This is something I've heard time and time again throughout my life. I'm not at all sure how to react to this statement. I know for me, disclosing my illness to new people has always been something that has made me feel vulnerable. I sometimes found comfort in the fact that I could keep it my little secret. It's a very personal part of my life that I don't feel like many people in my world (before Facebook) could relate to. It's made me strong and resilient, but also makes me scared and angry. When I choose to tell someone about my disease one of a few things usually happens:
1) They back away slowly and pretend they didn't hear me. I guess it's a little too much information for these folks.
2) They start asking questions like crazy. I like this. In this instance I have a captive audience and they care. They really care.
3) They immediately tell me about so and so who they know who HAD cystic fibrosis. This group always has a story to share about someone who died of the disease. It's just like when your pregnant and everyone wants to tell you all of the gory details about what can go wrong.
4) Then there is the puppy dog eyes, cocked head to the side, I feel so sorry for you look. These are the people who knew someone who died of CF, but refrain from sharing the details. For the record, I never disclose in an effort to make someone feel sorry for me. I beg of you, PLEASE, don't feel sorry for me. That makes me feel awkward. I realize that I have a very blessed life.
5) Or I get the statement "...But you don't look sick". This very effectively shuts down the conversation and we move on to more pleasant topics. I am thrilled not to look sick. However, I know that most CFer's don't always look sick. If only you could see me from the inside out.
I know that this statement is made out of a lack of awareness, but it sometimes makes me feel like my entire experience has been devalidated (if that's even a word). Well, I guess your right then. I guess if I don't look sick, then I must not be sick after all. Forget the fact that I do Vest treatments a couple times a day, am on constant antibiotic treatments and take tons of pills a day.
Maybe it's the meaning of the term "sick". If sick means acutely ill, then no, I am not always sick. However, if "sick" means dealing with a chronic illness on a daily basis to stay alive, then yes, I am sick. I don't like to think of myself as disabled, when at the same time I think I've earned my disabled badge. We CFer's don't like to limit ourselves if our disease doesn't make us. We run marathons, sky dive, climb mountains, have families, work and lead lives filled with the same joys and pains as any healthy person. Yet, some awareness and understanding about the challenges we do face, even though we "don't look sick" is often in order.
Two of the most frustrating statements that are often made to CFer's from people who don't "get it" deal with disabled parking and the smokers cough. I have heard story after story of CFer's parking in handicapped parking spots and being cussed at or put in their place for not belonging there. Then there is the CF cough, which sounds an awful lot like a smokers cough. Nope, we didn't create this cough ourselves. I've heard of people judging our coughs and making rude comments such as "Have another one...". This being said to someone within one of the most anti-smoking communities you'll find. Next time, please hold your judgement!
So even though I live with an illness, that is still considered terminal in nature, I don't want to be considered disabled by the average person. I just want to be understood. I do, however, feel a special kinship with others with illnesses or disabilities. That is why I chose to work in oncology. I can relate.
Here are two blogs from two other special CFer's related to this same topic.
This first blog had me rolling on the floor laughing. Just picturing Josh in this situation makes me smile. Please read!!! Yeah, I got the CF too!
http://www.welcometojoshland.com/2009/02/at-almost-30-i-feel-like-i-have-been_18.html
This next blog was written by Lauren, a 19 year of Cyster, who is wise beyond her years! This is so beautifully put :-)
http://ihavecfsowhat.blogspot.com/2010/06/stand-up.html
5 comments:
I remember a post a year or two ago by Aspen when she said someone got upset with her for taking too long crossing the street. She didn't look sick, but sure wasn't able to amble across fast enough for their liking.
Awesome blog as usual Stacey.
I am often at a loss for words when people make comments about my cough. Of course later on I always think of the perfect come back :)
Earlier tonight I had a discussion with my mom about people who judge. Perhaps it's the CF and I know that my inside doesn't look nearly as healthy as the outside, but I try to never ever judge people. And I especially try to never say something to someone that might sound judgmental.
From now on I'm just going to reply that I have a genetic disease and hope that I have informed them of something they might not otherwise have known about, and that maybe in the future they won't judge.
I'm glad you and I have a place to talk about this stuff and share with others.
<3
I just LOVED this post. I have had all these experiences with people who don't get it. The horror stories are what i get the most of lately. I'm foing fundraising now, so everybody that finds out I'm the one with the CF wants to tell me a story. I don't get it! Whrn i worked in the public, as a beautician, I got all kinds of comments. It was one reason I quit.
I'm guna check out the other blogs. (I just love Laurens blog. She's alittle bit younger then me, & I feel i've went through all the same things and cant relate so much).
I do my best to amuse you , my dear friend. I swear, this stuff just happens to me. Just this past weekend a woman said to me (with the best of intentions): "It's amazing you are still alive!" I told her every second of my day I break my personal record for most respirations in my lifetime. :-) She didn't get it.
Thank you for thinking enough of my story to put it on your blog. You are pretty special too, ya know.:-)
Great post, Stacey! I think we have all heard similar things at some point, and it can be very frustrating.
Just this week I was approached by a stranger in a parking lot asking if I could spare a cigarette. When I told him,"No, sorry, but I don't even smoke" his face went beet-red and he quickly walked away. I don't know if it was a total coincidence, or if he just assumed since I SOUND like a smoker, I must be one. Ha ha!
I wrote a post on this topic a while back, if you're interested in reading it:
http://adamandjennylivingston.blogspot.com/2010/09/my-energy-account.html
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