Fighting Weight Bias in Healthcare While Living With a Rare Disease
When doctors focus more on my weight than my pulmonary fibrosis
I have a weight problem. But the bigger problem is that no one believes that I don’t choose to be this way.
I’m an overweight, middle-aged woman fighting pulmonary fibrosis (PF) and going through menopause. As such, it takes double the effort to lose weight — especially since I’m not a fitness guru. The changes in my hormones and metabolism have made weight loss a slow journey. But slow progress is still progress; I’ve lost 60 pounds in the past year.
Although I’m working on losing weight, it’s very frustrating when I seek care for my chronic illness and my weight is all doctors can seem to focus on. I’d love to concentrate instead on finding a treatment to slow disease progression and reduce the severity of my symptoms.
This past month, I’ve visited multiple doctors, been hospitalized, and had several procedures done. I had fluid buildup in my lungs, my heart was beating erratically, and my immune system was under attack by my own body. It’s been a tough time, yet the only question on my mind was, “How quickly can I lose more weight before I see the doctor again?”
Confronting weight bias in medical settings
While weight bias is deeply rooted in our society, I’ve found that it’s now trickled into healthcare. The most unfortunate part of my PF journey has been the countless times doctors have spoken to me about my losing weight, as if it would cure my illness.
An article published in 2006 in the journal Obesity (Silver Spring) shared results from a study of 2,671 overweight and obese adults, who self-reported their experiences with weight bias. Researchers found that, “More frequent exposure to stigma was related to … higher BMI [body mass index]. Physicians and family members were the most frequent sources of weight bias reported.”
The UConn Rudd Center for Food Policy and Health‘s website also addresses weight bias, noting:
“Some professionals within [medical] groups perceive patients with obesity to be lazy, lacking in willpower, unmotivated to improve health, and noncompliant with treatment. When patients feel judged or stigmatized about their weight, this can lead to lower trust of their healthcare providers, poorer treatment outcomes, and avoidance of future health care.”
I’m not against being healthy, but when I’m told to just “exercise willpower” and “stop eating,” that’s too much to handle. I feel as though I’m a small child being scolded and getting in trouble for being fat.
One medical team urged me to consider having gastric bypass or gastric sleeve surgery. I refused, and it seemed to offend them. But I remember practically starving myself at one point, willing to try anything to “cure” my illness. It almost led to an eating disorder. Instead of looking in the mirror and seeing an overweight version of myself, I saw a deathly ill person waiting to die.
Fast weight loss was not the answer. As Pulmonary Fibrosis News’ Alice Melão reported in 2019, losing weight quickly has even been linked to worse outcomes for people with idiopathic PF.
I’ve also had visits where it felt like I was being bullied into losing weight. Some doctors don’t realize how fragile their patients may be — especially those of us dealing with chronic illnesses. I’ve wondered if some healthcare professionals dwell on my weight loss because it’s easier than addressing my complicated, rare illness.
Taking a new approach
After wrestling with my illness for the past month, I’m now on the mend and have regained most of my energy. While I’ll always be oxygen-dependent, my lungs are better able to function with my normal oxygen flow.
I’ve been questioning how to come back from this battle and decided I want to try something different.
I’m going to work harder on my confidence, find new avenues for becoming healthier, and go at my own pace. I won’t rush and wreak havoc on my body again. I must do my best to keep my health stable.
I’m hopeful that my doctors will listen to me and concentrate more on treating my illness. Those of us with PF deserve concern and compassion.
My wish is that healthcare providers will read this and better understand the perspective of someone who’s overweight and living with a rare illness.
Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.