Ask the Advocates: Judging An Invisible Illness

During cystic fibrosis (CF) awareness month this May, we strived to elevate and shine a light on CF community experiences. There are many parts of living with CF that are not immediately noticeable to strangers, or those unfamiliar with CF. Many people assume if someone "looks fine" then they must also feel the way they look. But this is not always the case.

We asked our patient leaders: Has anyone ever judged you or not believed you for having an “invisible” illness? Their answers reflect how living with CF can often be invisible to others:

Response from Janeil

I think having to explain that you live with CF while simply trying to survive with CF on the inside is a common experience. I know I deal with that conundrum all the time. Especially because I look fairly healthy on the outside, have managed to have two children, and are generally upbeat personality people are really shocked when they realize I have CF and all I do to manage my health. They just can’t fathom a world where all those factors can be true. I have noticed a lot of the time, it’s medical professionals who may have learned about CF in school a long time ago but aren’t necessarily up to date on treatments and life expectancy that are the most shocked. They seem to be very doubtful I actually have CF. However, I try to educate them and take it as a compliment that I am living a fulfilling life with CF.

Response from Cheriz

I’m thankful I have not dealt with this very much (as I have looked very underweight & had a “CF Cough” for over 30 years of my life). But, I feel this is more likely to happen as more medication comes to market that helps us live a more “typical” day-to -day life. I didn’t struggle with this growing up, because I lived in a smaller community and I was open about my having CF (and my weight and CF were more noticeable). Now that I’m at my healthiest, thanks to Trikafta, many new people I meet have no idea I have CF, unless I tell them.Which is fine, It’s blessing to be so much healthier. But as CF grows in awareness, more people are understanding that each case is different and you can’t always tell that someone has it.

Response from Mikayla

Having an invisible illness has made it extremely difficult to where in some cases, I feel the need to persuade others into believing and/or taking the illness I have seriously. I have been told by many that I look healthy or look “normal”. They would be correct in that statement, it is normal, but it is my version of normal. Something I have come to learn is that my version of normal will not be understood by anyone, unless we could switch bodies. That was a saddening realization because for many years of my life, all I wished for was to be understood. Unfortunately, we live in a world where people DO judge a book by its cover. Some days I wished I had some sort of proof to show off to people to let them know what I’ve been through and that I have a chronic illness. Other days, I am thankful I can blend into a crowd. If anything, this has taught me to never judge based on appearances, I never know what’s going on inside someone's mind or body just at a glance, even if I’ve known them for years.

Response from Marieliz

Absolutely! I think when people think about disabilities, they expect some sort of outward “look”. Unless I use my walker that day or my oxygen then I am met with disapproving glances if I am in my disabled parking spot. No one knows the battle I am fighting everyday or inside and that’s always hard, but I try my best to move forward and not allow others to cast their judgements on me because in the end they don’t know what I go through, and we just live in a judgmental society.

Response from Ella

I haven’t been outright judged – but I can tell sometimes that people might be thinking I am faking it. I sometimes use my handicap placard to part in spots closer when I am out at the store and I often feel a sense of embarrassment that I might be judged for being an able-bodied person that is taking “advantage” of something intended for the disabled because no one can tell that I’m actually functioning with a quarter of lung capacity and I am breathing heavy from just a brief stroll into the store 100 feet away.

Response from Moriah

To my knowledge, I have never been doubted to have an illness. There have been times, though, that I refrain from doing certain things for fear of others judging me. One example is using motorized carts at the grocery store. There are days when I'm having an especially out-of-breath day, and the idea of walking around a store pushing a cart just sounds exhausting, but because I don't LOOK sick, I worry that others will think that I'm just being lazy.

Have you ever felt judged by others who are not aware you are living with CF? Share with us in the comments below!