CF Awareness Month Day 28 - What Not to Say

Since diving into the world of CF social media a few years ago, where I've been able to meet friends with CF and follow people's lives through blogs and vlogs, I've realized there are no hard and fast "What-not-to-say" rules that hold true for all of us.  Just because we all have CF doesn't negate the fact we're all still individuals with unique life experiences that shape the way we respond to people commenting on our disease and struggles.  Some things really REALLY bother some CF patients, while others really just don't care.  (Case in point:  I always pause and spend a good 15-20 seconds trying to figure out what I should call other people with CF in my blog, because some people get offended by the term "CFer", others by always being called a "CF patient", and still others detest the terms "cyster" and "fibro", etc.)

Also, I've found that, as time goes by and I experience more of life, some of the phrases that used to bother me no longer do, but a handful of new comments will really make me scowl.

I used to HATE when doctors or other people referred to going into the hospital and/or getting IVs as a "tune up," especially back before I was routinely in the hospital a couple times a year.  I found it offensive to talk about my body as if it were a car engine that just needed a little tweaking.  Nowadays, it's still not a term I myself use very often, but hearing someone else say it doesn't raise my hackles like it used to.

It also drives me CRAZY when random people comment on my cough in public and offer me cough drops, but I realize I can't really hold that against them.  I've written on this topic before.

Some people with CF hate it when people make comments on how much food they eat, or say something like "I wish I could eat like you do!"  However, this one honestly doesn't bother me.  This actually is one of the rare times I usually feel comfortable seizing an opportunity to educate someone on CF.  Maybe it's because I personally view this as the one perk that comes with having CF - I happen to really enjoy the fact that I can eat so much food and not be a gigantic size, so I don't mind laughing along with them.  But know that these kinds of comments can really offend some people with CF, especially if weight gain is an ongoing challenge.

Also, some people really hate it when they're sick and someone makes the comment "You're looking really good!" or "But you really look so healthy!"  I guess this bothers people because they actually feel like poop and want other people to realize they don't fell well.  Again, though, this is one that doesn't bother me personally.  In fact, I appreciate it when I get feedback that I don't look as awful as I feel, or that I still look "totally normal," because I know if I did look the way I feel, I would look really scary!!

I get tired of being asked "How are you feeling?" 57 times a day by people around me who know I've not been feeling well.  Once or twice is fine.  Beyond that it gets annoying.  I promise to tell you if I can feel any real change.

Also, I currently really dislike people saying things like "You're such an inspiration!" when I'm sick.  This makes me a little angry.  I don't want to be your inspiration just because I'm going through a difficult struggle with my health that I have absolutely zero control over.  I'm really just surviving it the best I can, just the same as you would.  I'm not doing anything inspirational other than suffering, and I would give almost anything to NOT be in this position right now.  If I'm going to inspire you, please let it be based on something I've worked for in life, something I've accomplished, or some positive impact on the world I was able to make.

That's all I can think of for now.  Really, my advice is just to get to know the person with CF as an individual, and you should be able to get a good idea of their sense of humor and what ticks them off and translate that into how you talk about their illness. :)