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?”
Fighting every symptom my illness has to offer. (Photo by Ann Reynoso)
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.
Starting to feel better after a monthlong battle with my illness. (Photo by Ann Reynoso)
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.
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Comments
Regina Bolyard
Ann,
Thanks for sharing your experience. I believe that weight bias delayed my IPF diagnosis for years. I was easily winded and unusually tired and my doctor always suggested I loose weight. I did….60 lbs. That made very little difference in how I felt.
I think doctors sometimes feel like their hands are tied when there is nothing obvious to explain the persistent symptoms of ILD. Insurance companies restrict diagnostics with a step protocol. Also, medical training teaches to look for the simplest probable cause (hoof beats = horse, not zebra). My PC Doctor is one of the most caring, compassionate, and sympathetic people I have ever known. She struggles with weight herself. But even she ascribed my issues to lack of conditioning and obesity. It was only after a CT following chest pain showed fibrosis in my lungs that I got started on the path to diagnosis of IPF…after years of frustration and worsening symptoms.
The lesson I learned is to be my own advocate; to not second guess my own instincts or dismiss my knowledge of my own body and my lifestyle. I may have been clinically obese, but I was moderately active and stronger than friends who obsessively do Pilates.
It really is a shame that doctors are not able to keep up with all the latest knowledge. Of course it is important to be fit. Well conditioned muscles require less oxygen. But being overweight is not as simple a metric to good health as is fed to the medical establishment and promulgated in the world at large. It is a complex relationship, and often grossly oversimplified to the emotional harm of patients.
Ann Reynoso
Hi Regina. Thank you for reading my column. I do understand that doctors, especially those who specialize, may be busy and thus find it hard to keep with the latest research. There should be some time taken out of their busy schedule to catch up and become familiar, especially when dealing with a patient that has been diagnosed with a rare illness. I agree that that there are many doctors who do show care and compassion for their patients, and for that I am grateful. I am happy to hear that you have taken your illness and become your own advocate. I have learned as well that I had to voice my concerns, and sometimes I had to speak loud just to be heard. Thank you for sharing your story with us.
Laura
Best of luck to you. Please know you will be in my prayers.
Ann Reynoso
Thank you Laura for your kind words and thank you for reading my column.
Judy Sanders
Stay true to yourself dear one. Kudos for having the courage to speak up when you’ve been put down so often. I hope your health improves.
Ann Reynoso
Thank you Judy. I am working hard to stay positive. Thank you for reading my column.
Denise Stogdill
Kudos to you Ann for doing things at your speed and becoming your own advocate. In my case, I suffer from ILD with associated Rheumatoid arthritis. My immune system is always on overdrive therefore I struggle with inflammation all throughout my body. I began to research foods that helped keep the inflammation down. I started eating those foods and stopped eating the stuff that wasn’t good for me. I’m overweight as well. My intention was not to lose weight, it was to either stop or slow down the inflammation in my body. As a result, I’ve felt a lot better since my inflammation has slowed down and in 18 months I have lost 84 pounds. For me, the win is that I don’t have as much pain from the inflammation so I can get around easier and do more. The weight loss is also great because if we want to meet lung transfer criteria, weight is on the checklist. My message to you is that I didn’t start out with the intention of losing weight because of my doctor or social pressures. All of my effort goes to feeling better and keeping exacerbations away. If you lose weight as a result of that then it’s a win/win with our disease. Don’t let anyone pressure you to lose weight because that’s what is socially acceptable. Concentrate on feeling better and eating the foods that will get you there. The rest will happen organically. I apologize for such a long message. Be well, you’re a warrior 💕💕🫁🫁👋
Courtney Firak
Thank you for sharing your story, Ann. It is extremely frustrating but not surprising that you have been experiencing these issues with the healthcare system. The pulmonary fibrosis community is near and dear to my heart as my stepfather battled IPF from 2010 to 2015. He unfortunately was not able to truly benefit from the anti-fibrotic treatments that have helped so many and lost his battle in 2015. It also continues to astonish me that with all the medical advances we have made that BMI is still so widely used as the ONLY tool to discuss a person's health as it relates to weight. There are countless articles that debunk the BMI as something that actually measures health as it was never intended to do that when it was created in the 1800s by a statistician. It was never meant to be a tool to evaluate an individual's health, only a population's health. It does not take into consideration anything besides height and weight. And there are many people who are listed as "healthy" according to the BMI but are battling eating disorders. Conversely, there are many people that are "obese" and have no health problems at all. I have had obesity listed on my medical chart since I was about 10 years old but the only measurements of my health that I care about are the ones that are truly markers for chronic illness like for diabetes and/or heart issues. For you to be counseled consistently about losing weight when you are battling a disease that makes you short of breath and makes it difficult to exerise and being told that you just need more willpower is disgusting! Keep advocating for the PF community and sharing the difficult story of your experiences!
Ann Reynoso
Courtney, I am grateful that you have read my column. I thank you for your comments. it makes it easier knowing that others have or may be experiencing this issue. It no longer hurts my feelings that my weight is always a topic of discussion, it now frustrates me. When it comes to my illness, I just want to discuss treatments and options, not aesthetics.
I am sorry to hear about your stepfather. I am sure he would be happy knowing that you are continuing to be involved with the PF community. Thank you for sharing.