Body-shaming Comments Can Hurt People With Chronic Illness

Healthy people can change their appearance, but those with PF often can't

Charlene Marshall avatar

by Charlene Marshall |

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Pulmonary fibrosis has stolen a lot from me over the years. Like most people, I’d never heard of this cruel and life-threatening disease before my diagnosis of idiopathic pulmonary fibrosis (IPF) in 2016. I also had no idea how many other body systems are affected by chronic hypoxia, when oxygen levels in the blood are lower than normal.

When I was short of breath and started seeing various doctors, including general practitioners, urgent care physicians, and asthma specialists, I naively thought a simple inhaler would fix my symptoms. During the frustrating 13 months of having dyspnea (labored breathing), fatigue, and a chronic cough, I truly believed I was dealing with a stubborn virus. When I received my diagnosis, I was again naive; I thought the disease’s effects would be localized in my lungs.

There is no cure for IPF, and the treatment options are inadequate as they don’t stop fibrosis progression in the lungs — they only slow it down. I use the word “inadequate” because drugs approved by the U.S. Food and Drug Administration for IPF patients can come with a wide array of side effects. After being on Ofev (nintedanib) and other medications to manage this disease for a number of years, I can assure you that all the effects of IPF aren’t localized to my lungs.

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My body and physical appearance has changed as a result of prolonged steroid use, combined with supplemental oxygen use and disease progression. Some days I struggle with those physical changes and dislike the thinness of my hair, the prednisone “moon face,” brittle nails, and skin rashes, to name a few symptoms. As a result, it bothers me when I hear others who don’t have pulmonary fibrosis body-shame themselves.

In my childhood and adolescent years, I never used to pay close attention to how our bodies changed. I figured things like acne, braces, and weight gain or loss were just part of growing up. What bothers me now, as an IPF patient, is that these things can all be fixed or improved for those who are healthy, but the issues I’m having with my body cannot be changed. Actually, let me correct that: Some of the physical changes I don’t like could be improved, but only if I stopped the medication needed to keep my disease stable. It isn’t much of a trade-off when you think about it.

I often hear people without a chronic disease body-shaming themselves, and it’s hurtful. I try not to let it irritate me, especially in the presence of those making the claims. But I know they aren’t intended to hurt me. Mentally, however, I think about how trivial these problems seem, and all I want to be able to do is breathe without supplemental oxygen and come off all the toxic medications used to manage IPF.

Following are some of the body-shaming comments I hear most often from healthy people, all of which can be harmful for those of us living with a chronic illness.

‘My teeth are crooked’

While I acknowledge this treatment isn’t cheap, advances in orthodontics can essentially customize your smile these days. In addition to being able to straighten them, there are ways to whiten teeth, remove excess teeth, or even get false teeth.

‘I wish my hair was …’

It’s true what they say for most women when it comes to our hair: We want the hair type we didn’t get. I often hear friends saying they want curly or straight hair, whichever is opposite of what they have.

But hairstylists are skilled in being able to give you the hair type you want. This is another thing on our bodies that can be changed if we have the means and are truly unhappy with what we’ve got.

‘I’m so fat’

This comment irritates me the most, especially since the prolonged use of steroids have made my face feel exceptionally chubby or puffy. While not always easy, personal trainers can help someone improve their nutrition or maximize their exercise abilities to achieve their fitness goals and desired body type. That’s not so easy if you have a chronic condition.

These are just some examples of body-shaming that can be changed with the right support and effort, but daily I hear many more. I understand these issues bother those who are criticizing themselves, but it’s harmful because the shame I have about my body now is directly connected to this disease or the medications used to manage it. I simply want to be able to breathe, and with IPF, I can only help that; I can’t fix it.


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.

Comments

Randall Thornton avatar

Randall Thornton

I know what you mean Charlene. The last sentence of "I only want to breath". Me too. As I have stated before, I was discovered with this disease in 2020. I have been on oxygen every since. Lately is has gotten worse. I was able to do just fine on 6-7 L on my home machine. On my Inogen I had it maxed out at 6 which I found is not really 6 but about 3 or 4. I had gone shopping at Walmart and started to get spots in front of my eyes. I figured it was the light bulbs since I'm light sensitive. Well, it got worse and by the time I got home, I couldn't see and my breath was so labored I thought that was the end. I checked my oxygen level and was at 66.which you know is way below the min. 88. The home oxygen machine was jumping all over the place. screaming and light flashing. Called Lincare and they brought out a new machine. Found out that I have to be on the cylinder anytime I go outside now and use the green tubing on the home machine because it is for hi output and I am on 8 now. Yes, I wish I could breath and be active like the old days.

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