was correct, and ended the conversation by just leaving my hospital room.
Cardiologist #2 was very dismissive. When I expressed concern over my edema not going down despite diuretics, his response was that everyone is made of 75% water. Yes, but not everyone is carrying it around in their legs and abdomen to the point of having serious mobility issues...
Next, I saw a nutritionist. She set me up with a program to log everything I ate, to track calories, fat, carbs, sodium, protein, specific vitamins, etc. These were all things I'd been doing for the past 14 years using another popular free calorie-counting app, but I was compliant, did exactly what she'd asked of me. The booklet she provided said, "Log without judgment" so that's what I did. I logged absolutely every bite I took. If I had a day of emotional eating and indulged in 4 Swiss cake rolls, I logged it because I knew there was no use in being dishonest. That wasn't going to help HER help ME. When I went to my next appointment, we went over my food logs, I told her I was brutally honest about everything, even on days I didn't want to be. She commended me for that. However, when I got home and read her notes from the visit on my online chart, she wrote that I was consuming anywhere from 4,000 to 6,000 calories a day on days that I gave in to emotional eating. This was absolutely untrue. My highest day ever had been 3996, and I was completely honest with her about that day, what I ate, and what events had caused me to turn to emotional eating that day. I felt as though she didn't believe me, and was putting her presumptions in my notes even though I'd been completely honest with her despite my hesitation. I felt a complete lack of trust in her and in the program, so I canceled my next appointment, and have not scheduled any upcoming appointments either.
When looking further into bias in healthcare, I came across so many posts, blogs, and articles about a variety of biases people encounter every day. I found stories about women of color being told they were predisposed to certain health conditions without actually investigating the specific symptoms they were there to address. Others were dismissed as being menopausal rather than testing for other possible causes of symptoms. Stress was also blamed for many patient complaints, rather than looking into other reasons patients had specific symptoms. Many articles and personal anecdotes discussed that their stress and anxiety were caused BECAUSE OF their symptoms and lack of support from their providers rather than their symptoms being a result of stress and anxiety. And then, of course, there was the weight bias. Rather than acknowledging that patients of average weight often have the same health issues or ailments that overweight patients have, if a patient is overweight, the common response from providers is to suggest weight loss as a remedy to their symptoms.
Research on the impact of obesity bias in healthcare shows an elevated risk of psychological reactions such as eating disorders, unhealthy behaviors, anxiety, and depression which can negatively affect major vital signs. This bias also leads to resistance in seeking medical care and a lack of trust in healthcare providers, resulting in insufficient treatment for patient health and well-being.
As I stated in my original blog on this topic, I can't deny being overweight, and I'm certainly no athlete. But you know what else? I was "overweight and out of shape" when I graduated high school in 1992, when I took a 10-mile walking tour of D.C. in 2009, and the summer of 2021 when I was living my best life. I was "overweight and out of shape" when I was feeling ill in November 2021, and in December 2021, and still in February 2022, when I was officially diagnosed with Long Covid.
But, is that what's "wrong" with me? No. Is this "overweight and out of shape" identity something I've only taken on since being home with Covid for those 3 weeks almost 2 years ago? Nope, not accurate either. Should ALL healthcare providers diagnose patients equally rather than conclusively basing treatment plans on physical appearance? Absolutely, because last I checked, just being "overweight and out of shape" never stopped me from living my best life.
But Long Covid, and all of the many physical, emotional, and neurological symptoms that go with it definitely have.
Those are the things that a conservative estimate of 65 million people around the world with Long Covid are begging to be given; providers who look at them as individual people with very real symptoms that are tied to a horrible disease none of us want to be living with, a disease that has nothing to do with race, gender, age, weight, or socioeconomic class.
Davis, H.E., McCorkell, L., Vogel, J.M. et al. Long COVID: major findings, mechanisms and recommendations. Nat Rev Microbiol 21. 133-146 (2023). https://doi.org/10.1038/s4159-022-00846-2
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